tag:blogger.com,1999:blog-47789752075108477262024-02-02T15:56:20.880-07:00CCSVI {M}ammanannys{S}toryThis is my journey from the very first symptoms of Multiple Sclerosis; 17 years of progressive disability, through the search for a cure to the angioplasty procedure for Chronic Cerebro-Spinal Venous Insufficiency that pulled me out of a wheelchair and into a second chance for life.There is no cure...but we have for the first time a chance for an enhanced quality of life.Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.comBlogger104125tag:blogger.com,1999:blog-4778975207510847726.post-56222503127327934872013-07-18T15:14:00.000-06:002013-07-18T15:14:43.943-06:00Stay hydrated”..RIGHT, leave me alone!<b><b></b></b><div dir="ltr" style="text-align: left;" trbidi="on">
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Drink even if you think you aren't thirsty: if you feel thirsty, it means you are already dehydrated and your body is trying to let you know. Of course PwMS may not get that message from the body to the brain, so keep a water bottle or wine skin attached to you, your bike, car etc.
Go to any CCSVI website and the words”keep hydrated” or “drink plenty of water” will be on every page or close to it. I use to think I was a little OCD about hydration until I met Daryl. Seriously, even many of us who have had the procedure are tired of hearing about it. The truth is that it is not simply a good idea, or necessary: it is critical that we stay hydrated. I am one of the lucky ones who can tell quickly when I become dehydrated. Some people have not been as fortunate. Feeling thirsty is a sign that you are not keeping ahead of the need for drink.
Due to my own severe heat intolerance I also have hyperhidrosis (profuse sweating). If you are picturing a large person with a dirty tee shirt and huge armpit sweat marks…you have the wrong picture. As long as I keep my core temperature under the red zone, I look like any other old lady on the smallish size. It takes much planning and cooling equipment, as well as an up to the minute means of weather information. An individual can be severely dehydrated, particularly in the summer, and not be aware of it until it becomes a medical emergency.. It doesn't matter if you are in constant A/C or not. People can sweat as much or more during as they do in the summer. It is quite possible to lose even more fluid during the winter months under all the flannel and knickers. Dehydration can and will be a catalyst for restenosis.
Walking in public places, church, meetings etc. can be embarrassing if you let it. I don't. My health is more important to me than the “drinks are not allowed” signs in many businesses. Try to bring your sippy cup into the theater and see what happens. They all have “no dogs allowed” signs also. Well there are exceptions to every rule. The ADA allows access to service animals who are trained and certified to accompany disabled people in grocery stores, airplanes or any other building or facility open to the public.The law also makes allowance for the disabled to have “handicapped only” parking spaces. Of course enforcing the law in both the above situations has been a nightmare for many of us. I have lifetime handicap license plates and 2 placards for cars in which I am a passenger. My service animal has all of her papers and certification on a laminated card I take with me everywhere she goes. (BTW in the US you don’t have to show any paperwork to anyone but it saves a lot of confrontation opportunities from ruining your day.)
So what do we do if we have to use other medically necessary non-traditional aids? You have options. You can explain quietly that you aren’t trying to stiff the theater for the price of a Coke. That rarely works. You can carry a large purse but eventually you have to take the bottle out and actually use it. You can appeal to their compassionate side and explain your situation. That works at least 10% of the time. You could also have your doctor sign a “medical necessity” form. That option works for me. Should this all be necessary? In a word,hell no! (Ok two words) But we all know the crap we have to put up with when it comes to the rights of people who are handicapped, disabled or otherwise not the “average” citizen; whoever that may be, I haven’t met one yet. What we are talking about here is not setting up a wet bar in the county courthouse. We are talking about an unobtrusive innocent container of water.
I have written 7 or 8 blogs about how to beat the heat from absolutely free to $1000.00 & up. Since I have to wear a cooling vest, sometimes even in winter, I do what I must. If I needed a portable oxygen tank, I wouldn’t be as concerned about etiquette as I would be about passing out from low O2 stats.
Heat intolerance may lead to heat exhaustion under severe circumstances. If you experience signs of heat exhaustion or heat stroke, you may need to seek emergency medical treatment. These symptoms include:
• Confusion
• Loss of consciousness
• Vomiting
• Muscle cramps
• Body temperature of 104 F or higher
• Elevated heart rate
• Rapid breathing
Some doctors may tell you that is heat intolerance is merely an inconvenience. However MS induced heat intolerance can result in heat exhaustion and stroke just like anyone else out in the sun too long. We don’t have to be in a scorching desert; a warm room can do the trick. Heat stroke can be fatal.
If you have MS, heat intolerance can lead to problems with your vision. This can range from blurred vision to temporary loss of vision. An increase in body temperature amplifies the distortion of your body’s nerve signals in those with MS. This is referred to as Uhthoff’s phenomenon.
What to do?
Stay hydrated and keep cool.There are a myriad of different cooling methods.
PURCHASE
A cooling vest with a liquid Cooling System has been proven to be the most effective, affordable portable personal solution to heat stress. This is not a vest you soak in water which becomes slimy, can't be worn under other clothing and doesn't perform well in high humidity. This is not a vest with packets of frozen liquid that are bulky, heavy and quickly lose their effectiveness. This is a vest that is lightweight, breathable and uses NASA-developed technology to cool you with chilled water circulated through a network of microtubing. It costs a little more, but it works much better. Cost: approximately $500.00
This is the system I use:
http://www.mscooling.com/circulatory-cooling-vest
Others:
http://www.icevests.com.au/
http://www.veskimo.com/why-best-cooling-vest.php
An ice vest with packets of frozen gel is much cheaper and fine for most people. An extra set of gel packs is very convenient. You can have one in the freezer a while using the other.
http://www.mscooling.com/evaporativecooling
$35.00 & up
http://www.mscooling.com/coolingkits
Wrist wraps
Bandana cost: $10.00
Evaporative gardening hat: cost: $20.00
http://www.mscooling.com/athletes
FREE
Make your own cooling vest:
http://www.ehow.com/how_8751108_make-manual-cooling-vest.html
Cooling neck wrap
One yard of 36″ wide tan cotton muslin will make 9 neck coolers. “Magic Crystals” are the watering crystals you put in the soil of your potted plants. “Moisture Plus” and “Soil Moist” are two brand names. It is NOT vermiculite or perlite! These tiny beads absorb up to 100 times their weight in water, and swell with the water a then give it off slowly to the plants, or to a hot neck in our case. They can be found in the garden department of discount stores, or garden centers. One package will make MANY neck-coolers.
Cut the muslin into 4″ wide strips (by 36″ long). Fold lengthwise and sew across the short (selvage) end, and down the long side, using a fairly short stitch length. Leave the other end open. Turn the tube right-side out. A pencil makes this step fast and easy. Press flat.
To contain the crystals in the middle section of the neck cooler, sew a line across the tube about 10″ from the stitched end. Spoon just 1/4 teaspoon of crystals into the open end and make sure that they slide down to your sewn line. Sew another crosswise seam about 15″ from the first seam, to contain the crystals. Finally, just stitch the open end closed.
(NOTE: since crystals vary in size by manufacturer, make ONE neck cooler as a sample first, soak it for 10 to 12 minutes, to determine the correct amount of crystals to use. The fully expanded crystals should fill the tube, and not burst the seam! The tube must be able to BEND enough to be tied around the neck!)
One note of caution: You will be tempted to add more crystals, thinking that more is better. However, these crystals swell A LOT. (1/8 tsp swells to about 1/3 cup of gelatinous balls).
Soak the collars in water for 8-12 minutes until they swell and then tie them on, The crystals eventually wear out and will not absorb as much water. However, they should last a month or two.
To use your neck cooler, soak the middle of the cooler in water until the crystals in the middle bulge. The first soaking may take as long as ten minutes before the crystals absorb as much water as they are capable of. You can then tie the neck cooler around your neck. The crystals will slowly give up their absorbed water and the evaporation of the water should cool you for hours. The neck cooler can be re-soaked and used again and again. It should last about two months before the crystals lose their ability to absorb water.
Other Strategies:
Get a cheap spray bottle - fill it with water, adjust it to fine mist and spray it on your exposed skin for an instant chill-zing cooling effect.
Keep the back of your neck in shade (wear a cap backwards, or raise your collar) or put a wet handkerchief on the back of the neck. The sensor for our body temperature control system is in this area, and so with this method you can make the rest of your body think that you are "cool".
Place or tie an icepack behind your head.
Wet all your hair, or just all along the hairline in a pinch. The evaporation of the water will cool your head (though it may make your hair a bit frizzy if it's curly!).
Wear a bandana with water soaked in it and put it on your head. Or you can relive the 80'
Water misting fan. These portable devices are battery operated so you can take them with you wherever you go. As you mist and fan yourself, the water is evaporated on your skin, giving you an instant cooling sensation.
Soak a t-shirt in the sink, wring it out and put it on. Sit in a lawn chair (or other chair that lets air through to you) in front of a fan. Re-wet as it dries. Use lukewarm water for this so you don't "shock" your system with cold water.
Wear a short sleeved shirt and put water on the sleeves only. If there is a breeze or fan blowing on you, you can actually get cold! Use a squirt bottle, the sink or hose if outside to keep your sleeves wet. If you are outside and wearing long pants and you put water on your legs, the water will cool your legs. Long skirts are also good for this. Just sprinkle the hemline with water.
Run cold water over your wrists for 10 seconds on each hand. This will reduce your temperature for roughly an hour.
Soak your feet in a bucket of cold water. The body radiates heat from the hands, feet, face and ears, so cooling any of these will efficiently cool the body. Kids wading pools are great for adults feet too.
Fill your bathtub with cool water and get in. Once you are used to the temperature, let some water out and refill with cold water. Keep doing this until you are sufficiently cold. Your body will stay cool for a long time after you get out. For a fast cool-down, add ice!
Clothing:
Wear nothing. (or as we say at our house, “ run around nakie” .If you're in a situation where you can go without clothes, this can be the most comfortable and natural way to stay cool.
Wear next-to-nothing. Put on a swimsuit, or wear your underwear at home.
Wear summer clothing. Wear loosely-woven natural fabrics (cotton, silk, linen) rather than polyester, rayon, or other artificial fibers (with the possible exception of performance fabrics).
Wear light colors. Darker colors will absorb the sun's heat and stay warmer longer than light or white clothing, which reflects light and heat. Wear natural summer clothing.
Cover yourself up. Covering up may actually keep you cooler, especially if the heat is low in humidity. In the scorching temperatures of the Middle Eastern deserts, traditional cultures wear clothing covering from head to toe. By protecting your skin from the sun beating down, you'll also shade your skin. Be sure your clothing is made of natural fabrics and loose-fitting.
Lie on the floor. Warm air rises (since it's less dense than cooler air) so it's layered on top of the downward moving cooler air, which sinks lower. If you're in a house, for example, stay lower than the warm air. Make your way to the basement or lower level. It will be coolest near the floor on the ground level.
Snorkeling system. Take a glass and fill it almost to the brim with ice cubes. Hold it up to your mouth and blow gently into the cup. The ice causes the air you are blowing into the cup to cool down drastically, and since the air only has one way out of the cup (the hole which should now be aiming right at your face) the cold air is forced out over your skin.
To put the "snorkeling system" to more efficient use, point a fan into a square of four cups filled with ice water and ice cubes. The cooler air in the cups have no where to go but out. Each night, refreeze the cubes and open the windows instead.
Sit in the shade. Find a shaded area and set up a water misting system that connects to an ordinary garden hose that can be found at home improvement stores. Sit there and let the mist cool you off.
Avoid peak sunlight hours. Take a cue from people in extremely hot climates and avoid going out between 10 a.m. and 3p.m., when the sun's rays are hottest. You'll also avoid a sunburn this way.
Close your blinds. Shutting your blinds and curtains during the day will help block the sun's heat. As soon as the sun hits your building in the morning, close all windows and keep exterior doors and windows closed throughout the hottest part of the day. Do this until night falls and it's cool enough to open the windows for the night.
Open the windows at night. Open selective windows so that cooler night air is blowing in throughout the evening. Leaving all interior doors open (including closets and kitchen cabinets) helps, too. If you leave them closed, they store the daytime heat and your house won't cool off as much at night.
Cool down your house with fans. Position a ceiling fan, an upstairs window fan or an attic fan to draw off the heat collected in upper rooms and push the heat outdoors. Set up your portable fan so that the fan sucks up cooler air from the floor below, and blows hot air upwards towards the ceiling.
Make a DIY air conditioner. Put a metal bowl of salted ice in front of a fan, and adjust the fan so that the air is blowing over the ice. Or, use one or more 2 liter bottles and fill them mostly full of (water - 70%) & (rock salt - 10%) (air - 20% for expansion) (the salt brings the temp of the frozen water down to a lower ºF), freeze them, then place them in a large bowl (to catch dripping condensation). Position a fan to blow on them. As the salty ice in the bottles melts, the air cools around them. The fan will blow that air at you. The water & salt in the bottles can be refrozen every night and used again repeatedly.
Turn off all heat sources. Don't use the stove or oven to eat. Eat cold food, or use the microwave. Incandescent light bulbs also create heat - switch to compact fluorescents or LEDs. Turn off your lamps and your computer when you're not using them. You should also turn off your TV since it gives off a lot of heat, as well as some plug-in power adapters.
Avoid steam. During the day, don't take a hot shower, wash dishes and clothes or cook until after dark. Make sure your pot lids are tight-fitting. Make sure the door gasket seals on your oven, washer and dishwasher are in good shape and have no breaks or rips.
Adjust your pilot light. If you have a gas stove with pilot lights, make sure they are set correctly. If they are set too high, they will produce excess heat.
Put smooth white fabrics over anything in your house that's fuzzy. For example, you could cover corduroy pillows with white satin pillowcases for summer, put linen slipcovers over wool sofas, or just throw white sheets over furniture. Light-colored fabric will reflect heat instead of absorbing it, and the smooth texture will give you an impression of coolness.
Okay what else?
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Freeze a water bottle and keep it with you. Drink from it, or just put it on your skin.
In front of a fan (that is running) put a cup of ice. Stay in front of the fan and colder air will get to you.
Do not leave a fan on in an enclosed room when no one is present (unless it's an attic fan). A fan does not cool the air already in the room; in fact, it heats it. The fan's motor generates heat and even the circulating air creates a less significant amount of heat from friction. It just feels cooler when you are present because of natural moisture evaporation from the skin, which only cools your body if you are in the room. Save electricity and turn off all fans in enclosed rooms that are not occupied.
If your garage is under living areas of your home, leave your hot car outside to cool off before putting it in the garage.
If all else fails, go to the mall, library, church, movie theater or some other air-conditioned public building.
The early morning and evening are usually cooled down enough to enjoy your walk, run, hike, bike, gardening, or yard work.
During a heat wave, many towns and cities open up air-conditioned "cooling centers" in nearby schools and community centers, and will help you reach them. People with MS (or other medical conditions) can call their local government services for a list of cooling centers.
Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-67512891827466147962013-04-22T13:54:00.000-06:002013-04-22T13:54:02.841-06:00Dysautonomia and MS/CCSVI Part 1<div dir="ltr" style="text-align: left;" trbidi="on">
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<b><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFkdGTJdvcW9SW4oUxID5Hp91_PQaS7Y2sqPusquyvAHrdooDMXual2hinTxnS-1FTBmvriL4j3XFgp0BPF1RDA6-M3BIqw_DP8TpEmwhPmBsqn1qTO4X8-AL8OihTZgaCroUm8ZT3UNQR/s1600/logosmall.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFkdGTJdvcW9SW4oUxID5Hp91_PQaS7Y2sqPusquyvAHrdooDMXual2hinTxnS-1FTBmvriL4j3XFgp0BPF1RDA6-M3BIqw_DP8TpEmwhPmBsqn1qTO4X8-AL8OihTZgaCroUm8ZT3UNQR/s320/logosmall.jpg" /></a> and MS/CCSVI Part 1<b></b></b>
Dysautonomia is a medical term used for a group of complex conditions that are caused by a malfunction of the autonomic nervous system (ANS). The ANS regulates all of the unconscious functions of the body, including the cardiovascular system, gastrointestinal system, metabolic system, and endocrine system. A malfunction of the ANS can cause debilitating symptoms and may pose significant challenges for effective medical treatment. This means that the automatic things your body always does may not be happening so well.
Dysautonomia is a dysfunction of your autonomic nervous system. Obviously, the autonomic nervous system is very important to our bodies. The heart, stomach, intestines, blood pressure, body temperature regulation, endocrine system (glands), pupil dilation, and muscles (in the skin, around blood vessels, in the eye, stomach, and in the heart) are all controlled by the autonomic nervous system. A malfunction of this system impacts every organ of the body. Most of the time we are unaware of our autonomic nervous system working in its usual "involuntary" manner. It controls our systems automatically and we usually take it for granted. It works 24/ so we don’t have to rely on reminding our hearts to beat for instance.
Some patients develop symptoms after a viral illness, immunization, or trauma. Vaccines play a larger role in chronic illness than is generally known. Children may have symptoms after a growth spurt, common in early teens.
Dysautonomia conditions are widely unknown to society at large. As a result, most people do not realize the impact such conditions have on those afflicted and their families.
When we stand up - gravity pulls about 1/3 of our blood to the lower part of our body. Then our autonomic system responds and immediately tells our brain we are standing up and to do three things:
1. make the heart beat faster
2. increase the force of the heart's contractions and
3. tighten blood vessels in the lower part of the body to about three times it's previous tightness.
The effect forces blood from the lower half of our body into the upper half. Then, our blood pressure regulates properly and we are good to go.
In some people with dysautonomia the brain does not get these messages correctly and their blood stays in the lower part of their body and then their blood pressure drops and their heart rate increases.
Low blood pressure has nothing to do with our intelligence or how smart or clever we are. It can cause cognitive dysfunction such as short term memory loss .It affects their ability to think clearly and to concentrate. This impact on concentration is usually brief or transient.
Some people are overwhelmed by their symptoms and have to lay down all the time. The heart rate often shoots up as the body responds to a drop in blood pressure. This can be the cause for a lot of tiredness and fatigue and generally feeling washed out.
It is often difficult to see the symptoms of dysautonmia. A general physician sometimes misses the clues leading to a proper diagnosis. Cardiologists and cardiac electrophysiologists can efficiently diagnose and treat dysautonomia children. Sometimes neurologists get involved though personally I wish they didn’t. Research is being done at the Cleveland Clinic, Johns Hopkins, Mayo Clinic, Medical University of Ohio, National Institutes of Health, NY Medical College, Vanderbilt Medical Center and others. It is exciting and revolutionary, and there is tremendous hope on the horizon. Tragically, there are also extremely rare fatal forms of dysautonomia but this is not at all common in children.
The average person may have never heard of dysautonomia before, but progress is being made in this field of medicine every day and word is getting out. With time and awareness, more and more people will start to understand the various forms of dysautonomia and more and more people will know what it is. Thanks to medical science and compassionate physicians and researchers, there is tremendous hope.
For additional information on the history of dysautonomia:
http://heartdisease.about.com/cs/womensissues/a/dysautonomia.htm
Dysautonomia: A family of misunderstood disorders
Symptoms of dysautonomia may include:
• tachycardia (extremely fast heart rate)
• bradycardia (slow heart rate)
• palpitations
• chest pain
• dangerously low blood pressure
• wide swings/sudden drops in blood pressure
• orthostatic intolerance (the inability to remain upright)
• excessive fatigue
• exercise intolerance
• Dizziness
• Fainting
• near fainting
• gastrointestinal problems
• nausea
• insomnia
• shortness of breath
• anxiety
• tremors
• frequent urination
• convulsions
• cognitive impairment
• visual blurring or tunneling
• migraines
Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-25805112351555769212013-04-21T13:45:00.002-06:002013-04-21T13:45:29.213-06:00<div dir="ltr" style="text-align: left;" trbidi="on">
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4d3b733c85e3e1f16686e7574ea68155Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-3949744511602488062013-04-12T20:45:00.000-06:002013-04-12T20:45:00.539-06:00Steroids: a Band-aid Not a Cure<div dir="ltr" style="text-align: left;" trbidi="on">
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I am on another anti-steroid campaign. I’m not sure that I am capable of re-wording the information to make it more palatable, but I’ll give it a go. For over 30 years we've known that steroids can routinely cause over-activity of adrenal hormones, which produces Cushing's disease. They can also cause muscle wasting, hyperglycemia, water retention, bruising, insomnia, serious mood changes, menstrual problems, impotence, loss of libido, or even allergic shock and diabetes and its evil twin, reactive hypoglycemia. I know because I have both.
Like antibiotics, steroids are one of the most abused class of drugs in this country. Daily low doses of prednisone can double your risk of hip fractures and cataracts. I have had my share of fractures and recently learned I have cataracts. Steroid treatment is the cornerstone of managing diseases and conditions where inflammation is the prime issue. Intractable pain is good motivation for steroid therapy. Crohn's disease, rheumatoid arthritis and inflammatory bowel disorders respond well to steroids. They have a place in medicine, just not the prime spotlight.
Irreversible damage from steroid treatment is no longer the rarity it was when it was used in emergency situations 15 to 20 years ago. Some of the most dangerous among them include:
• liver damage, jaundice
• Fluid retention
• High blood pressure
• Increases in LDL (bad cholesterol)
• Decreases in HDL (good cholesterol)
• Renal failure,
• Severe acne
• Trembling
Men:
• Shrinking of the testicles
• Reduced sperm count
• Infertility
• Baldness
• Development of breasts
• Increased risk for prostate cancer
Women:
• Growth of facial hair
• Male-pattern baldness,
• Changes in or cessation of the menstrual cycle
• Deepened voice
Why do physicians make steroids a first line of attack? They give the appearance of the instant miracle cure the patient expects Too many doctors prescribe these drugs and cross their fingers that the patient feels better quickly and find a different practitioner before the next bout. They refuse to believe that steroids can cause the terrible damage that drug companies have long admitted to. Even they can’t give us a line of BS with a straight face when it comes to these drugs because the side effects easily lead straight back to them.
The fastest relief is what medicine in this country is all about. (After profits of course). The answer to what ails us is to suppress inflammation and the immune response, working against the body. If there is a fever lower it, if inflammation is present provide steroids to remove it. If it appears we may have a virus or a bacterial infection just quell it with antibiotics. This way of doing things can be effective in the short term, and important in life threatening situations, but potentially devastating in the long term especially when over-used. Many of our most debilitating diseases can be traced to some form of inflammation. Those of us with Multiple Sclerosis are learning this and hoping our doctors follow suit.
This type of medical care eventually weakens our immune system making it less effective while the disease burrows deeper into the body and must be dealt with in the future. Doctors seek immediate resolution of present symptoms merely to treat a chronic condition later on. Why do you think so many of us have chronic illnesses? The key is to NOT suppress symptoms unless it it becomes perfectly clear that it is absolutely necessary. Symptoms are a sign the immune system is working and doing its job. We cannot continually weaken he immune system hoping to kick start it further down the road without some unfortunate outcomes.
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSm_yJOLqRf5hOh8tqE9c-pq1anDdDgT5oS_k3PNBsXqhq2FdVF2-S-UMjxfFeFbczkovSUgF_kbOW_dVSj8Ku41V9qlMMkBd-sd-Q5o5NZJh1i8_kr60_dM4p0CqTjx_3qeVc0dICbvmb/s1600/567.jpg" imageanchor="1" ><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSm_yJOLqRf5hOh8tqE9c-pq1anDdDgT5oS_k3PNBsXqhq2FdVF2-S-UMjxfFeFbczkovSUgF_kbOW_dVSj8Ku41V9qlMMkBd-sd-Q5o5NZJh1i8_kr60_dM4p0CqTjx_3qeVc0dICbvmb/s320/567.jpg" /></a>Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-86380365599952060322013-04-01T13:48:00.000-06:002013-04-01T13:48:02.530-06:00Keeping an eye on Lyme and the CDC..<div dir="ltr" style="text-align: left;" trbidi="on">
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Keeping an eye on Lyme and the CDC..
by Linda Rousay (Notes) on Wednesday, March 20, 2013 at 1:39pm
With the current interest (and consequently little or NO interest from Healthcare providers, I thought we should explore Lyme related issues. The same tick that carries Lyme disease has another little nasty critter that can infect people with or instead of Lyme disease. Many people who are infected with Babesia microti feel fine and do not have any symptoms. Some people develop flu-like symptoms, such as fever, chills, sweats, headache, body aches, loss of appetite, nausea, or fatigue. Babesia parasites infect red blood cells so babesiosis can cause hemolytic anemia (from destruction of red blood cells).
Babesiosis can be a severe, life-threatening disease, particularly in people who:
do not have a spleen
have a weakened immune system for other reasons
have other serious health conditions (such as liver or kidney disease)
over 55 years old
BTW: The CDC (Center for Disease Control) in the US doesn’t want you to bother reporting or having your doctor report a diagnosis of Babesiosis.
Tickborne transmission of B. microti primarily occurs in the Northeast and upper Midwest, however it has been reported sporadically nationwide. Of course if we aren’t to report these occurrences than how accurate can the statistics be? There have also been isolated reports from western Europe though the governments don't seem overly concerned.
Anaplasmosis is another disease transmitted the same way, however the treatment for Lyme will effectively take care of this bad boy also. Human anaplasmosis (HA) wasn’t officially recognized until 1993. (Doesn’t that sound familiar?)
Fever (over 102°)
Severe headache
Muscle aches
Chills and shaking
Nausea
Vomiting
loss of appetite
weight loss
abdominal pain
cough
diarrhea
aching joints
change in mental status including short term memeory loss and instant recall.
Although people of any age can get human anaplasmosis, it tends to be most severe in the aging or immune-compromised. Severe complications can include respiratory failure, renal failure and secondary infections.
The number of anaplasmosis cases has been increasing since the first cases of HA were reported in Minnesota in the mid-1990s.1,500 cases of HA were reported in 2011 in the state of Minnesota alone, which is remarkable given that reports are not encouraged, remember?
In 1999 the CDC offered this in answer to the question, “If I get Lyme disease will I always have Lyme disease?” ‘NO; patients treated with antibiotics in the early stages of the infection usually recover rapidly and completely. Most patients who are treated in later stages of the disease also respond well to antibiotics, although some may have suffered long-term damage to the nervous system or joints. Approximately 10-20% of patients experience fatigue, muscle aches, sleep disturbance, or difficulty thinking even after completing a recommended course of antibiotic treatment. These symptoms cannot be cured by longer courses of antibiotics, but they generally improve on their own, over time.’
In 2012 the same question was answered with this; “Updated statistics and better reporting by physicians will require an amendment of the CDC’s findings from 1999.”
IS THAT EVEN AN ANSWER, OR AM I REACHING HERE?Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0Caldwell, ID, USA43.662938399999987 -116.6873595999999843.479076899999988 -117.01008309999997 43.846799899999986 -116.36463609999998tag:blogger.com,1999:blog-4778975207510847726.post-29949734845006767402013-03-13T22:28:00.001-06:002013-03-13T22:28:56.710-06:00Clinical drug trials: real or fabricated?We are led to believe that Clinical trials, particularly drug trials are designed to facilitate symptom relief for a myriad of diseases and conditions. Doctors base their treatment, in part by the information garnered by these well planned and executed trials. Unfortunately the unvarnished truth is that results are manipulated even fabricated in order to facilitate profit sharing for drug companies and health care providers in too many instances.
Multiple Sclerosis is only the tip of the iceberg as we are learning with great speed via the technology which brings the world into our homes and offices where we can peruse it at our leisure. The family doctor is a distant memory as is the trust we placed in them.
The practice of medicine has become as politically charged as any other industry. The CDC (Center of disease Control) recently revealed that prescription drugs are now killing far more people than illegal drugs. Most major causes of preventable deaths are declining, yet those from prescription drug use are increasing. In 2009 for the first time ever in the US, more people were killed by drugs than motor vehicle accidents. Overdosing on prescription pain and anxiety medications has grown to epidemic proportions.
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Drug fatalities more than doubled among teens and young adults between 2000 and 2008, and more than tripled among people aged 50 to 69. The most commonly abused prescription drugs, Oxycontin, Xanax, Vicodin, and Soma now cause more deaths than heroin and cocaine combined.
Many medication studies published in leading journals have been found to be sponsored by drug manufacturers and include deceptive statistical reporting and wording. The flu vaccine is a perfect example of medical manipulation, with research concluding the effectiveness of the shots to be as low as one percent.
A recently released government audit shows nearly one in seven elderly nursing home residents are given antipsychotics ; nearly all of them dementia patients for whom the drugs can be lethal.
With the advent of easy internet access, the responsibility for our own health care becomes clear. We are the only ones we can trust to monitor the medical professionals we once deemed omnipotent.
http://dl.dropbox.com/u/66292082/Drugs%20Exploitation%20in%20Multiple%20Sclerosis%2C%20Open%20Letter%20to%20MS%20Society.pdf
http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.naturalnews.com%2F039416_medical_research_scientific_fraud_false_data.html&h=0AQEhAXgp
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Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com2tag:blogger.com,1999:blog-4778975207510847726.post-83007250917245279922013-03-09T21:25:00.000-07:002013-03-09T21:25:07.218-07:00Stress: Good or Bad?<div dir="ltr" style="text-align: left;" trbidi="on">
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https://www.facebook.com/notes/linda-rousay/stress-is-it-good-or-bad-for-us/10151491892329598
Stress in small amounts is necessary in order to live a productive and healthy lifestyle.
First and foremost, stress is positive in that it can be a great motivating force at times and this is partly probably why we developed stress in the first place. Stress improves some aspects of our intelligence. Stress is actually a cognitive enhancer which can boost several aspects of our mental prowess and so help us in professional and academic capacities. Hormones are released into an individuals system as a response to a stressful event. These hormones increase the heart rate and heightens the alertness and focus level of the individual. This response is known as “fight or flight “ which we are born with. Stress appears each time something changes, when we have to adapt to a new situation. If we manage to react in a positive way, we can use this energy. Stress then becomes a chance, an opportunity for growth. A negative reaction, however, turns this energy against us and can become fatal.
Stress helps our brain to focus. It can help you to narrow your attention and to focus on the task in hand. Stress helps to increase memory and recall .This results from higher levels of cortisone. When levels of cortisone are too high it causes damage to the hippocampus.
Stress causes the release of adrenaline which in turn raises the metabolism and heart rate. This can then result in increased reactions and reflexes, while also acting as a painkiller giving us a higher endurance level. Adrenaline can also help to fight tiredness and fatigue. ‘Good' stress should be acute and not something that exists over a prolonged period. This is because an increased heart rate and lack of tiredness or pain might increase your endurance over short amounts of time, but over a long period of time the stress to the body can be too great and damage your immune system and cause heart problems.
However in the right circumstances, stress can be perceived as the 'spice of life' and can be what creates challenge, suspense and excitement. For instance some of the most important and happiest moments of your life were probably also very stressful – your first day at work, your marriage, the birth of a child, traveling, holidays special achievements. These are highly stressful because they represent exciting positive life changes. A complete lack of stress in your life might suggest that you haven't had any such major changes in your life and that might suggest likewise that you are not challenged in your life and not moving forward.
Stress becomes negative when the body stays uptight and alert, ready to take action as required. Too much stress leaves a body exhausted, anxious, frustrated or angry and leads to depression. Excessive stress is overwhelming we become unable to cope with the smallest task or event. Stress and excitement upset breathing and muscle tone. To know how to breathe properly is as such of vital importance.
Chronic and ongoing stress which is not counterbalanced with periods of release can lead to emotional problems, manifesting itself into physical illnesses. However, insufficient stress can act as a depressant and leaves many people feeling bored, dejected and unable to seek goals.
The first step toward handling positive stress is to acknowledge that it exists and to seek ways to correspond an equal amount of time relaxing and regenerating. Handling stress, whether positive or negative, is important for long term health. For a good and happy life, stimulation is necessary. Too much stimulation is also harmful. We need to learn to understand the difference.Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-53999187474146896922012-09-26T14:45:00.000-06:002012-09-26T14:45:14.829-06:00Always have a cold? Chronic Respiratory infections<div dir="ltr" style="text-align: left;" trbidi="on">
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Causes or triggers chronic respiratory infections can be divided into allergic and non-allergic etiologies. Aeroallergens can include seasonal pollen, mold spores, dust mites, animal allergens, and food (especially in children).
Non-allergic causal factors can include smoke, odors, cold air and weather, chemicals, medications (eg, aspirin and other non-steroidal anti-inflammatory drugs [NSAIDs)], beta-blockers), exercise, hormonal changes (eg, pregnancy, menstrual cycle), and bisulfite food additives.
Genetic differences may alter susceptibility to respiratory medications Significant genetic variation exists between and within racial and ethnic groups, but the issue is confounded by important coexisting economic, cultural, and environmental differences, including geography (place of birth).
Breathing difficulties can seriously handicap our ability to function and enjoy life. Air is our most vital source of energy and vitality. When we suffer from, bronchitis, allergies, frequent colds or simply insufficient oxygen intake, we are prone to a lack of energy, vitality and /or mental clarity.
Every cell within our body depends on an abundant supply of oxygen for proper metabolism and vitality.
Some Causes of Breathing Problems
1. Hereditary weakness may make our lungs or other organs of respiratory apparatus weak points in our system. Thus when tired, overworked, anxious or stressed, these parts of the body will start to malfunction. This does not mean, however, that we must suffer. It is in our hands to live in a certain way so as nurture and protect our bodies and minds. Among such weaknesses we should include the inability of the immune system to effectively protect the body from microbes and viruses. In some cases the immune system may work overtime trying to protect the body from "imagined" dangers. Allergies and asthma are often the result of such over-reactions from the immune system.
2. Environmental factors may also aggravate the condition. Cold and humid weather tend to accentuate breathing problems. Pollen and other particles in the air may cause allergic reactions. Occupational conditions such as working in a dusty area or in a smoke filled room may also aggravate the problem. Pollution irritates our nasal passage and lungs. Smoking cigarettes obviously damages our lungs, cutting off our supply of oxygen.
3. An over production of mucus clogs up the breathing passages, obstructing breathing. Foods, which tend to cause excess mucus, are all dairy products, white flour, white rice and sweets.
4. A lack of sufficient liquid intake causes the mucus to thicken and cling to the lungs and other breathing passages. This creates a favorable environment for microbes to reproduce.
5. Blockages in the spinal vertebrae or tension in the muscles of the upper back may also obstruct the flow of nerve impulses and bioenergy to the lungs. This may inhibit the proper functioning of the lungs.
6. Emotional blockages are directly connected with our breathing. People, who experience anxiety, depression, fear, nervous tension or a poor self-image, tend to subconsciously hold their breath. Thus their breathing is tense, shallow, and sometimes spasmodic.
Long-term emotional blockages may also affect the adrenal glands and thus hormonal disorders may also play their part in the problem. Negative emotions also depress or disturb the functioning of the immune system.
1. Environmental & Habitual Factors
a. Surround yourself with large green leafed plants, which produce oxygen and absorb pollution.
b. Get out of the city frequently. Go the sea or mountains and breathe fresh clean air.
c. Use regular deep breathing to clean out and rejuvenate your lungs.
d. Deep breathing while walking can clean out a considerable amount of pollution from the lungs.
e. If you smoke, then - love yourself - and stop.
2. Dietary Guidelines
a. Avoid all diary products, white sugar, sweets, white flour and white rice. When the problem has subsided, then we can start taking small quantities of dairy products while watching the body's reaction.
b. Eat plenty of fruits and vegetables.
c. Drink plenty (6 or 8 cups per day) of warm liquid daily. This may be water, herb teas, or water with lemon. Do not drink refrigerated or iced drinks.
d. When one has a cold, an onion and garlic soup spiced with pepper, cinnamon ginger and cloves, opens up the nasal passages and allows the congestion to flow out.
e. In some cases the use of natural vitamin C tablets can be helpful.
3. Facing emotional factors is essential for healing the cause of the breathing problems.
Indoor air pollution can be much worse than air pollution outdoors. In Europe, most children spend 90% of their time indoors.
More..
Indoor air quality may be affected by outdoor pollution, but also by indoor pollutants such as those produced by smoking and indoor heating and cooking and those released from building materials and cleaning products. It may be worsened by insufficient air exchange with the outside.
More..
Poor indoor air quality can cause or contribute to the development of chronic respiratory diseases such as asthma. The most important source of indoor pollutants is environmental tobacco smoke. Other factors which can contribute to indoor pollution are damp housing, the presence of pets, the use of fuels for cooking and heating, and chemicals released from building materials.
There is clear evidence that air pollution is associated with troublesome respiratory symptoms in children, but it is less clear whether specific pollutants are directly responsible.
Key air pollutants that can affect health are particulate matter, ozone, nitrogen dioxide, and sulphur dioxide. This pollution is mainly linked to road traffic or industrial processes. More..
Air pollution, worsens respiratory symptoms .Exposure to molds can cause human disease through several well-defined mechanisms. In addition, many new mold-related illnesses have been hypothesized in recent years that remain largely or completely unproven. Concern about mold exposure and its effects are so common that all health care providers are frequently faced with issues regarding these real and asserted mold-related illnesses.
Dust mite debris is the major source of allergens in house dust. These microscopic arthropods primarily feed on human skin scales. Mites typically infest objects that contain fabrics; for example, higher concentrations of mites are found in mattresses, pillows, bedding, carpets, throw rugs, stuffed animals, and upholstered furniture. Higher concentrations are usually found in older homes, in regions of high humidity, and in homes with heating units other than forced air. Cold, dry air at high altitudes is not conducive to dust mite growth. Both the mite bodies and fecal pellets are major sources of mite allergens, which become airborne when disturbed.
Major Allergen Avoidance Strategies
Impermeable (woven) covers (pillows, mattresses)
Elimination of dust reservoir (carpets, upholstered furniture)
Weekly vacuuming
Weekly washing of bedding in hot water
Reducing indoor humidity
Cat, dog
Pet removal
Pet washing
Impermeable covers
High-efficiency particulate air (HEPA) filters
An association between cockroach sensitization and more frequent episodes of asthma in patients in the emergency department has been described. Cockroach exposure in persons with asthma who reside in inner-city areas could account for the disproportionately high morbidity in this population, and the association of low socioeconomic status and cockroach allergy appears to be independent of age, sex, and race. Several studies have demonstrated that cockroach allergy is found not only in the inner city but also in any substandard housing conditions or where apartments are infested with cockroaches.
Cockroach:
Pesticides
Thorough cleaning
Elimination of food and water supply
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Fungi
Closing windows and doors
Repairing all leaks
Using air conditioning
Heating all rooms in the winter
Removal of contaminated source
Cleaning contaminated area with bleach solution
Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-63912028788584645182012-09-01T18:55:00.000-06:002012-09-01T18:55:08.364-06:00Emotional Lability in People with Multiple Sclerosis Scores Another Windfall for Big Pharma<div dir="ltr" style="text-align: left;" trbidi="on">
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MS is a nasty disease. There are over 50 symptoms associated with the MonSter. An often hidden little secret is the profound emotional toll that often accompanies the diagnosis. Most people newly diagnosed know very little about the disease. The past three years has yielded ample evidence that even the MS “experts” have been on the wrong track for decades. Fear of the unknown and the relapsing remitting nature of symptoms add significantly to emotional issues. Some emotional problems noted in people with MS are:
• Major depressive episodes as well as less severe depressive symptoms
• Grieving for losses related to the disease
• Stress and reactions to stressful situations
• Generalized distress and anxiety
• Emotional lability or mood swings
• Pseudobulbar Affect - uncontrollable laughing and/or crying
• Inappropriate behavior such as sexual aggressiveness
• Depression
Approximately 10 percent of people with MS experience uncontrollable episodes of laughing and/or crying that are unpredictable and seem to have little or no relationship to actual events or the person's emotions. A person may sob uncontrollably without feeling sad, or laugh inappropriately in a situation that isn't funny. Damaged nerve endings in the emotional pathways of the brain are thought to be responsible. It is important for family members and caregivers to know this, and realize that people with MS may not always be able to control their emotions.
Emotional lability causes rapid and unpredictable changes in emotions. Loved ones and friends report that the person is often irritable or angry. The stress of the disease often accompanied by some level of disability and changes in the brain itself makes emotional turmoil difficult for both the person with MS and their caregivers. All members of the family are likely to be affected by these mood swings. People with MS never know when and if another exacerbation will occur or how severely they may be affected in the future. They do not even know how they will feel in the afternoon or one day to the next. The loss of function and altered life circumstances cause distress and anxiety. Neurologists have a plethora of drugs to treat this condition. ”The treatment of these problems is complex. The person with MS may require some form of psychiatric medication, perhaps along with psychotherapy. Family members will probably need supportive counseling since these behaviors are often shocking and disruptive. In some cases, the affected individual may require supervision to prevent the manifestation of the behaviors in question.” (Our best buddies at the NMSS)
Cognitive dysfunction caused by MS may result in poor judgment and even sexual disinhibition. The behavior is not deliberate or under the person’s control. It is not a sign of lack of control or poor moral character.
Pseudobulbar Affect (PBA) –( uncontrollable laughing and/or crying). If you have a lesion between your cortex and brainstem then the emotional expression can be entirely separated from the conscious awareness of it. Is commonly treated with amitriptyline, levodopa, desipramine, fluoxetine, and fluvoxamine. Nuedexta was approved 2 years ago to treat PBA. It is a combination of 20 mg dextromethorphan and 10 mg quinidine, two existing, generic—or cheap—drugs, and costs from $3000-$5000 per year. The mark up is to cover the costs of clinical testing, marketing, and shareholder profits. A paper in the Annals of Neurology from 2007 shows that a number of medications, including SSRIs like citalopram, and tricyclic antidepressants (TCAs), are effective in managing the symptoms of PBA, so why the need for a new drug?
Avanir manufactures this drug. It was approved for a neurological syndrome whose major manifestation is “affective instability”. The proper diagnosis of PBA requires far more than that, yet doctors are trying to prescribe it off-label for the affective lability seen in many other conditions (bipolar disorder, schizophrenia, autism, dementia, childhood irritability, blah, blah, blah. ..) Expect Avanir to try to get Nuedexta approved for all of these conditions.
The trials which led to Nuedexta’s approval showed only slight improvement vs. placebo in patients with PBA due to multiple sclerosis and ALS. It was not compared to SSRIs or TCAs.
Avanir’s investor materials already state that the company will seek approval for multiple sclerosis-related pain, and for behavioral symptoms in dementia.
http://stevebmd.files.wordpress.com/2011/04/nuedexta-april2011.pdf
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Once again the drug companies want to take advantage of our ignorance to make a few billion dollars for Phat Pharma.
Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-13036507851444867392012-08-25T22:41:00.002-06:002012-08-25T22:41:52.438-06:00<div dir="ltr" style="text-align: left;" trbidi="on">
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It is said that the brain cannot grow new cells and repair itself. This is only partially true. Those of us who have neuro-damaged areas in our brains from lesion activity and hypoxia worry that even if progression is halted, what is lost is gone forever. I decline to buy that line of reasoning anymore than I buy into the autoimmune theory of Multiple Sclerosis/CCSVI. The human body is a self-repairing mechanism, and conventional medicine has for a long time grossly underestimated the ability of the brain to repair itself.
When cells in the brain are damaged and die, perhaps from a stroke or in our case, hypoxia and lesion damage brain tissue will undergo necrosis, and a rim of gliosis will form around the damaged area.
Gliosis and loss of neurons occur in neurodegenerative disorders such as Alzheimer's disease and multiple sclerosis. Interestingly to us, it is also found in vasculitis, Parkinson's disease, ALS and Huntington's disease.
The blood brain barrier (BBB) prevents certain materials in the blood from entering the brain. If there is any damage done to these protective cells, severe brain damage will result. Those who have been on therapy with disease modifying drugs for long periods of time are likely to have breeched the BBB.
The greatest factor in functional recovery after brain injury comes from the brain's ability to learn, called Neuroplasticity is the brain’s ability to learn, or adapt to compensate for the areas of damage. Axons and the peripheral nervous system cannot regenerate in the adult brain. Rehabilitation usually requires professional therapy. The brain can often reorganize itself so that when one part fails, another can often substitute. Under the proper circumstances a person can heal, even from autism, strokes, learning disorders, hypoxia lesion damage and traumas.
The most common cognitive effects of brain damage from lesion activity and hypoxia:
1. Problems with paying attention or focusing
2. Memory issues
3. Challenges with planning
4. Organization
5. Decision-making
6. Problem solving
7. Persistent low grade headache
8. Lightheadedness
9. Poor attention and concentration
10. Excessiveness or easy fatigue
11. Intolerance of bright light or difficulty focusing vision
12. Intolerance of loud noises
13. Ringing in the ears
14. Anxiety and depressed mood
15. Irritability and low frustration tolerance
16. Sleeping pattern issues
17. Confusion
18. Slower thinking
Brain function is plastic, or reparable, when a sense like touch has been profoundly diminished. Plasticity is an important indicator that the brain is reorganizing to compensate for an injury or deficit. For a decade, neuroscientists have known that the brain can increase its plasticity, or adapt, in response to injury that limits bodily motion. Vision loss, hearing, taste, smell or touch are common side effects of traumatic brain injury hypoxia and stroke. The key word for PWMS/CCSVI is HYPOXIA. Diminished blood flow and reflux cause a significant loss of oxygen to the organ that needs it most.
Forced use therapy is already applied in the clinic for patients with motor deficits. For example, a patient who suffers a brain injury is made to use a poorly performing arm with the expectation that the brain may be plastic enough to assist that arm in recovering motion.
Plasticity is an important indicator that the brain is reorganizing to compensate for an injury or deficit.
The portion of our brain that processes sensory information appear to be very adaptable.
Fatty acid phosphatidylserine (PS) is essential for effective neurotransmission. PS deficiency is linked to mental impairment, including Alzheimer's and non-Alzheimer's dementia, depression and Multiple Sclerosis. PS supplements help to replace brain cell membranes, boosting nerve chemical activity such as dopamine and serotonin, stimulating nerve cell growth, generating new connections between cells, lowering levels of the stress hormone and stirring activity in all brain centers, especially higher brain centers such as the cortex, hypothalamus and pituitary gland.
Antioxidants, Vitamins A,E,B's will also help with brain clean and recovery.
The brain needs the time during the night to process memories and experiences from the previous day. The brain may also be repairing another type of damage that occurs during the day, a more physical type of damage. A new study in mice has linked a lack of sleep with Alzheimer's disease. A protein called beta amyloid has been found to be present in plaques found in the brains of persons with Alzheimer's disease. Researchers discovered that in mice bred to develop Alzheimer's disease, that beta amyloid accumulates during the day and decrease during sleep at night. Sleep deprivation in these mice lead to an acceleration in the formation of beta amyloid plaques in their brain.
While halting the progression of MS is a prime goal, gaining back what we though was lost is at least to some degree, quite possible.
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9BxfckylnPVq24AdKxFEaO9TpxQvGd0vXfgfru9GaGvVeP5k80vsHh5H8zlhh1nzL4cHF2JrM2L_LqVtnGf3ef_QfZESPcI-QvOj6IJtGecLa_L7rEN4zVf0GJGH5EDvxPYOmYT7bh7nT/s1600/iStock_000005809739XSmall.jpg" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="346" width="347" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9BxfckylnPVq24AdKxFEaO9TpxQvGd0vXfgfru9GaGvVeP5k80vsHh5H8zlhh1nzL4cHF2JrM2L_LqVtnGf3ef_QfZESPcI-QvOj6IJtGecLa_L7rEN4zVf0GJGH5EDvxPYOmYT7bh7nT/s400/iStock_000005809739XSmall.jpg" /></a></div>Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-27209776381897560032012-07-23T13:03:00.002-06:002012-07-23T13:03:19.868-06:00<div dir="ltr" style="text-align: left;" trbidi="on">
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Thanks to Shirley for reminding me about the Gilenya- PML connection. PML is an often fatal brain disease caused by Tysabri: a disease modifying drug to treat Multiple Sclerosis. Biogen's brain child was bad enough, then the Swiss company, Novartis felt the need to join the fiasco with a pill that will do the same thing.
http://www.foxnews.com/health/2012/04/13/patient-on-novartis-multiple-sclerosis-drug-gets-rare-brain-disease/#ixzz1rxU1dZo7Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-13146358964423818902012-07-19T18:33:00.000-06:002012-07-19T18:33:35.298-06:00WHAT'S IN A BRAIN?<div dir="ltr" style="text-align: left;" trbidi="on">
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We know what happens when lesions develop in the brain. Chronic hypoxia as in CCSVI causes damage also. If you know where you have lesions, you might want to know what those areas control.
1. Frontal lobe: is where we do our heavy thinking, and planning our actions. It is responsible for functions such as reasoning, problem solving, judgment and impulse control. It also manages our higher emotions such as empathy
2. Temporal cortex: where we process sounds and form memories
3. Occipital cortex: where we process all the things that we see
4. Parietal cortex: is where we integrate or makes sense of all of the different bits of information that are bombarding our brains. is involved in processing pain and touch sensation . It's also associated with cognition (including calculating location and speed of objects), movement, orientation, recognition and speech.
5. The Temporal Lobe : involved in auditory (sound) sensation, language recognition, emotion, memory and speech.
6. Medulla Oblongata: helps control the body's autonomic functions (things we don't need to think about to perform) like respiration, digestion and heart rate
7. Pons: manages our level of arousal or consciousness and sleep, relays sensory information to/from the brain, also involved in controlling autonomic body functions.
8. Cerebellum: regulates and coordinates movement, posture and balance. It also is involved in how we learn movement.
9. Amygdala: produces our emotions, especially fear. It triggers responses to strong emotion such as sweaty palms, freezing, increased heart-beat/respiration and stress hormone release.
10. Hippocampus: forms our memories, classifies information and long-term memory. It processes and stores new and temporary memory for long term storage. It's also involved in interpreting incoming nerve signals and spatial relationships.
11. Hypothalamus: linked closely with the pituitary gland to control many of the body's functions. It monitors and controls our circadian rhythms (daily sleep/wake cycle), homeostasis (making sure our body is running smoothly), appetite, thirst, other bodily urges and also plays a role in emotions, autonomic functions and motor functions.
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12. Thalamus: relays sensory signals, auditory (sound), Visual, Somatosensory (from your skin and internal organs), all go through the Thalamus organ on their way to other parts of the brain for processing. It also plays a function in motor control.Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-89474101936152338972012-07-05T13:48:00.000-06:002012-07-05T13:48:16.856-06:00Hughes Syndrome diagnosed by a simple blood test remains dangerously under-diagnosed<div dir="ltr" style="text-align: left;" trbidi="on">
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Antiphospholipid syndrome is an autoimmune condition (APS or APLS ) or Hughes syndrome, also known as “Sticky blood” is commonly misdiagnosed as MS. The person's immune system produces antibodies which attack proteins and fats in the blood. Some people with Hughes develop a syndrome which is very similar to multiple sclerosis where they have numbness or pins and needles, double vision or loss of part of the field of vision, and have difficulty walking. One of the main alternative diagnoses in patients with Hughes syndrome is multiple sclerosis.
People with it have an increased tendency to form clots in blood vessels; any blood vessel can be affected including the veins and the arteries. Deep Vein Thrombosis like “economy class syndrome” is obvious. It is common in people who sit for long periods of time in one position .Sitting in front of the computer or taking long flights are two good examples. Clots which occur in internal organs, the condition is more difficult to diagnose. It is possible to have the antibody (the sticky blood ‘tendency’) without any noticeable symptoms.
Headaches or migraines sometimes start in teenagers .The headaches may disappear in the 20’s and return and start again 10 or 20 years later. This is a most important feature of Hughes Syndrome, and a symptom which sometimes improves dramatically when treatment is started. Flashing lights is common in these headaches.
The brain is sensitive to "sticky blood" which can affect oxygen supply which causes balnce problems. Many patients feel giddy or slightly drunk.
Memory loss or cog fog occurs with hypoxia (oxygen deprivation). It can feel like Alzheimer’s disease. The person may forget the names of family members, friends, appointments, etc. Speech can sound slurred. Blood thinning can dramatically resolve the cognitive problems of Hughes syndrome.
In addition to the flashing lights and zigzag patterns which can accompany headaches and migraines, the person with Hughes Syndrome can experience double vision or sudden visual loss. This can be caused by the brain reacting to disturbances in its supply of blood or by the veins and arteries in the eye being affected. Poor circulation can make the skin cold to the touch and cause ulcers and “corned beef” looking discoloration.DVT’s can occur anywhere in the body at any time. Birth control pills can exacerbate the problem.
Hughes Syndrome can lead to heart attacks and heart valve problems that can mimic bacterial endocarditis, and can create clots in the upper chambers of the heart. Up to 20% of young people (under 45) who have a heart attack have antiphospholipid antibodies.
1 in 5 “young” strokes under the age of 45 are associated with Hughes Syndrome. These are preventable with a simple blood test to confirm Hughes Syndrome.
Hughes Syndrome can affect the blood supply to the intestines, causing abdominal pain, fever and blood in the stool. Antiphospholipid antibodies can also cause Budd-Chiari syndrome, in which a blood clot prevents blood from flowing out of the liver and the person may then experience nausea, vomiting, jaundice dark urine and the swelling of the abdomen.
1 in 5 miscarriages are caused by Hughes Syndrome. Late pregnancy loss is very strongly associated with Hughes Syndrome as is pre-eclampsia, placental abruption and intra-uterine growth restriction. The sad part is that it is preventable with low dose aspirin or heparin.
The main symptoms of Hughes Syndrome can include any of the following:
Multiple Sclerosis-like symptoms
Headache or migraine
Giddiness
Memory loss
Visual disturbance
Skin disorders
Thrombosis – DVTs
Heart attack
Stroke
Pulmonary embolism
Gastrointestinal disorders
Pregnancy problems
Fatigue
Aches and pains
low platelets counts
raised blood pressure
Dry eyes (Sjogrens’s Syndrome)
shortness of breath
pulmonary hypertension
terrible cramps of the stomach that develop about an hour after eating
Sticky Blood
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5UCUYTbPGp8k6IqZhN3ernX13pzn3y-lxh4Lx3SsIHm2Jxbf8PH3Xxzjgb7nPUfNABWzbkdfVrJbT5GVQjedPRM7RuRw2V5FoEDbhd8a2YaKrynq6WxNl2FeNwjLgpPTccpP94qEW_ys0/s1600/blood.jpg" imageanchor="1" style="margin-left:1em; margin-right:1em"><img border="0" height="188" width="250" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5UCUYTbPGp8k6IqZhN3ernX13pzn3y-lxh4Lx3SsIHm2Jxbf8PH3Xxzjgb7nPUfNABWzbkdfVrJbT5GVQjedPRM7RuRw2V5FoEDbhd8a2YaKrynq6WxNl2FeNwjLgpPTccpP94qEW_ys0/s400/blood.jpg" /></a></div>Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-33281920804878090802012-06-30T02:30:00.002-06:002012-06-30T02:30:47.302-06:00Take care of Your Liver + A Neat Little App<div dir="ltr" style="text-align: left;" trbidi="on">
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With all of the research we do online we need to know which medications and supplements will actually be helpful to us in our own situation. What works well for your Facebook friend may be harmful to you. More is not better. Since PwMS/CCSVI usually take medications as a normal part of treatment and supplement deficiencies, it’s a good idea to be sure your liver is functioning normally. You might want to discuss this with your PCP.
The hepatic function panel, also known as liver function tests, is a group of seven tests used to evaluate the liver for injury, infection, or inflammation. This test measures the blood levels of total protein, albumin, bilirubin, and liver enzymes. High or low levels may mean that liver damage or disease is present. The liver processes all the medications we take. Many of them for MS can cause liver damage as well as unrestrained supplements. I know that many of us have to experiment with the supplements that will work for us, but too much can be toxic. Some of the ones people throw out on the web are dangerous. What works great for one can cause liver failure in another. That’s why we DO need a doctor and pharmacist we can trust.
These meds and supplements can cause liver failure if not monitored. This is by no means a complete list:
Iron
acetaminophen
antibiotics
non-steroidal anti-inflammatory drugs
anticonvulsants
herbal drugs and supplements:
Kava
ephedra
skullcap
pennyroyal
Chaparral - Used as a natural antioxidant
Bitter Orange - Used for weight loss
Comfrey - Used to treat wounds and reduce inflammation in sprains and broken bones
Germander - Used for weight loss
Niacin - Used to lower cholesterol
Black Cohosh - Used for muscle pain and menopausal symptoms
Vitamin A is also known to cause severe liver damage when the dosage is too high or when taken at high dosages for an extended period of time. In fact, Metabolife had to recall its diet and energy bars in 2001 because they contained Vitamin A at a level much higher than was labeled.
Before my procedure, cognitive issues made multi-tasking impossible. It can be a hard task to keep track of all the meds and supplements we take, with or without cog fog. I found this recently and am trying it out. The Office of Dietary Supplements (ODS) has developed a free mobile app for consumers called My Dietary Supplements (MyDS). In addition you can use it on your PC. This is a simple way to keep track of the vitamins, minerals, herbs, and other products you take.
*Create personal product profiles for yourself and others.
*Record the name and amount of each product you take.
*Add additional information about each product in the Notes field.
*Email your product profile to yourself or your health care providers.
*Access reliable information about dietary supplements from the NIH Office of Dietary Supplements
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IMO there are not any privacy issues here
This is a free app, although it is not available in the app store. Though I personally don’t have great faith in the FDA, this app can help you keep track of your medications, supplements, etc. I have an iPad and an iPod and it works very well on those.
Go to this link: https://myds.nih.gov/
Use the touch screen to add the app to your home screen. You don't have to have an Apple product, it will work with any mobile device.
At this point in time CCSVI is a condition that forces us to take control of our own healthcare. I am all for little things that can help us do it.Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-68193602359334896102012-06-19T17:03:00.000-06:002012-11-15T01:36:26.524-07:00How It Feels to Be an MS Drop Out<div dir="ltr" style="text-align: left;" trbidi="on"><br />
</div>When MS began to drastically affect my life, I was a wife, mother and career professional with many varied interests. I was active in my church, community and home schooled my children. The first thing to go was my career. Instead of getting paid, I did volunteer work in the same field. People are more forgiving of your physical problems and cog fog if they aren't paying you. Eventually my youngest daughter decided to finish her last two years of high school in the public school system. Actually I think I was more involved with her education than I was before as I volunteered for everything at school also.By the time my EDSS reached 8.0 there was little of the old ‘me’ left. I went from caregiver to needing daily care myself. I hated the power chair, scooter, transfer table, disabled license plates for the handicap equipped van, support bars, in-home health care and me. I didn't adapt to my situation as well as some of my "MS buddies"; likely because I'm stubborn, opinionated and was accustomed to giving not taking. Though they tried to adapt also, my family seemed to be falling apart before my eyes.Somewhere along the line I stopped feeling sorry for myself and saved as many *spoons as I could to find ways to feel better physically hoping that emotional strength would follow. Posting online took so much time that I was numb with fatigue. My online friends (some have actually remained friends) pulled me through it all. I searched the web to find adaptive aids to help me keyboard, communicate and make things look bigger so my failing eyes could see them. The lifestyle diet and drug changes I made would have been difficult for anyone. In my hazy cognitively impaired stupor, it was a gargantuan obstacle. Again my husband, children and MS friends came to the rescue. By the time I heard about CCSVI nothing short of a miracle was going to slow my downward spiral. The rest is Youtube and Facebook history. There is still a question mark that obscures my sight from the future but I no longer fear the unknown because I’ve mastered it before; always with “a little help from my friends. I get by with a little help from my friends.” (John Lennon and Paul McCartney)The transition back to normalcy has been bittersweet. I still have to pinch myself when I wake up in the morning and there is no support bar above my head. The van was sold well over a year ago and every adaptive and assistive device but my power chair gathering dust in the garage has been given away or donated. Much of it I had to fight for from either my insurance company or a charitable organization. . Some people have said I was crazy to get rid of all of those things that took me so long to accumulate because my recovery from MS symptoms could be taken away anytime. Perhaps they are right yet I can’t live in limbo either.I would like to say that the journey home has been bright and beautiful, and for the most part it has been very positive. As my cognitive functions improved I learned that about 15 years of my MS journey has been time compressed. Though I remember the events of the past decade and a half, there are holes in the tapestry of time that are as hazy as they were the first time around. After the news of Dr. Zamboni’s work exploded in cyber space chaos ensued. The trust I once readily gave my doctors is gone forever. I have formed new medical alliances, but the days of trust and reliance will never again be realized. New friendships have been forged yet cannot replace the ones lost by anger and mistrust. New beginnings are always difficult, sometimes painful. Though I am in communication with others who have had similar experiences, we have all chosen different ways to deal with recovery. The excitement and gratitude for a second chance has been tempered somewhat by the more negative events of the past two years. The diagnosis of MS places a person in a strange club of sorts. There is only one requirement to join this group, but the price is so high that nobody wants to belong. Some who have only residual effects of the condition no longer feel “at home” anymore. Others would like to pretend that they were never even there. One woman I know was once extremely overweight. She could tell self-effacing jokes that made all of her more portly friends tear up in laughter. When she lost enough weight to look “normal” she began to realize that these friends didn’t laugh anymore when she told her jokes. Laughter was replaced with embarrassment, anger and maybe a touch of envy. In any case, she was no longer welcome in that “club” because she did not meet the one requirement: obesity. It can be that way for PwMS/CCSVI also. The only regret I feel comes from the inequity among us. Gender, age, location, education, money, influence, achievements or any other disparity that may exist for us should have no effect on our opportunity to be treated. Though I may not be personally responsible for the egregious treatment of PwMS/CCSVI in regard to the access to the proper medical care, guilt does ebb and flow unbidden.It is past time for reparation and equal access. To continue to allow the suffering, indignity and declining quality of life for thousands of people with a debilitating chronic disease solely to appease those with a personal agenda is an inhumane, heinous act of cowardice.*Anyone who has not been introduced to the “Spoon Story” by Christine Miserandino , you can find it here: http://multiplesclerosis-relief.com/2011/05/02/ms-center-and-the-spoon-theory/Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-85974464937404637302012-06-14T09:36:00.004-06:002012-06-14T09:36:55.125-06:00Caffeine and Fatigue<div dir="ltr" style="text-align: left;" trbidi="on">
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Caffeine blocks a chemical called adenosine from telling the brain when it's time to relax. The addiction to this feeling is exacerbated when you understand that your body will require more and more caffeinated liquid to receive the same energized level. It does not provide energy, it causes chemical stimulation.
Caffeine in the body interferes with healthy digestion and bowel movements. It dehydrates the body, depriving it of needed water to process food. It also obstructs the absorption of the very important chemical magnesium, which is necessary to maintain healthy bowel movements. It depletes the body of B vitamins, already a common problem for PwMS/CCSVI.
Coffee sets your body up for a rollercoaster day of highs and lows, only to bottom out at the point of exhaustion. Just a few hours after consumption, when the artificial high dies down, many people may reach for more coffee or something sugary to get another lift, leading to daily fluctuations in energy and alertness, and possibly to eventual chronic adrenal exhaustion.
Caffeine increases the stimulating neuro-hormone, noradrenaline, and reduces the calming neurotransmitter, serotonin. It doesn't add energy to your system, it just burns up your reserves at a faster pace. You get a short-term boost at the expense of long-term jitters. Caffeine intake usually combines physical addiction with a wide range of debilitating effects, most notably anxiety, irritability, mood swings, sleep disturbance, depression, and fatigue.
When you consume caffeine, the drug begins its effects by initiating uncontrolled neuron firing in your brain, according to Stephen Cherniske in his book, Caffeine Blues. This excess neuron activity triggers your pituitary gland to secrete a hormone that tells your adrenal glands to produce adrenalin.
Adrenalin is the source of our "fight-or-flight" response. By stimulating your adrenal glands to produce adrenalin, caffeine puts your body in this "fight-or-flight" state, which is useless while you're just sitting at your desk. When this adrenal high wears off later, you feel the drop in terms of fatigue, irritability, headache or confusion.
After prolonged exposure to caffeine your body enters a state of adrenal exhaustion. "Caffeine forces your glands to secrete when they don't have much left to give, and they have to keep digging deeper and deeper, making you more and more tired over time. And over the years, it takes more and more coffee to get the same result. Some people reach the point of drinking half a dozen or more cups of coffee to get the same result and it's barely keeping them awake. That's severe adrenal depletion."
http://www.naturalnews.com/012352.html#ixzz1xmS7jpyJAnonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-8571812758403963912012-06-02T14:28:00.002-06:002012-06-02T14:28:40.086-06:00<div dir="ltr" style="text-align: left;" trbidi="on">
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I wrote this is answer to a question in one of the groups I belong to on Facebook. I thought it was worth repeating:
Yesterday I wrote something about fear, probably in this group. I think all of you have touched on valid points about our dilemma. There is fear of the unknown, worry over whether or not you will be one who realizes symptom improvements, the cost, a competent provider, the list is long. What I have observed over the past couple of years is a natural ebb and flow in interest levels. We don't know enough about the details of our condition, neither do the doctors.
We are portrayed for the most part as chronically ill desperate people with questionable mental faculties. We will grasp at any straw to prevent further disease progression and loss of quality in our lives. Some of blame is squarely on our shoulders as we grope around in the dark looking for answers. The media and the rest of the dirty dozen have done an effective job of cementing that illusion in the minds of the general public.
Many of us have stepped up to the plate and have accomplished what I consider to be a miraculous service that benefits us all. I applaud the ones who are willing to talk about their results good and bad. It is or should be easier for people who have had better than average results to make a video or blog about their experiences and answer questions for those struggling to digest all of the information they are bombarded with daily. It takes determination and courage to open one’s self to scrutiny from people on both sides of the issue.
There is a skewed perception overall about the effectiveness of the angioplasty procedure. Some of the confusion is due to lack of disclosure from many who have had better than average results. I have spoken about this with many people online and in live meetings. Some doctors put their names and clinics out for all to see, it was generally accepted that all of the doctors, clinics and studies were a matter of public record. This is a misconception. Several doctors have told me that if they were involved with treating CCSVI, they would not want to open themselves to scrutiny from their peers as well as the MS Societies, government agencies and sensationalists. Time has validated their concerns. There was a time I didn’t agree with them. That ship has sailed.
My biggest concern has been comprehensive care. I have pushed this issue for over two years. The response has been all over the charts, from no interest to open hostility. I always liken it to cancer treatment centers. They treat all aspects of their patients’ illness including nutrition, the latest scientific breakthroughs and alternative medicine to emotional and quality of life issues. Specialties are a needed reality. The price we pay is a single focus on a multifaceted disease. A GP is necessary to monitor what everyone else is doing. Most of us don’t have that when we step outside the medical community’s tiny little box or envelope of comfort. CCSVI falls into that category. I have listed many times the doctors and other professionals I feel are needed in order for us to receive optimal care.
The last focus is the procedure itself. There are doctors who openly share their expertise and experiences and there are others who are ambivalent to openly hostile to peer review. This is not unusual. All pediatricians are not universally talented or provide superb care. The same is true of any medical specialty. They each have their own gifts and talents. I am very relieved to see the end of the “shop a doc” mentality. Even equipment use varies greatly; stents, balloons, pressure, procedure approach, etc. One size does not fit all. Never was anything more true than in the case of PwMS/CCSVI.
Lastly there is always the issue of personalities. There are narcissistic self-promoting individuals, (medical professionals and lay persons), teachable inquiring people and everything in between. Most of us lie somewhere in the middle. There would be a definitive change in perception of MS & CCSVI if the ones with all the power, money and personal agenda were not so vehemently against us.Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-4840281770767917032012-05-28T19:55:00.000-06:002012-05-28T19:55:36.288-06:00More on Heat Intolerance...<div dir="ltr" style="text-align: left;" trbidi="on">
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More on Heat Intolerance…
The transmission by nerve fibers of electrical impulses is heat-sensitive. It is even more so if nerve fibers' myelin insulation is lost.
Dehydration can be life threatening, especially for those over 40 or under 2 years old.
One way you can track when your body needs water is to observe the color of your urine. A light yellow color is the standard. Any color darker or deeper than this means the body is really out of water and you don't even know it. However this is not an accurate gauge for sudden hot weather scenarios. It just tracks whether you generally drink enough water.
Another way to measure dehydration is the frequency of urination. Keep track of how often you urinate during moderate temperature. If you normally urinate 4 times a day, the frequency should remain the same in hot temperatures. Frequency of urination should remain constant. If not, you are not drinking enough water. Divide your 24 hour day by 4 and you know that you should go approximately every three hours + or minus an hour. If you don't urinate within this range, drink water. This can save your life especially if you are not thirsty and unaware that you are dehydrated or thirsty
Because I am also a diabetic, heat exhaustion can be more serious. Most diabetics will normally drink twice as much water than other people at moderate temperature, so that the blood glucose level does not become toxic.
Apple cider vinegar can substantially help with heat intolerance. Just one tablespoon of apple cider vinegar in a glass of water at meals can help with heat intolerance. Apple cider vinegar contains acedic acid which stimulates the production of stomach acid. The more stomach acid the better as it breaks down your food into smaller molecules. The smaller the molecules the more efficiently your intestines and liver can absorb the nutrients it needs. When the body is stressed the stomach stops producing acid so at meal time there's not enough acid to digest the food. This creates all kinds of problems; indigestion, gastric reflux, IBS, bad breath, diverticulus, fatty liver, lactose intolerance, allergies, fatique, and heat intolerance. Some people like me become very ill when over-heated. Nausea is common, so you may have to force yourself to drink it. A palatable drink is a mixture of 1 quart apple juice, 1 pint purple grape juice 1/4 to 1/3 cup apple cider vinegar.
A 2005 study at Arizona State University revealed that apple cider vinegar slowed the increase of blood sugar when consumed before high-carbohydrate meals, important in preventing type 2 diabetes. According to a 2007 study at Malmo University Hospital in Sweden, eight of 10 type 1 diabetics with clinically diagnosed diabetic gastroparesis (vomiting and abdominal distension), experienced significantly reduced gastric or stomach emptying rates of a rice pudding meal taken with apple cider vinegar.
Vitamin C, magnesium D-3 and iodine deficiency also contribute to heat intolerance. 20% of all iodine in the human body is stored in the skin, specifically in the sweat glands. Lack of iodine in the sweat glands manifests as dry skin with a decreased ability to sweat. Iodine can also be concentrated in the stomach tissue, and the lack of iodine in the stomach manifests as achlorhydria (lack of digestive acid production). Iodine is used by the stomach cells, also known as parietal cells, to concentrate chloride which is necessary to produce hydrochloric acid (digestive acid). With the prolonged presence of achlorhydria, there is a much higher incidence of stomach cancer. Iodine is concentrated in the lacrymal glands of the eye, and a lack of iodine can cause dry eyes. Iodine can also be concentrated in the parotid and submandibular glands of the mouth, and iodine deficiency here can result in dry mouth. Iodine can be concentrated in the ovaries. Studies have shown there is a relationship between iodine deficiency and ovarian cysts. The greater the iodine deficiency, the more ovarian cysts a woman produces. In its extreme form, this condition is known as polycystic ovarian disease. Soda pop is the worst thing to drink when the body really needs water. The reason is clear: Soda pop is loaded with bromides. Bromides push iodine out of the system. Bromide builds up in the Central Nervous System (CNS). It is used as an emulsifier in citrus flavored soft drinks. The bromide functions as a CNS depressant and triggers a number of symptoms like paranoia. Bromide is also found in flour and bread.
Adrenal fatigue is associated with heat intolerance. It raises blood glucose levels and lowers blood pressure, although lab results may appear normal.
People with chronic heat intolerance tend to have a lower than normal temperature most of the time. Low body temperature over an extended period of time can eventually lead to following health complications:
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Fatigue
Headaches, migraines
PMS, irregular periods
Easy weight gain
Depression
Increased irritability
Edema (fluid retention)
Anxiety and panic attacks
Hair loss
Poor memory, poor concentration
Low sex drive
Unhealthy nails
Dull, dry skin and hair
Increased cold intolerance, heat intolerance
Significantly low motivation, low ambition
Difficulty sleeping (insomnia)
Allergies
Development of acne
Carpal tunnel syndrome
Asthma
Difficulty swallowing
Indigestion, constipation
Irritable bowel syndrome
Muscle and joint pain
Slow healing of wounds
Sweating abnormalities, itchiness
Easy bruising
Ringing of the ears (tinnitus)
Flushing
Bad breath
Dry eyes
Vision problems like blurred vision
Chronic low body temperature indicates poor health. Restorative medical techniques help improve the temperature level. Untreated low body temperature can prove to be life-threatening.
Heat intolerance causes a person to experience many of their MS symptoms. It is not the same as an exacerbation and will not cause a relapse.
We already know how many of our issues with MS are related to our digestive system. Heat intolerance may well be another low stomach acid symptom as well as a neurological issue.Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-90327778397971887722012-05-27T12:52:00.000-06:002012-05-27T12:52:57.201-06:00Lyme Disease & Multiple Sclerosis<div dir="ltr" style="text-align: left;" trbidi="on">
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<i><i>This is a long read about Lyme disease, but one you don’t want to miss if you have MS/CCSVI.
So you found out you that you have Chronic Cerebro-Spinal Venous Insufficiency . You are fortunate enough to have angioplasty to treat the condition and have gained some symptom relief. Since the diagnosis of Multiple Sclerosis has become blurred with other conditions you might decide to be tested for other diseases just to be sure. After 12 years of progressive MS you find out that you have Lyme disease. How did that happen? You never saw a tick, or bulls eye rash which are two of the main tell tale signs of the disease. Don’t feel bad a high percentage of people with Lyme are certain they never have been bitten by a tick. In retrospect, some remember the black dot on their head and thought it was a piece of bark, or a freckle that they accidently scraped off their ankle.
Though I have written many times about Lyme disease, more people with an MS diagnosis are being tested and found positive for Lyme disease. This is a result of thinking for ourselves and taking charge of our own healthcare. Kudos to us. If you are unsure of the testing process please refer to my link: https://www.facebook.com/notes/linda-rousay/got-lyme-are-you-sure/10150244085504598
https://www.facebook.com/notes/linda-rousay/more-slime-on-lyme-disease/10150216961964598
How and where to be tested: http://www.lymeinfo.net/support.html
https://www.facebook.com/notes/linda-rousay/keep-an-eye-on-lyme/10150214276149598
Lyme disease can be easy to treat in some while in others, it can feel like a never-ending battle. Chronic Lyme disease, is a systemic, debilitating condition which persists despite antibiotic therapy. The seriousness of this condition and its resistance to treatment requires an individualized treatment plan. It is widely misunderstood and surrounded by controversy, which causes problems with physicians, friends and family, insurance companies, disability coverage, etc. Lyme can be overwhelming and is often misdiagnosed as MS, fibromyalgia, chronic fatigue syndrome or some other neurological disorder,
There is no established cure for chronic Lyme disease. The response to treatment varies greatly from patient to patient. Many patients find they need to stay on antibiotics long-term for many years. Patients may also need combinations of antibiotics, co-infection treatments, medications for symptoms, and natural therapies. With these treatments some patients experience full recovery. Those who don't are left to continue the search for treatment options.
There are support groups online and in the community can be very helpful. These groups enable patients to learn about new treatment options and to connect with others facing the same uncertainties.
I have to insert a caution here as I always do for people with MS/CCSVI: The use of steroids to treat pain causes widespread concern among patients and physicians alike that steroids can be very harmful to patients with Lyme disease. Steroids suppress the immune system, which can be dangerous with an infectious disease.
More and more people with chronic Lyme disease have other tick-borne illnesses as well. These other illnesses contribute to the difficulty with treatment.
Late stage Lyme Disease (LD) is more severe than early stage, and it's also potentially debilitating. Symptoms of late stage LD can crop up weeks, months or, in some cases, years after a tick bite. Some of the symptoms of late stage LD include fatigue, headaches, sleep disorders, chronic arthritis, joint inflammation in the knees and other joints and memory loss. More severe symptoms include:
• Decreased consciousness
• Confusion
• Numbness and tingling
• Abnormal sensitivity to light
According to the Centers for Disease Control and Prevention (CDC), after several months, approximately 60 percent of people who don't get treatment for the infection will begin to have sporadic bouts of arthritis, with severe joint pain and swelling. The large joints are the ones that are most often affected, particularly the knees.
There are three oral antibiotics that are recommended to treat virtually all the symptoms of LD, including late stage---doxycycline, amoxicillin and ceftin. For joint pain and arthritis from late stage LD, doctors usually prescribe medicine that reduces swelling and pain. If needed, excess fluid can be drained from the affected joints.
What Are the Treatments for Late Stage Lyme Disease Joint Pain? http://www.ehow.com/way_5544059_treatments-lyme-disease-joint-pain.html#ixzz1w5yf9wcK
What Are the Treatments for Late Stage Lyme Disease Joint Pain? | http://www.ehow.com/way_5544059_treatments-lyme-disease-joint-pain.html#ixzz1w5yNrJuF
Lyme is a real disease: http://www.hindawi.com/journals/ipid/2010/876450/
Lyme can be a major pain in the butt when it comes to the medical profession: http://archive.fwweekly.com/content.asp?article=7478
Lyme And Panic Disease: http://www.thehumansideoflyme.net/viewarticle.php?aid=37
Late and Chronic Lyme Disease: Symptom Overlap with Chronic Fatigue Syndrome & Fibromyalgia
http://www.prohealth.com/library/showarticle.cfm?libid=8441
Lyme and the “axis of evil”: http://www.medscape.com/viewarticle/586226
Clinical trials validate the severity of persistent Lyme disease symptoms.
http://www.ncbi.nlm.nih.gov/pubmed/19013025?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DiscoveryPanel.Pubmed_Discovery_RA&linkpos=4&log$=relatedreviews&logdbfrom=pubmed
Insufficient evidence to deny antibiotic treatment to chronic Lyme disease patients: http://www.ncbi.nlm.nih.gov/pubmed/19268485?ordinalpos=3&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
Headaches and chronic Lyme pain: http://www.lymeinfo.net/pain.html
Read one woman’s story of her journey through Lyme disease. http://www.angelfire.com/tx3/RoseWriter/
Inexpensive Drug Appears To Relieve Chronic Pain in Fibromyalgia, MS, Lyme Disease, etc.: http://www.sciencedaily.com/releases/2009/04/090417084002.htm</i>
<i></i></i>Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-81619955465325600732012-05-09T17:30:00.000-06:002012-05-09T17:30:28.792-06:00Cognitive problems and treatments for People with MS/CCSVILet me give this another go:
Of the 50 various MS symptoms I had, cognition, cog fog, MS brain farts, "old timer's" disease or what ever else you want to call it was by far the most crippling and self-esteem destroying hell I have ever lived through. I have made a few observations:
Cognitive impairment occurs when problems with thought processes occur. It can include loss of higher reasoning, forgetfulness, learning disabilities, concentration difficulties, decreased intelligence, and other reductions in mental functions.
If either memory, or thinking were somehow disrupted, then our ability to process information would be impaired.
Some treatments that have proven to be effective in some people
ACETYL-L-CARNITINE: 1500-4000 mg daily (caution: do not take with blood thinners like Warferin)It also improves blood flow which makes sense for PwMS/CCSVI
• CITICOLINE: Age-related memory problems. Citicoline seems to help memory loss in people aged 50 to 85 years.
• Stroke recovery. Stroke patients who take citicoline by mouth within 24 hours of having the kind of stroke that is caused by a clot (ischemic stroke) are more likely than other ischemic stroke patients to have a complete recovery within 3 months.
• Long-term blood circulation problems in the brain (cerebrovascular diseases). There is some evidence that citicoline taken by mouth or given by IV or as a shot might improve memory and behavior in patients with long-term cerebro-vascular diseases, such as stroke.
• PHOSPHATIDYLSERINE: 100 mg of phosphatidylserine three times daily.
Description of the how we use our cognitive skills:
• focus, maintain and divide attention (concentration)
• learn and remember new things
• think, reason and solve problems
• plan, carry out and monitor our own activities
• understand and use language
• recognize objects and assemble things together
• judge distances (spatial skills)
Language processing, concentration and memory problems are the most common symptoms of cognitive dysfunction.
'Word Fishing” is a common complaint relating to language use, where the person knows what they would like to say but is unable to 'find the words'.
Concentration may result in a person beginning a task, becoming distracted by another but beginning the new task before finishing the first, and so it goes on and on, until there are numerous unfinished chores or tasks.
Memory problems too, present a challenge for people with multiple sclerosis, particularly short term memory. This tends to show itself as a failure to remember basic things such as the name of a familiar item or animal, for example.
The range of cognitive dysfunctions which can be associated with multiple sclerosis:
Verbal fluency and language skills can be impaired
Intellectual reasoning can be impaired
Inability to learn quickly
Poor problem solving abilities
Information processing can be slowed
Poor concentration
Poor judgment
1. The majority of people with MS/CCSVI are/were multi-taskers. Someone who can dovetail their projects and complete them is usually is an “A” personality. 10% of people with multiple sclerosis, the impairment to their cognitive functioning will eventually become severe enough to significantly interfere with daily living.
2. The ones who multitask are the most likely to suffer from cognitive problems. (This is not written in stone, however)
3. When a brain cell dies, it does not regenerate, it is gone. The brain being the marvelous work and wonder that it is can compensate for a considerable amount of cell death. Even with no formal retraining the brain will often pass the cerebral baton to another part of the brain and learn to compensate for tissue degradation elsewhere.
4. It is wise to prepare the brain to “cross train “ before the time it becomes a necessity.
5. A person with MS can develop this symptom at anytime. You may go for ten years with little or no cognitive issues and then find yourself wondering what year it is.
6. Cognitive problems usually occur over time. Since the person developing the problem may only have a vague feeling that something is wrong, it is often a friend or c0-worker who mentions your changed sense of awareness.
7. Cognitive impairment may accompany symptoms related to infection including:
• Fever
• Headache
• Malaise or lethargy
• Muscle twitching, spasms or seizures
• Nausea with or without vomiting
• Rash
• Stiff or rigid neck
BTW: other causes of cognitive problems are:
• chromosome abnormalities and genetic syndromes,
• malnutrition
• prenatal drug exposure
• poisoning due to lead or other heavy metals
• hypoglycemia (low blood sugar hypothyroidism (underactive thyroid), complications of prematurity, trauma or child abuse such as shaken baby syndrome, or oxygen deprivation in the womb or during or after birth
Cognitive impairment that develops in childhood or adolescence can result from many conditions.
• Examples include side effects of cancer therapy,
• malnutrition
• heavy metal poisoning,
• autism (abnormal development of communication and social skills), metabolic conditions
• systemic lupus erythematosus (disorder in which the body attacks its own healthy cells and tissues)
With age, other conditions such as stroke, dementia, delirium, brain tumors, chronic alcohol use or abuse, substance abuse, some vitamin deficiencies, and some chronic diseases may cause cognitive impairment. Head injury and infection of the brain or of the covering of the brain and spinal cord (meninges) can cause cognitive impairment at any age.
Cognitive impairment may accompany other symptoms related to metabolic disorders including:
• Abdominal pain
• Abnormal heart rhythm such as rapid heart rate (tachycardia) or slow heart rate (bradycardia)
• Changes in skin
• Confusion or loss of consciousness for even a brief moment
• Difficulty breathing or rapid breathing
• Nausea with or without vomiting
• Fatigue
• Feeling very thirsty
• Frequent urination or decrease in urine output
• Fruity breath
• Muscle weakness
8.Cognitive impairment may accompany symptoms related to other problems, such as injury, stroke or dementia. These symptoms may include:
• Change in sleep patterns
• Changes in mood, personality or behavior
• Confusion or loss of consciousness for even a brief moment
• Difficulty with memory, thinking, talking, comprehension, writing or reading
• Impaired balance and coordination
• Loss of vision or changes in vision
• Nausea with or without vomiting
• Numbness, weakness or paralysis
• Seizure
• Severe headache
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA9vJgaBT45bxDLolVygb9X9ZvspoapvzaF8Bgl-Iliue7hhehuPsBhu3qNi390T_wQoXruC9i-lbe7nQN4T0NnMcbfkRi9_xXZ5vMt8YPu9JJCzaUq-G-HSp4eLQ1D15wyYvPA00teaGk/s1600/theymisunderestimatedme.png" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="240" width="299" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhA9vJgaBT45bxDLolVygb9X9ZvspoapvzaF8Bgl-Iliue7hhehuPsBhu3qNi390T_wQoXruC9i-lbe7nQN4T0NnMcbfkRi9_xXZ5vMt8YPu9JJCzaUq-G-HSp4eLQ1D15wyYvPA00teaGk/s400/theymisunderestimatedme.png" /></a></div>Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-48344076589423046882012-03-22T22:16:00.001-06:002012-03-22T22:16:52.704-06:00Freedom of Speech: Pharma is watching, Who Else?Social websites are popular, very popular. Facebook is the number one watering hole for people from all walks of life. Along with Twitter, Linked In, Stumbleupon and countless other social sites, Facebook fills a need for human connection. Much of it is fun and engaging. Some of it is dangerous. They have complete control over advertising and content. For this and other reasons I have decided to pull out my old Domain name and start a fresh website about my journey through MS/CCSVI. I can’t talk on Facebook about many things. Soon I will not need to worry about it.
2&1/2 years ago I began keeping copious notes and downloading information about CCSVI, Social medical Sites, Pharma Café MS websites …well you get my drift. Once a respected member of a “social Medical Site” specifically , “Patients like Me”. A few of us there began to question the motivation behind these sites, advertised as free support sites for people with MS and other chronic conditions. They have graphs, medical information , and other resources all tied neatly in one place for people to educate themselves about MS. Most importantly it is free and provides the one thing that most MS’ers crave: validation. Members talk about everything from parenting to recipes. The administrators are primarily interested in gathering information for Big Pharma. This particular website prides itself on “transparency”. They are quick to explain that they are a for profit website and sell information to anyone who will pay for it. There is not another entity that does more research on people with Multiple Sclerosis than the drug companies. Lilly forks over a pretty penny to find out what patients have to say about their drugs.
In addition to what is in my opinion unscrupulous harvesting of personal information, there are other interested trolls. Many of the links tucked away in an encrypted folder are no longer active websites. Some have changed their names or slipped back into the outer darkness of the World Wide Web.
What follows I thought might be of interest. Here is a sample of the information we willingly provide for all to peruse. These are drug companies keeping an eye on their lab rats. All of this was available to anyone online, including names, and personal information. I have at least 200- 300 pages of similar material. This was among the most innocuous. This is copied and pasted. I didn’t edit it other than to highlight a few lines in yellow.
Social networking for pharmaceutical companies (PLM)
Friday, November 05, 2010
5:44 PM
Social Media Monitoring and Measurement in the Pharmaceutical Industry - Document Transcript
1. Social Pharmalytics Betaseron Sample Buzz Report March 1 2010 - June 7 2010
2. Social Pharmalytics Table of Contents Buzz Analysis 2 Betaseron Influencers 2 Multiple Sclerosis Communities 2 Pharmacovigilance 3 The Liberation Treatment 3 Competition 3 Sentiment 4 Recommendations 4 Quantitative Insight 5 Filtered Quantitative Insight 5 Unfiltered Quantitative Insight 9 Important Buzz Excerpts 14 Neutral/Mixed Sentiment 14 Positive Sentiment 17 Negative Sentiment 21 1
3. Social Pharmalytics Buzz Analysis “Buzz Analysis” comments on top-level findings from our research. Betaseron Influencers There are certain members of the Multiple Sclerosis community that are considered “influencers.” They tend to speak often about Multiple Sclerosis, and the drugs surrounding treatment. We are monitoring these individuals, as they are a consistent form of information regarding Betaseron conversations online, and their opinions tend to be seen by large numbers of people. Phyllis Connor Sealshttp://www.facebook.com/profile.php?id=100000064088923&ref=ts Phyllis is active in responding to people asking about Betaseron and Avonex on the National Multiple Sclerosis Facebook page. She advocates the use of Betaseron because of the benefits of subcutaneous vs. intramuscular injections. “Stan”http://blogs.myspace.com/stansangels Stan runs a Multiple Sclerosis support group on MySpace, visible by over 3,600 people. Presumably a large percentage of these people are concerned with Multiple Sclerosis, and thus it is a highly visible location for those seeking information on MS and drugs that treat MS. Two discussions highlighted in “Important Buzz Excerpts” below (pages 16 and 26) are from this blog. Multiple Sclerosis Communities There are a large amount of Multiple Sclerosis communities online. These communities are varied in form and content. These communities can be used for (1) online advertising, (2) informational outreach, and (3) market research. Find the complete list of Multiple Sclerosis communities in Appendix A 2
4. Social Pharmalytics Pharmacovigilance In the online conversations we found, the following side effects to Betaseron were mentioned: - Depression (pg.25) - Knots (pg.16) - Sickness/flu-like symptoms (pg.16 & 21) - Weight-loss (pg.26) - Even though patients should not use Betaseron when pregnant, there were several comments that mentioned accidental or inadvertent use while the patient was pregnant, with no noticeable side-effects. The Liberation Treatment In M.S. communities, we uncovered several discussions regarding the “liberation treatment.” http://liberation-treatment.com/ Although the volume of discussions is low, MS patients are certainly conversing about the Liberation Treatment online, and some are recommending it to others. We did not initially track sentiment regarding this, as it is not a direct competitor, but we can do more research to uncover the breath of these discussions and their overall nature if necessary. Competition - In Anderson, South Carolina, Tysabri sales rep and neurologist are hosting sessions to pitch Tysabri and speak negatively regarding the competition. This resulted in negative online conversations regarding Tysabri. - Betaseron has a competetive advantage over Avonex because some people prefer subcataneous injections over intramuscular. - An often quoted competetive weakness of Betaseron is the frequency of injections compared with other drugs. 3
5. Social Pharmalytics - A great deal of MS patients mention doing their own research. This highlights the necessity for accurate (ideally third party) information online that can substantiate the advantages of Betaseron. - A competetive advantage of Betaseron stated by consumers online is that it does not need to be refrigerated. - Some MS patients are under the impression that Copaxone has “barely any side effects.” We found this specific sentiment mentioned more than 3 times in the specified date range. - Online conversations regarding Betaseron are significantly lower than the competition. Tysabri and Copaxone each have over 3x as many mentions as Betaseron. Sentiment In the last three months, there is more positive sentiment (19%) than negative sentiment (11%) in the conversations regarding Betaseron online. If we perform a buzz scan for a larger date range, we can assess the trends regarding online sentiment of Betaseron. There are also extremely negative comments (especially pg.26) regarding Betaseron. See “Important Buzz Excerpts” below for poignant comments regarding Betaseron. Recommendations - Focus on the www.patientslikeme.com community for further monitoring. Automated aggregators cannot access this information because a subscription is required, but manual monitoring is possible. - Perform a “Buzz Scan” going back as far as possible, to determine trends in conversations relating to Betaseron over time. - Focus Betaseron online research on Marketing threats/opportunities, Pharmacovigilance issues, and Customer Service issues, as opposed to a broad search, which will allow for increased efficiency. - Evaluate the volume and sentiment of conversatoins surrounding the “liberation treatment.” 4
6. Social Pharmalytics (Filtered) Quantitative Insight This section shows graphs compiled based on our filtered data set. The mentions analyzed in this section have all been reviewed for accuracy by our team. Buzz Volume This graph shows the volume of mentions of “betaseron” or “beta seron” over the last 3 months. Analysis: The recent spike in mentions is mostly due to mentions on Twitter regarding the “myBETAapp” Betaseron mobile app. These mentions are overwhelmingly neutral and are mostly news-related. 5
7. Social Pharmalytics Topic Cloud This graph shows the popularity of certain terms that are mentioned in conjunction with “Betaseron” or “Beta Seron.” Analysis: Betaseron Competitors are obviously often mentioned in conjunction with Betaseron. In genral, there are few unexpected topics mentioned in conversations that mention Betaseron. 6
8. Social Pharmalytics Media Channel Distribution This graph shows the distribution of mentions across different social media channels. Analysis: Blogs are by far the most-used means of online discussion regarding Betaseron. Most of the blogs mentioning Betaseron fall into three categories: news, aggregation, and personal. Personal blogs are the most important, providing mentions that are credible and that spark discussion. 7
9. Social Pharmalytics Buzz Sentiment This graph shows the distribution of positive vs negative vs neutral mentions of betaseron. These mentions are first aggregated and analyzed by an automated tool, then each mention is individually reviewed by an analyst at Social Pharmalytics. Analysis: Mentions regarding Betaseron are overwhelmingly neutral, due to RSS news feeds on blogs and microblogs. Most negative mentions are in regards to individual side effects, and are not particularly poignant. The most pertinent positive and negative mentions are included and specifically highlighted in this report. A full list of mentions regarding Betaseron can be found in Appendix B. 8
10. Social Pharmalytics (Unfiltered) Quantitative Insight This section shows graphs compiled based on our unfiltered data set. Therefore, every mention in this data has not been reviewed for accuracy. We conservatively estimate our unfiltered accuracy to be at 70% - 75%. Discussion Volume: Competition Analysis: Of the four MS drugs above, Betaseron has the lowest volume of discussion online. The most- discussed are Tysabri and Copaxone, each with more than 3x the mentions of Betaseron. 9
11. Social Pharmalytics Discussion Sentiment: Competition The graphs below compares sentiment of Betaseron competitors online. Note that graph scales are not proporionate. Avonex Betaseron 10
12. Social Pharmalytics Tysabri Copaxone Analysis: Avonex has more than twice as many negative discussions than positive discussions, giving it the worst sentiment ratio. Betaseron and Tysabri have the highest sentiment ratios, but the Tysabri statistic is more meaningful because there are more mentions overall. 11
13. Social Pharmalytics Analysis: Facebook is a large source of conversations relating to Betaseron. The majority of Betaseron discussions come from the US, but there are a significant amount of discussions from the UK, Canada, and Germany as well. 12
14. Social Pharmalytics Analysis: These statistics are only available from a small number of conversations, and thus should be taken lightly. That said, based on this data, females are much more likely than males to write something online about Betaseron. Such gender data is not surprising, because women are more likely to contract MS. All of the conversations where age could be measured fell into the 36-50 age range, with a majority in the 36-40 range. 13
15. Social Pharmalytics Important Buzz Excerpts April 25 - May 25 Author Name: Will & Sara Collier-Byrd Country: US (South Carolina) Relationship to Betaseron: Sara was diagnosed with MS in Dec. 2008 Contact Links: http://www.collier-byrd.net/contact-us/, http://twitter.com/collierbyrd Link: http://www.collier-byrd.net/2010/05/13/adventures-in-neurologists-peddling-pharmaceuticals/ Date Published: May 13, 2010 at 11:20 AM Media Type: Blog Sentiment: Neutral Excerpt(s): “AnMed hospital in Anderson, SC to attend an MS event my parents had alerted me to called Dialogue of Hope and Health.” “It turned out to be something between a sales pitch and damage control conducted by a local neurologist and a Tysabri sales rep.” “The meeting started with him saying no one can tell you what drug to take, but the message that followed was very different. Essentially, the message was that interferons and betaseron are bad and don’t work and that the new oral drugs (Cladribine and Fingolimod) kill you with cancer and infections. That marijuana has no effect on MS symptoms and that people just like to get high. We were all but promised that people don’t die from PML and that MS patients no longer have any attacks once they’re on Tysabri. Following the doctor/patient bullying session, the sales rep came over to give me his expert medical advice. The whole event left me seething. If I decide to take the risk and go on Tysabri it isn’t going to be the result of the 3 questionable men running the show last night. PML is a scary thing and no one should be mocked for fearing it. The statistics presented last night (if you can trust them) are that only about 1/4 of people on Tysabri who develop PML will die from it, but the rest will be left with permanent disability ranging from mild to the need for life support. 1/1000 Tysabri users will develop PML and your chance of developing it increases with use.” Screenshot: 14
16. Social Pharmalytics Name: “Poppstarr” Sex: Female Relationship to Betaseron: Currently taking Rebif Link: http://community.dooce.com/support/okay-so-2010-apparently-not-my-year-anybody-ms-multiple-sclerosis- stories-more-inside%E2%80%A6#comment214107 Date Published: May 24 2010 Media Type: Question/answer site Sentiment: Neutral Notable: Promoting the “liberation treatment” Excerpt(s) : “There is a new 'radical' therapy that hit the web recently. Here is a link about it: http://watch.ctv.ca/news/w5/the- liberation-treatment/#clip237617 I haven't had a chance to talk with my doctor about it yet, but believe you me, I am and will.” Screenshot: 15
17. Social Pharmalytics Name: “Pretty” Sex: Female Relationship to Betaseron: Author will start Betaseron in a few weeks Link: http://blogs.myspace.com/index.cfm?fuseaction=blog.view&friendId=81189575&blogId=533967659 Date Published: May 6, 2010 4:37 PM Media Type: Blog Sentiment: Mixed comments Notable: Very popular blog - “422,447 Visitors! WELCOME TO THE BLOG: 6,121 Stories with 43,674 Comments & Tips!” Excerpt(s) (multiple authors): “You could check this out perhaps:::“A lot of people are taking beta interferons who should not be and it may make them actually worse,” Lawrence Steinman, a neurology professor at Stanford University near Palo Alto, California, said in a March 25 telephone interview.” “I spoke to a nurse about early March of 2010 and when I complained of how lousy the Avonex made me feel (I've been using Avonex since... See More 1998 and it always gave me flu like symptoms for 2 to 3 days) she recommended eating fresh (unprocessed) pineapple... before (about an hour to ninety minutes BEFORE) I inject because it has an enzyme in it (Bromelain) that helps lessen the side effects significantly, particularly if I nap after injecting. FYI: It is a natural anti- inflammatory. She also told me it had to be fresh (but I did have one MSer tell me she used canned and felt it still helped). I find that the more pineapple I eat, the more it helps.” “I Have been on Beta seron for 15 years. I do have the knots but I am still walking and have never veen in the Hospital. Talk to your nurse about the knots but never forget to take the shot.” “I've been on it for almost two years. I don't get the flu-like symptoms as bad as I used to when I first began. However, I hate the frequency of the shots and the skin reactions stick around weeks after the shots. I look like I've been beat up. It's hot right now and I cannot wear shorts! :( But my neuro says the Beta is working.” “I LOVE IT !! IT WAS THE FIRST ONE TRIED ON ME AND I HAVE HAD NO MORE LESIONS SINCE STARTING IT [...] YES, THE HAVE A 24/7 NURSE WHO WILL ANSWER ALL YOUR QUESTIONS [...] I HAVE HAD NO PROBLEMS SINCE AND LOVE THE NEWER SMALLER NEEDLES. I DON'T EVEN FEEL THE INJECTION UNLESS ONCE IN A BLUE MOON I GET A DULL NEEDLE” Screenshot: 16
18. Social Pharmalytics Name: Tina Beck Sossomon Sex: Female Country: US Relationship to Betaseron: Started Betaseron April 29, 2010 Links: http://www.facebook.com/nationalmssociety/posts/383812914314,http://www.facebook.com/ nationalmssociety/posts/383812914314#!/nationalmssociety?v=wall&story_fbid=383812914314 Date Published: April 28, 2010 at 10:29pm Media Type: Facebook Wall Message to “National Multiple Sclerosis Society” Sentiment: Positive Excerpt(s): “My Betaseron arrived via UPS this morning, and my training session is scheduled for tomorrow night. I'm scared (of the needle) and excited (for getting the prevention ball rolling) at the same time.” “That left me teetering between the Betaseron every other day and another one that's give 2-3 times a week. After weighing the pros and cons of those two meds, I ended up choosing the Betaseron. Betaseron meant getting stuck with a needle a few extra times a month, but the Betaseron pokes are reportedly less painful than the 2-3 times a week shot. That was my deciding factor. [...] I was pleasantly surprised to find out that the Betaseron does not need to be refrigerated. :)” Screenshot: 17
19. Social Pharmalytics Name: Phyllis Conner Seals Age: Unknown Country: US (East Peoria, Illinois) Relationship to Betaseron: Took Betaseron at one point Contact: phyllas1@aol.com, Link:http://www.facebook.com/nationalmssociety/posts/383812914314 Date Published: April 28, 2010 at 11:18pm Media Type: Facebook Comment on Wall Post (referenced above) Sentiment: Positive Excerpt(s): “Had to do my own research, then found a couple of videos and decided on Beta because I was more comfortable with subcataneous injections instead of intramuscular. But that's just me.” Screenshot: 18
20. Social Pharmalytics Name: Phyllis Connor Seals Country: US (East Peoria, IL) Link:http://www.facebook.com/topic.php?uid=70484114314&topic=16539 Date Published: May 27 2010 at 2:37pm Media Type: Facebook Discussion Sentiment: Positive Notable: Competetive Advantage Excerpt(s): “Thanks Aiiwa. I made the choice for Betaseron over Avonex (the 2 choices my neuro first gave me) because I thought I'd personally do better with subcataneous over intramuscular.” Screenshot: 19
21. Social Pharmalytics Name: “LostInChicago” Sex: Female Relationship to Betaseron: Father is taking Betaseron Link: http://community.dooce.com/support/okay-so-2010-apparently-not-my-year-anybody-ms-multiple-sclerosis- stories-more-inside%E2%80%A6#comment213288 Date Published: May 23 2010 Media Type: Question/answer site Sentiment: Extremely Positive Notable: Raving review about how Betaseron has changed her family for the better Excerpt(s) : “He has been taking Betaseron for over 12 years. The shot has changed his life. Prior to it, he would have severe attacks every other year or so. He hasn't had one since!” “I love Betaseron, & what it's enabled our entire family to do by stabilizing MS.” Screenshot: 20
22. Social Pharmalytics Name: Luciana Venezia Hernandez Sex: Female Relationship to Betaseron: Was using Betaseron but switched to Copaxone because of liver issues Link:http://www.facebook.com/nationalmssociety?v=wall&story_fbid=392628329314 Date Published: May 26 2010, 12:19am Media Type: Facebook Fan Page Wall Sentiment: Negative Notable: Comment asserts that Copaxone is better suited for a young adult lifestyle because of the injection schedule Excerpt(s) : “I was on Betaseron but it started to effect my liver but i was great on it other than liver issues, copaxone i find, much easier. Heres why, betaseron is supposed to be taken at night to avoid any flu like symptoms, seeing how we are young & in our prime, i just found it interfered with my nightlife. :) you have to mix it, then if shot night lands on date night i found myself rushing home & not being able to enjoy myself. But with copaxone its just part of my morning routine. Breakfast, shower, shot, brush teeth then off to the gym or yoga, etc. Very easy.” Screenshot: 21
23. Social Pharmalytics Name: Ruben Adjip Sex: Male Relationship to Betaseron: Currently taking Betaseron Link: http://www.facebook.com/ruben.adjip?v=wall&story_fbid=122843301073900&ref=mf Date Published: May 17 at 2:28am Media Type: Facebook Status Update Sentiment: Negative Notable: 233 friends may have seen his comment Excerpt(s) : “Not a good med night, tired of taking this Betaseron...” Screenshot: 22
24. Social Pharmalytics Name: Angie Glenn Holmes Sex: Female Relationship to Betaseron: Recently started taking Betaseron Links: http://www.facebook.com/profile.php?id=1118809194&v=wall&story_fbid=120786307953389&ref=mf, http:// www.facebook.com/profile.php?id=1118809194&v=wall&story_fbid=124257254270280&ref=mf Date Published: May 18 2010 at 4:46pm Media Type: Facebook Status Update Sentiment: Negative Notable: Extremely negative comment. “FML” is an acronym for “Fuck My Life” Excerpt(s) : “I know this shit is gonna hurt, its the same as avenox but just more frequently, and that shit makes me sick every week. I’d rather drag my fuckin leg” Screenshots: 23
25. Social Pharmalytics Name (blog owner): Dr. Cameron Jackson Age: Unknown Country: US (CA) Contact:drcameronjackson@gmail.com 831 688-6002 P.O.Box 1972, Aptos,CA 95001-1972 Link:http://freedomok.net/2010/05/coffee-worsens-ms-symptoms-one-man-with-ms-says-so/ Date Published: (blog post) Sunday, May 16th, 2010 at 5:30 pm (comment) November 30, 2009 @ 10:11 am PST Media Type: Blog Sentiment: Negative Notable: Over 50 comments Excerpt(s): “As I have had MS for 14 years, take injections every other day, for 14 years at now, at cost of 2400.00/month for one med. Most of you can go ________. I am in luck though, with exercise, diet, family and attitude, I am completely mobile. I can not say it is due to the fact of betaseron, it only slows the progression, I wouldn’t know, I’ve never been off the stuff. I do know the shots hurt, that’s where the attitude goes bad.” Screenshot: 24
26. Social Pharmalytics Author: “musicman” Author: Unknown Country: Unknown Relationship to Betaseron: Been on Betaseron for 3 months Link: http://www.thisisms.com/ftopict-11551.html# Date Published: Wed May 05, 2010 2:44 pm Media Type: Forum Thread - Initial Author Sentiment: Negative Excerpt(s): “I have been experiencing an increase in depression since I started Betaseron. It's been three months now and my mood has steadily declined.” Screenshot: 25
27. Social Pharmalytics Name: “Cherokee Girl” Sex: Female, 56 y/o Relationship to Betaseron: Had an adverse reaction to Betaseron Link: http://blogs.myspace.com/index.cfm?fuseaction=blog.view&friendId=81189575&blogId=533749048 Date Published: May 2 2010 at 4:24pm Media Type: Blog comment Sentiment: Extremely negative Notable: Says that the Dr. heard bad things about Betaseron Excerpt(s) : “THE DR. SWITCHED ME TO BETTASERON, THAT ALMOST KILLED ME I HAD LOST 75 LBS. FAST. THE DR. CALLED ME AND SAID DO NOT TAKE ANYMORE BEATTSERONE BECAUSE HE HAD READ SOME BAD THINGS ABOUT IT. HE DETOXED ME AND HAD NO CHOICE BUT TO PUT ME BACK ON COPAXONE, THAT WAS 13 YRS AGO AND AM SO HAPPY HE DID BECAUSE I AM DOING FANTASTIC ESPECIALLY SINCE THEY CAME OUT WITH THE SMALLER NEEDLE. “ Screenshot: 26Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com2tag:blogger.com,1999:blog-4778975207510847726.post-18024981633268867282012-03-16T19:54:00.004-06:002012-03-16T19:54:35.128-06:00Baclofen and other anti-Spasmodics versus MagnesiumMuscle Spasticity & Baclofen:
Baclofen and Zanaflex are two medications prescribed every day for muscle spasticity or spasms and tremors. They both can relieve this frustrating MS symptom but long term use can cause the muscles to weaken and become flaccid.
Baclofen is a muscle relaxant that works by inhibiting the reflexes at the spinal cord level. It is not selective for just hyperactive reflexes, however. It inhibits or depresses many aspects of the central nervous system. As a result, it can be effective at reducing severe muscle spasticity, but it also produces common side effects such as drowsiness, dizziness, slurred speech, and confusion. New, long-term side effects revealed by several studies are muscle weakness and fatigue.
Use of baclofen with other drugs that also depress the function of nerves may lead to additional reduction in brain function. In addition to the risk of depressing brain function, the use of baclofen and tricyclic antidepressants ( amitriptyline ,Elavil, Endep, doxepin Sinequan, Adapin together causes muscle weakness. Low blood pressure is another side effect to consider even short term.
Diabetics will need to make adjustments in their glucose control as baclofen can substantially raise blood glucose levels.
Baclofen may cause drowsiness, weakness, dizziness, headache, seizures, nausea, vomiting, low blood pressure, constipation, confusion, respiratory depression, inability to sleep, and increased urinary frequency or urinary retention. It is well known that too much anti-spasmadics can lead to muscle atrophy. One recent study showed that 27% of patients who used baclofen for over 1 year developed muscle atrophy , primarily in the calves and thighs.
There are safer alternatives. Magnesium is an OTC supplement that can reduce muscle spasms. Magnesium has been used widely for clinical manifestation of muscle cramps, with good success. Research has shown that it is not just deficient individuals that benefit from supplementation, rather it has been hypothesized that everyone can benefit from its ability to stabilize cellular membranes. Magnesium is critical to cellular functioning in terms of energy production, cell reproduction, and protein formation. It is essential for energy production. A blood test is needed to determine the blood magnesium level before starting magnesium supplements. If the blood level is low or even normal, then body magnesium stores may be low. Unfortunately, a normal blood level does not ensure that body magnesium stores are adequate. The RDA is below what the body needs to relieve spasticity. Too much can cause diarrhea. For people taking medications to relieve MS symptoms, that could actually be a plus as many of them cause constipation.
Because of the effectiveness of magnesia and muscle cramps it is often given in the doctor’s office intravenously.
Magnesium is an important element in the body because it activates or is involved in many basic processes or functions, like:
1. Cofactor for over 300 enzymes;
2. Oxidation of fatty acids;
3. Activation of amino acids;
4. Synthesis and breakdown of DNA;
5. Neurotransmission;
6. Immune function;
7. Interactions with other nutrients, including potassium, vitamin B6, and boron.
500 mg three times a day is a reasonable dosage, however the blood testing should be done first.
CAUTION: Abrupt discontinuation of oral baclofen may cause seizures and hallucinations. Abrupt discontinuation of intrathecal baclofen may result in high fever, rebound spasticity, muscle rigidity, and muscle breakdown that can progress to failure of several organs, including the kidney, and even death. If you are taking Baclofen regularly you have to taper off not try to do it cold turkey. In the meantime, the magnesium can be stared before you discontinue baclofen.
http://www.themiamiproject.org/Document.Doc?id=196
Magnesium information:
In a recent study analyzing the diet of 564 adult Americans, both male and female, the average intake of magnesium was less than two-thirds of the RDA for men and less than 50% of the RDA for women. This means that men, on average, are getting under 200 mg. magnesium daily and women get under 150 mg. per day. When you take into consideration the current RDA is less than half of the probable adequate amount of magnesium you begin to see the scope of the deficiency problem.
How to Take Magnesium and What Kind of Magnesium to Take:
SPECIAL NOTE ON CALCIUM- High calcium intake may block uptake and utilization of magnesium. Current available research seems to indicate that calcium intake be twice than or equal to magnesium intake. In spite of publicized research proclaiming high calcium intake as a positive health factor, in-depth review of research shows that high calcium intake contributes to many degenerative diseases and is a health risk factor.
IMO magnesium chelates as the only reliable sources to replete magnesium. Magnesium is available in chelated (bound to) combinations such as alpha-ketogluconate, aspartate, glycinate, lysinate, orotate, taurate and others. Inorganic or ionic magnesiums include sulphate, oxide, citrate, carbonate, bicarbonate and chloride. Some supplement companies make so-called chelated magnesiums but the chelate (bound to) is partial and the raw material contains some percentage of ionized, unbound or inorganic magnesium. Ionized magnesium may cause diarrhea in many users and, therefore, not correct a cellular magnesium deficiency. Diarrhea, or soft stools, caused by any form of magnesium can make a magnesium deficiency worse.
The best food sources of magnesium are chocolate, nuts, seeds, and deep, dark, leafy greens.
Magnesium should be taken with your other supplements and/or food. Split your supplemental intake into 2 or more doses daily. Some magnesium supplements can be energizing and in some persons may have a negative impact on getting to sleep and staying asleep when taken near bedtime. If taken in the correct dose and early enough in the day magnesium often corrects insomnia. Taking magnesium late in the day is not a problem if it does not adversely affect your sleep.Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com2tag:blogger.com,1999:blog-4778975207510847726.post-38835540547185246672011-10-30T12:31:00.003-06:002011-10-30T12:31:57.628-06:00Posted by Linda J. Rousay on October 30, 2011 at 11:29am
View Blog
http://articles.mercola.com/sites/articles/archive/2011/10/30/the-greater-good.aspx?e_cid=20111030_SNL_Art_1
If you watch no other video , please watch this. It was released today. This is NOT an anti-vaccine blog. On the contrary, it is a central view about our vaccination programs. This is not limited to flu. It is all encompassing. Vaccinations for us and for our children are necessary. It is the informed consent that is the problem. This is long, but the most comprehensive , all encompassing presentation I have ever seen on this issue. As PwMS/CCSVI we are a targeted group for ill advised vaccinations. This provides both sides of this issue so you can make informed decisions, not frantic ones.
I am an activist in several areas, but I am NOT an alarmist. I also am not a Prima Donna and I don't want any special attention. I want healthy people, especially those whose lives have crossed my life through MS and CCSVI. This is a long documentary. Mainstream media is involved in this presentation, not just some off the wall naturalist or anti-establishment underground publication.
Be well.
This video is available free until November 5th only!Anonymoushttp://www.blogger.com/profile/01495519680045333652noreply@blogger.com0tag:blogger.com,1999:blog-4778975207510847726.post-59977804927153390992011-09-10T18:19:00.001-06:002011-09-10T18:19:59.561-06:00Pharma & Social NetworkingBrand Sponsored Patient Communities
Communities created by a pharma or healthcare company for a brand or corporate effort
Search:
Program Type Name Description
Brand Sponsored Patient Communities 23andMe
23andMe – a unique mix of social networking and genetics supported by community (thanks to Arthur Alston)
Brand Sponsored Patient Communities Accu-Check Diabetes Link
Accu-Check Diabetes Link — “Diabetes Link is a Website dedicated to helping people with diabetes gather information, learn important facts and enjoy healthy lifestyles. Whether you’re here to see what your favorite diabetes bloggers are talking about, get a better idea of what your numbers mean, or look into the progress toward a cure, you’ve come to the right place.” Aggregates tweets and blog posts from diabetes info sources including prominent bloggers
Brand Sponsored Patient Communities Alli Circles
Alli Circles — support community for Alli, weight loss product from GSK
Brand Sponsored Patient Communities BETAPLUS
BETAPLUS — support community/program for Bayer’s Betaseron featuring a peer mentor program
Brand Sponsored Patient Communities C2C: Connect to Conquer Epilepsy
C2C: Connect to Conquer Epilepsy — from Valeant, sub-part of EpilepsyEmpowerment.com. Users share stories one on one after trading email info. Nothing is posted on the site, so avoids liability for brand.
UPDATED Brand Sponsored Patient Communities Arimidex Celebration Chain REMOVED
Brand Sponsored Patient Communities CF Voice
CF Voice — “An online community for people of all ages living with cystic fibrosis. A place for motivation, inspiration and connection to the CFcommunity.” Sponsored by Novartis, won 2008 “Best Website” award from MM&M
Brand Sponsored Patient Communities Children with Diabetes
Children with Diabetes — “The mission of Children with Diabetes, Inc. is to promote understanding of the care and treatment of diabetes, especially in children; to increase awareness of the need for unrestricted diabetes care for children at school and daycare; to support families living with diabetes; and to promote understanding of research into a cure.” Purchased by J&J in 2008 for a reported $6-7 MM
Brand Sponsored Patient Communities CML Earth
CML Earth — “CML Earth is a global, interactive social network dedicated to connecting the CML community from around the world.” Created by Novartis Oncology
UPDATED Brand Sponsored Patient Communities Crohn’s and Me
Crohn’s and Me — Unbranded site from UBC Pharma supporting yet-to-be-launched Cimzia, good overall disease information and features and active community
Brand Sponsored Patient Communities DepNet
DepNet — “DepNet is a Community on the Internet where people affected by depression and related diseases have the opportunity to meet and exchange experiences as well as finding information and help. DepNet is also a tool to support and help relatives.” Sponsored by Lundbeck.
Brand Sponsored Patient Communities Diabetes Handprint
Diabetes Handprint – program that encourages people to share a message (as a handprint) about their diabetes with the community, sponsored by OneTouch (thanks to Fabio Gratton)
Brand Sponsored Patient Communities Epilepsy Advocate
Epilepsy Advocate — Epilepsy Advocates are a community of people and their families living with all types of epilepsy. Get to know the inspirational stories of Epilepsy Advocates, people like you who are finding ways to take control of their epilepsy and their potential. Sponsored by UCB, maker of epilepsy drugs Keppra and Vimpat.
Brand Sponsored Patient Communities Hearing Journey
Hearing Journey — Sponsored by hearing implant company, small community, but active.
Brand Sponsored Patient Communities Heroes of Hope
Heroes of Hope — “The Heroes of Hope program is sponsored by Genentech, Inc., to recognize and salute unique individuals with cystic fibrosis who are stars in their own right for striving to live full and productive lives, and for being role models of hope to others, while continuing to manage their healthcare needs.”
Brand Sponsored Patient Communities HER Story Community
HER Story Community — For Herceptin from Genentech, allows women to share their story about breast cancer
Brand Sponsored Patient Communities How I Fight MS
How I Fight MS — Individual stories of MS patients including blogs, sponsored by EMD Serono (via Nicole Johnson)
Brand Sponsored Patient Communities iHateNeedles.co.uk
iHateNeedles.co.uk — EMLA consumer website (UK)
Brand Sponsored Patient Communities I Walk Because
I Walk Because — “Our goal is to create a place where people can share the power of the Walk MS experience with others. While I Walk Because documents Walk MS events, it also celebrates the spirit of walking and movement in general. Acorda Therapeutics has created this website as part of our strong commitment to people with MS and the broader community. I Walk Because is not administered by the National Multiple Sclerosis Society.”
Brand Sponsored Patient Communities GIST Earth
GIST Earth — “GIST Earth is a global, interactive social network dedicated to connecting the GIST community from around the world.” Created by Novartis Oncology, modeled after their successful CML Earth (via @andrewspong)
Brand Sponsored Patient Communities Lexapro iCAN
Lexapro iCAN – “iCAN.net.au is an internet support service for Lexapro patients suffering from depression and anxiety disorders. It is technically operated and maintained by H.Lundbeck A/S in Copenhagen. Access is limited to patients being actively treated with Lexapro (escitalopram) in Australia and New Zealand. Verification of active treatment will be obtained through the batch number on each Lexapro pack. Lundbeck is responsible for the entire content and is the primary point of contact for all further enquiries.”
Brand Sponsored Patient Communities Living with Hemophilia
Living with Hemophilia — “Bayer HealthCare LLC developed this Web site to share some practical tools that we hope will help you manage life in today’s busy world. Although hemophilia is part of your life, we want to make sure that hemophilia does not become your life. This Web site is designed to give you time-saving tips and strategies for living with hemophilia, and making life a little easier.”
Brand Sponsored Patient Communities myMSmyWAY
myMSmyWAY — “It was created out of a collaboration between Bayer Healthcare, Microsoft and the National MS society” Thanks (and more details) via WhyDotPharma.
Brand Sponsored Patient Communities MS Gateway
MS Gateway – “If you live with Multiple Sclerosis and want to meet like-minded people, the MS Gateway Community is the place to be. This online community puts you in touch with other people living with MS so you can discuss ways of coping with MS in everyday life and at work. Participation is free, but you do need to become a registered user.” Sponsored by Bayer.
Brand Sponsored Patient Communities MS Village
MS Village — “MS Village is a Canadian, bilingual education program and online community that provides the opportunity to connect with peers and share valuable information and support for people with MS and people affected by MS.”
Brand Sponsored Patient Communities MSWatch
MSWatch –”MSWatch.ca provides the Canadian Multiple Sclerosis community a place to openly learn, discuss and share anything and everything to do with MS.” Note: Canadian-based site focused on MS, sponsored by Teva
Brand Sponsored Patient Communities Official Sponsor
Official Sponsor — ” is about identifying what you need to pursue the thing you love best. In return, we expect you to give it your all. And share how Prilosec OTC supported your passion.”
Brand Sponsored Patient Communities Pulmozyme Community
Pulmozyme Community - "a place for people of all ages to connect and learn about life with cystic fibrosis. There are stories, games, links, tips, and much more.
For those 13 and over, you can also read about inspiring individuals with cystic fibrosis who have taken charge of their lives through a healthy diet, consistent exercise, and a faithful adherence to their medical regimen" (via @roskadigital)
UPDATED Brand Sponsored Patient Communities PEER Network
PEER Network — “United Therapeutics Corporation, the developer of Remodulin (treprostinil sodium) Injection, established the PEER (Patients Exchanging Experiences with Remodulin) Network – to enable you to exchange private, one-to-one emails with a Remodulin patient and hear about his or her personal Remodulin therapy experiences.” (via @arlyi)
Brand Sponsored Patient Communities PKU.com
PKU.com — support community for patients with PKU sponspored by Biomarin, maker of PKU treatment Kuvan
Brand Sponsored Patient Communities Strength for Caring
Strength for Caring "The Johnson & Johnson Caregiver Initiative is a pioneer in the emerging field of family caregiver support and StrengthForCaring.com (SFC) is the cornerstone of this important program. SFC is a comprehensive website designed to provide family caregivers with a broad range of expert content and information, an emerging on-line community, daily inspiration, and much needed support." via @thegsquared
Brand Sponsored Patient Communities Voices of Diabetes
Voices of Diabetes — Novo Nordisk site that allows diabetics to share their stories and comment on others’
Brand Sponsored Patient Communities Voices in PAH
Voices in PAH "Whether you're someone living with pulmonary arterial hypertension (PAH), a healthcare professional, or an advocate, you have something to say about PAH. And we want to hear it. Share your insights so we can continue to provide resources that are of benefit to you." from Gilead (via @arlyi)
Brand Sponsored Patient Communities Walking Spree
Walking Spree — “WalkingSpree is focused on delivering a best-of-breed online wellness program by incorporating the valuable features from online pedometer based programs, online social networking programs and online weight-loss programs.”
Brand Sponsored Patient Communities We Keep Moving
We Keep Moving--"a disease awareness campaign built through community outreach and involvement. This is a new twist on patient testimonials, designed as a nationwide tour to document the stories of people living with MS with the objective of building a community to empower these people to continue to live their lives--to overcome obstacles and move on. What's more, the trio leading this contest have MS." Created by Novartis. (via @jaeselle)
Brand Sponsored Patient Communities myRegence
myRegence -- created by Regence, a Blue Cross, Blue Shield insurance carrier. "My Community on myRegence.com is a nationwide, online health and wellness community where members can find expert advice, information and opinions on everything from work-out routines and parenting tips, to weight loss and disease management."
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Patient Communities (Non-Brand Controlled)
Communities created with no direct control by a pharma or healthcare company
Search:
Program Type Name Description
Patient Communities (Non-Brand Controlled) Accidental Sisterhood
Accidental Sisterhood--"We are dedicated to educating women on all things Pelvic Floor Health related. We provide info on overactive bladder, incontinence and other conditions that over 34 million women deal with daily."
Patient Communities (Non-Brand Controlled) ACOR
ACOR — Association of Online Cancer Resources includes a number of online support communities including sites such as Oncochat.org
Patient Communities (Non-Brand Controlled) Addiction Survivors
Addiction Survivors – “AddictionSurvivors.org is a not-for-profit organization (501c3 tax exempt status pending) dedicated to providing peer support communities for those with addiction disorders and their families and friends. These forums are funded in whole by individuals whose lives have been touched by addiction in one way or another.”
Patient Communities (Non-Brand Controlled) ADHD News Forum
ADHD News Forum — “Join our support group at the ADHD message boards with over 16,000 topics of discussion. Ask a question or connect with someone who is coping with ADHD like you.”
Patient Communities (Non-Brand Controlled) Advanced Breast Cancer Community
Advanced Breast Cancer Community — “The Advanced Breast Cancer Community is a comprehensive information source and online community solely dedicated to the needs of advanced (metastatic) breast cancer patients, caregivers, family and friends, and health care providers.”
Patient Communities (Non-Brand Controlled) American Diabetes Association
American Diabetes Association — Discussion board featured on diabetes.org, the home of the American Diabetes Association
Patient Communities (Non-Brand Controlled) Ask a Patient
Ask a Patient — patient provided drug ratings and reviews on almost all prescription products (via@roskadigital)
Patient Communities (Non-Brand Controlled) Autism 151
Autism 151 — “Autism 151 is a campaign to pull our community together and offer a brighter, more positive view of autism.” Features videos shared by the community.
Patient Communities (Non-Brand Controlled) BeWell.com
BeWell.com — “BeWell.com has unique, expert-guided communities where you have access to authoritative information about health topics that matter to you. You’ll participate in peer-generated conversations, connect with other people who have similar experiences and interests, and interact with well-known, highly regarded healthcare professionals.”
Patient Communities (Non-Brand Controlled) Body1
Body1 — “Body1 is a premier medical education and marketing company that educates targeted populations and provides interactive marketing tools for pharmaceutical, medical device manufacturers and biotechnology organizations.” (via@bunnyellerin)
Patient Communities (Non-Brand Controlled) BreastCancer.org
BreastCancer.org — “Breastcancer.org is a nonprofit organization dedicated to providing the most reliable, complete, and up-to-date information about breast cancer.”
Patient Communities (Non-Brand Controlled) The Canary Report
The Canary Report — “The Canary Report is the leading website dedicated to news, information and inspiration for people with Multiple Chemical Sensitivity and those who love them.”
Patient Communities (Non-Brand Controlled) Cancer Forward
CancerForward--"CancerForward: The Foundation for Cancer Survivors is a not-for-profit web-based networking and educational resource for cancer survivors. Comprised of communities of individuals with similar interests in cancer survivorship, the website is designed to provide a place where survivors can connect with other survivors and with healthcare professionals to share experiences, advice and information about disease-specific issues as well as health, wellness and practical living issues." via @shelleypetersen
Patient Communities (Non-Brand Controlled) Cancer Compass
Cancer Compass — “Within CancerCompass you’ll find a thriving community of more than 15,000 people connected to the latest cancer news, cancer information, decision support resources, and most importantly, each other.”
Patient Communities (Non-Brand Controlled) Cancer Survivors Network
Cancer Survivors Network – “Discussion boards are used to post questions, answers, or comments about various aspects of your cancer experience such as diagnosis, treatment, relationships, or taking care of someone with cancer.” This is part of the American Cancer Society’s website at cancer.org.
Patient Communities (Non-Brand Controlled) CancerTV
CancerTV — “CancerTV is the destination to share information and learn about cancer across the web. We encourage you to post your own original programming and share your experiences in our members’ forum. Institutions can also contribute content, such as educational videos, for broadcast to our global, connected audience.”
Patient Communities (Non-Brand Controlled) Care Flash
Care Flash — “CareFlash provides a common place on the Internet, to and from which people may submit, retrieve and share information and well-wishes surrounding a loved one’s health circumstances.”
Patient Communities (Non-Brand Controlled) COPD Foundation
COPD Foundation - The COPD Foundation is a 501-c-3 not-for-profit organization created on June 14, 2004, and headquartered in Miami, Florida. In such a short period of time, the COPD Foundation has accomplished so much, bringing together the resources in the COPD community and creating more opportunities in order to serve those affected by the disease. (via @bradatpharma)
Patient Communities (Non-Brand Controlled) Circle of Sharing
Circle of Sharing — “Circle Of Sharing helps cancer patients and their caregivers get personalized information about the disease, and share that information with family and friends.You can create a Circle Of Sharing for yourself, or create one on behalf of someone you’re caring for.” –From the American Cancer Society
Patient Communities (Non-Brand Controlled) Crazy Sexy Life
Crazy Sexy Life — “Crazy Sexy Life is a supercharged health hub filled with compassion, knowledge, and an anything-is-possible spirit. Our righteous mission is to bring together amazing resources and cutting edge experts in one easy to navigate hot spot.”
Patient Communities (Non-Brand Controlled) Crohn’s and Colitis Foundation of America
Crohn’s and Colitis Foundation of America — non-profit foundation site featuring discussion groups and forums
Patient Communities (Non-Brand Controlled) CureTogether
CureTogether — “CureTogether helps people anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research.”
Patient Communities (Non-Brand Controlled) CysticFibrosis.com
CysticFibrosis.com — “We are patients and families from all over the world, sharing our experiences with CF and gaining power over our disease and our futures. We are joined together to grow our knowledge and reach amazing goals. Please join our community and our movement–together we are building knowledge and reaching for a cure.”
Patient Communities (Non-Brand Controlled) Daily Strength
Daily Strength –”Most everyone has a serious personal challenge themselves or has someone close to them that does. DailyStrength is a collection of safe, anonymous, online support groups focused on over 500 specific challenges to help people overcome their personal challenge or support a loved one through theirs.”
Patient Communities (Non-Brand Controlled) Depression Forums
Depression Forums — “Depression Forums.org is a community support website soley dedicated to Depression and Mental Health.”
Patient Communities (Non-Brand Controlled) Depression Tribe
Depression Tribe — “While professional therapy and medication are a critical part of treatment, journaling and “talking” with others can offer many a chance to gain insight into their problems. DepressionTribe offers members a place to share stories, encouragement and friendship.”
Patient Communities (Non-Brand Controlled) Depression Understood
Depression Understood — “Depression Understood offers many ways in which like-minded people can communicate with each other and offer peer support to one another.”
Patient Communities (Non-Brand Controlled) Diabetes1
Diabetes1 — Created by Body1: “Body1 is a premier medical education and marketing company that educates targeted populations and provides interactive marketing tools for pharmaceutical, medical device manufacturers and biotechnology organizations.”
Patient Communities (Non-Brand Controlled) Diabetic Connect
Diabetic Connect –”We’re all friends here—friends who know what it’s like to live with diabetes. We make it easy to start conversations, share recipes, ask questions about diabetic products, and much more. Our hope is to give you the support and information you need to live a long healthy life with diabetes.”
Patient Communities (Non-Brand Controlled) Disaboom
Disaboom — “For people with disabilities, Disaboom’s lifestyle articles, blogs, forums, and health information provide shared knowledge about SCI, cerebral palsy, fibromyalgia, multiple sclerosis, and other disabilities. Whether you’re an amputee, caregiver, disabled veteran, or interested in exploring adaptive sports, accessible travel, or any other disability-related topic, welcome!”
Patient Communities (Non-Brand Controlled) dLife
dLife – “dLife is the only integrated consumer/patient education and marketing platform that effectively targets and engages the diabetes community. dLife has become the premiere model to help companies communicate, educate and interact with millions of diabetes patients, consumers and caregivers.”
Patient Communities (Non-Brand Controlled) DoubleCheckMD
DoubleCheckMD — “The first-ever online medical search technology that empowers users to quickly and easily find accessible, accurate information on drug interactions and their side effects.”
Patient Communities (Non-Brand Controlled) eDrugSearch
eDrugSearch — “eDrugSearch.com launched in January 2007 as a specialized search engine for Americans interested in purchasing safe, low-cost prescription drugs from prescreened international pharmacies.” The site also features a community where users can rate drugs and also discuss various treatments.
Patient Communities (Non-Brand Controlled) eHealthMe
eHealthMe — “eHealthMe is a platform to share and make use of drug outcomes in real world and in real time. Our user reports of drugs and conditionshave surpassed those on WebMD and other major health care websites. On eHealthMe, health professionals and patients can study how millions of people use their drugs, and change the way how drugs are prescribed or taken.” via @andrewspong
Patient Communities (Non-Brand Controlled) Epilepsy.com
Epilepsy.com — “Epilepsy Therapy Project seeks to improve incentives and encourage commercial investment in new therapies. Acting as both a catalyst and clearing house for innovative research and the early commercialization of new therapies, the Epilepsy Therapy Project brings together financial resources, scientific insights and business expertise from leading academic and commercial industry participants.”
Patient Communities (Non-Brand Controlled) Face to Face Health
Face to Face Health — “FacetoFace Health is a healthcare social utility designed to connect people directly together with each other via our HealthMatch system.” Interesting angle to connect individuals versus a group discussion.
Patient Communities (Non-Brand Controlled) FindaDoc
FindaDoc — “The FindaDoc solution started as a simple concept: provide a fair and credible resource that is easy-to-use and that provides honest information about America’s doctors, to help support you in your healthcare choices.”
Patient Communities (Non-Brand Controlled) Healia
Healia — “online health community and support groups where you can anonymously share health information, find people with similar health interests, ask questions of peers and health professionals for free, and earn Healia Points for helping others. ”
Patient Communities (Non-Brand Controlled) Healing Well
Healing Well – “HealingWell.com is a thriving social network and support community for patients, caregivers, and families coping with the daily struggles of diseases, disorders and chronic illness. Our goal is simple….to help people on their way to “healing well”.”
Patient Communities (Non-Brand Controlled) HealthBoards
HealthBoards — “provides a unique one-stop support group community offering over 150 message boards on various diseases, conditions, and health topics. The HealthBoards community is one of the largest and most dynamic on the Web, with over 400,000 registered members, and over 3 million messages posted.”
Patient Communities (Non-Brand Controlled) HealtheTreatment
HealtheTreatment "Your story is our story. Contribute your experiences to our library of health information so others can learn from your expertise."
Patient Communities (Non-Brand Controlled)Patient Communities (Non-Brand Controlled) Health Central
Health Central — discussion groups for multiple conditions from acid reflux to skin care.
Patient Communities (Non-Brand Controlled) HealthGrades
HealthGrades – “…providing ratings and profiles of hospitals, nursing homes and physicians to consumers, corporations, health plans and hospitals.”
Patient Communities (Non-Brand Controlled)Patient Communities (Non-Brand Controlled) HealthTuber
HealthTuber — “Online Video Health Network”
Patient Communities (Non-Brand Controlled) icyou Health Videos
icyou Health Videos--"the Web’s only destination focused solely on bringing you the whole world of healthcare video. From important medical breakthroughs to the latest diets, from recipes for people with diabetes to vlogs from cancer patients, icyou is healthcare video."
Patient Communities (Non-Brand Controlled) iGuard.org
iGuard.org — “We are changing the way that doctors, pharmacists, researchers and patients like you communicate about drug safety. We help you stay informed about your medications and help researchers access valuable feedback that can help improve how medications are used.” Includes patient reviews of pharma products
Patient Communities (Non-Brand Controlled) I’m Too Young for This
I’m Too Young for This — “Unlike every other age group, there has been no improvement in the 5-year survival of young adults since 1976. This is not OK. Young adults also face unique issues that are not currently being met by the current continuum of care including fertility, isolation, insurance, dating/sexuality, financial assistance, education, employment and age-appropriate peer support such as social networking, both off and online.” From@thesafa
Patient Communities (Non-Brand Controlled) Inspire
Inspire — “Inspire connects patients, families, friends, caregivers and health professionals for health and wellness support. Inspire works withtrusted health partners to build safe and secure health and wellness groups.” Numerous groups for many different disease states.
Patient Communities (Non-Brand Controlled) Joy of Diabetes
Joy of Diabetes — small group, but leverages Ning to create a community versus developing entirely from scratch. Also tweets@liveoutloudwdiabetes
Patient Communities (Non-Brand Controlled) Juvenation.org
Juvenation.org – Juvenation is a social network created by the Juvenile Diabetes Research Foundation (JDRF) especially for people with type 1 diabetes.
Patient Communities (Non-Brand Controlled) Know Cancer
Know Cancer — “The Know Cancer Community was created to unite the World in the fight against cancer. It is a place where you can connect with others, share your stories, and find support. A place where you can seek inspiration and provide empowerment.”
Patient Communities (Non-Brand Controlled)Patient Communities (Non-Brand Controlled) MedHelp
MedHelp — “MedHelp empowers over 7.5 million people each month to take control over their health and find answers to their medical questions. MedHelp has over 15 years of accumulated information from doctors and other patients across hundreds of conditions.”
Patient Communities (Non-Brand Controlled) MD Circle
MD Circle — “The best way to get credible informative reviews is to ask your family, friends and trusted doctors. This can be an issue if you have a sensitive matter that you don’t want everyone to know yet you still want a trusted referral. MDcircle works the way you do by building a trusted network among your friends and your doctors not some strangers.”
Patient Communities (Non-Brand Controlled) MD Info
MD Info — “MDinfo is a health information resource that empowers visitors to post questions and receive responses from Health Experts in a variety of specialties.”
Patient Communities (Non-Brand Controlled) MD Junction
MD Junction — “MDJunction is an active center for Online Support Groups, a place where thousands of patients meet every day to discuss their feelings, questions and hopes with like minded friends.”
Patient Communities (Non-Brand Controlled) Metabolic Body Odor Community
Metabolic Body Odor Community — community entirely focused on support around metabolic disorders that cause body odor
Patient Communities (Non-Brand Controlled) MyBreastCancerNetwork.com
MyBreastCancerNetwork.com — Breast cancer focused information and support community that is part of the Health
Patient Communities (Non-Brand Controlled) My Cancer Place
My Cancer Place — “My Cancer Place is the only place to join a community of people with cancer, share information, give and receive support, learn from the experiences of others, and create a free web page with text and photos that you can change anytime.”
Patient Communities (Non-Brand Controlled) myHealthCommunities
myHealthCommunities
Patient Communities (Non-Brand Controlled) National Keratoconus Foundation Forum
National Keratoconus Foundation Forum — “Through this forum and an email-based discussion group, KC Link, we provide information and support for people diagnosed with keratoconus,and their families.”
Patient Communities (Non-Brand Controlled) NetDoctor
NetDoctor — “NetDoctor.co.uk is a collaboration between committed doctors, health care professionals, information specialists and patients who believe that medical practice should be based on quality-assessed information and, wherever possible, on the basis of the principles of evidence-based medicine. Over 250 of the UK’s and Europe’s leading doctors and health professionals write, edit and update the contents of NetDoctor.co.uk.” Largest UK patient site.
Patient Communities (Non-Brand Controlled) Obesity Help
Obesity Help — “Welcome to ObesityHelp, the nation’s preeminent Bariatrics support community for patients and professionals.1998, ObesityHelp has been at the forefront of patient support and education, providing our over 600,000 members with the most comprehensive industry information available. ”
Patient Communities (Non-Brand Controlled) Organized Wisdom
Organized Wisdom — “the first human-powered, doctor-guided search service for health.”
Patient Communities (Non-Brand Controlled) Our Beautiful Minds
Our Beautiful Minds — “This website is dedicated to people dealing with schizophrenia, schizoaffective disorder and other related conditions. That includes the people suffering from them and also those who love and/or care for them.”
Patient Communities (Non-Brand Controlled) Patient Power
Patient Power — “Patient Power is devoted to helping you and your family through knowledge, to get the best medicine and return to good health.”
Patient Communities (Non-Brand Controlled) Patients Like Me
Patients Like Me – unbranded, 3rd party company, supports ALS, Parkinson’s, MS, depression, and a few others. One of the largest and most active patient support sites in the world.
Patient Communities (Non-Brand Controlled) Patientsville
Patientsville — “Patientsville.com is Your #1 Information Source of side effect information. Our mission is to provide You with the best knowledge about side effects of prescription and off-the-shelf medications.”
Patient Communities (Non-Brand Controlled) Planet Cancer
Planet Cancer — “A community of young adults with cancer” from @pixelsandpills
Patient Communities (Non-Brand Controlled) PolioToday
PolioToday — “PolioToday.org is published by the Salk Institute for Biological Studies. This website is designed to raise awareness of post-polio syndrome and to be a resource for polio survivors. Dr. Jonas Salk, who developed the first safe and effective polio vaccine, founded the Salk Institute in 1960.”
Patient Communities (Non-Brand Controlled) PrescriptionDrug-Info.com
PrescriptionDrug-Info.com — “This community was started in early 2005 with the goal of providing an unbiased source of personal experiences with prescription drugs. The idea for putting this together was sparked by the fact that there did not seem to be an easy to use site out there for the average person to learn about and share their experiences with various medications. From the very first design to how the site operates today, simplicity and community have been our focus.”
Patient Communities (Non-Brand Controlled) Psych Central
Psych Central — “the Internet’s largest and oldest independent mental health network, providing reliable, trusted information & self-help support communities for over 13 years.”
Patient Communities (Non-Brand Controlled) RareShare
RareShare — Unique social hub building communities for patients, families, and healthcare professionals affected by rare disorders.
Patient Communities (Non-Brand Controlled) RateMDs
RateMDs — “The purpose of the site is to be a resource for people who want to find a good doctor. Where else can you find out what others think of your doctor? When choosing a doctor, wouldn’t you like some information first? It also gives you, the user, a place to voice your opinion. Your opinion will help others find a good doctor.”
Patient Communities (Non-Brand Controlled) Real Mental Health
Real Mental Health — “RealMentalHealth.com is the first social networking site focusing on mental health treatment and wellness. The online community includes individuals, their family members, loved ones and friends who want to easily and interactively obtain knowledge about symptoms and treatments in a supportive community environment.”
Patient Communities (Non-Brand Controlled) Real Women on Health
Real Women on Health — “Welcome to our community where women support each other in being their own best health and wellness advocate!”
Patient Communities (Non-Brand Controlled) RealSelf
RealSelf — “Get the real story about cosmetic treatments from real people and great doctors”
Patient Communities (Non-Brand Controlled) Revolution Health
Revolution Health — “RevolutionHealth.com, a free, comprehensive health and medical information site, specifically designed with the Family’s Chief Medical Officer — women and other caregivers — in mind. RevolutionHealth.com offers best-of-breed health information as well as more than 125 online tools aimed at helping individuals take control of their well-being.” Includes multiple support groups and blogs for various diseases.
Patient Communities (Non-Brand Controlled) Rheumatology Channel
Rheumatology Channel — “Developed and monitored by board-certified physicians, RheumatologyChannel provides comprehensive, trustworthy information about rheumatic and musculoskeletal conditions and diseases, such as arthritis, gout, and lupus.”
Patient Communities (Non-Brand Controlled) rVita
rVita — “rVita’s mission is to help people heal themselves with the help of Integrative, Complementary and Alternative Medicine”
Patient Communities (Non-Brand Controlled) RX Mole
RX Mole — “Rx Mole is an independent community for people to network together to share prices on local prescription drugs. Each member can confidentially submit or look up prices online. Know the price before traveling to a pharmacy.”
Patient Communities (Non-Brand Controlled) Schizophrenia.com
Schizophrenia.com — “A non-profit community providing in-depth information, support and education related to schizophrenia, a disorder of the brain and mind.”
Patient Communities (Non-Brand Controlled) Sleep Disorder Connect
Sleep Disorder Connect – “Whether you have been diagnosed with sleep apnea or insomnia or another sleep disorder, we make it easy to start conversations, share treatments, read and post product recommendations, and much more.” Site is in Beta
Patient Communities (Non-Brand Controlled) SoberCircle
SoberCircle — “is a friendly and feature-rich online recovery community. It is a “home away from home” for people in recovery or those considering recovery, and their family and friends.”
Patient Communities (Non-Brand Controlled) SparkPeople
SparkPeople — “This site really is free– with no strings attached. Over 5 million people have joined SparkPeople to lose weight and make healthy lifestyle changes. Major media outlets like Good Morning America, The Today Show, and People Magazine regularly feature successful SparkPeople members and talk about how this is a completely free site.” “Best Health Website” in 2006, 2007, and 2008 according to Business Week.
Patient Communities (Non-Brand Controlled) StopAfib.org
StopAfib.org — “Our goal is to provide you with information and perspectives about living with atrial fibrillation, and to help you find an atrial fibrillation treatment or cure. We’re about patients helping patients, providing information, education, and resources. We’re here to help you overcome your atrial fibrillation. You are not alone.”
Patient Communities (Non-Brand Controlled)Patient Communities (Non-Brand Controlled) Sugar Stats
Sugar Stats — “SugarStats provides online diabetes management, community support and collaborative sharing to motivate and improve health.” Paid service.
Patient Communities (Non-Brand Controlled) Take this Life
Take this Life –”Welcome to TakeThisLife.com, the Internet’s most unique depression forum. Here you will find people who will listen. More importantly, here you will find people who will care. You can take this life and improve it. We can help.”
Patient Communities (Non-Brand Controlled) Teen Connector
Teen Connector — Private community for teens with cancer, sponsored by Teva. Article about site here. (via @natbourre)
Patient Communities (Non-Brand Controlled) The Body
The Body — “The Complete HIV/AIDS Resource” Also includes a new tracking feature, My Health Tracker, sponsored by Merck. (via @skypen)
Patient Communities (Non-Brand Controlled) This is MS
This is MS — “This is MS is an unbiased, unaffiliated site dedicated to eradicating Multiple Sclerosis. We offer an open-minded approach to *all* potentially viable treatments, ranging from the FDA-approved disease-modifying drugs such as Copaxone to alternative treatments such as Low Dose Naltrexone.”
Patient Communities (Non-Brand Controlled) Trusera
Trusera – “Trusera is an online health network with real-world experiences and insights from people like you.” NOTE: as of May 27,2009, Trusera is no longer available (story here).
Patient Communities (Non-Brand Controlled) Traineo
Traineo — “Traineo helps you lose weight by letting you track your progress through a unique way of getting friendly motivation. The concept is simple: you sign up and choose up to 4 friends or members of your family to receive weekly email updates on how you’re doing.”
Patient Communities (Non-Brand Controlled) TuDiabetes
TuDiabetes — “A social network for support, education, and sharing the steps taken every day to stay healthy while living with this very serious condition.”
Patient Communities (Non-Brand Controlled) Upopolis
Upopolis — “Upopolis is a private social utility that connects young hospital patients to their family, friends and school network .” (via @natbourre)
Patient Communities (Non-Brand Controlled) Vitals
Vitals — “At some point in our lives, we all will need to go to the doctor. Perhaps for a mild problem, or perhaps for a serious one. Vitals was created to give consumers the tools — for the first time — to make informed decisions about which doctor to choose. Our web site offers you a variety of ways to find a doctor that’s right for you.”
Patient Communities (Non-Brand Controlled) WebMD Health Exchange
WebMD Health Exchange — “Introducing a place where you can get help and give help within WebMD, the most trusted leader in online health information.”
Patient Communities (Non-Brand Controlled) WEGOHealth
WEGOHealth — “WEGO Health is the home of Health Activists – vigorous advocates, avid connectors, daily contributors and social media opinion leaders who bring the expertise of having been there, survived that. ”
Patient Communities (Non-Brand Controlled) Wellsphere
Wellsphere — “Wellsphere’s mission is to help millions of people live healthier, happier lives by connecting them with the knowledge, people and tools they need to manage and improve their health. Recognizing that each person has their own unique health questions, we developed a model that combines personalized information and social support to help people address their individual concerns.”
Patient Communities (Non-Brand Controlled) What Now
What Now — “Join a community of 1000s of people affected by cancer and chat, blog, post to the forums, join support groups, share photos and videos and much more.”
Patient Communities (Non-Brand Controlled) Wiser Together/Wiser Pregnancy
Wiser Together/Wiser Pregnancy — “WiserTogether was born out of the simple idea that technology can help people facing challenging situations to make informed decisions that give them peace of mind. Making decisions without adequate information is stressful – especially when the health of you or your baby is at stake.” Community data and decision resource using “crowdsourced” past decisions and outcomes. (via Joel Selzer)
Patient Communities (Non-Brand Controlled) TMJ Hope
TMJ Hope: "TMJ Hope is a website & community designed to help fellow temporomandibular joint disorder sufferers through their journey. We have every intention of providing the latest research & educational materials to our users, but this site is written & participated in by lay people."
Patient Communities (Non-Brand Controlled) Vivu
Vivu: social network to connect potential patients and doctors
Patient Communities (Non-Brand Controlled) Be Valley
Be Valley: "Bevalley, a health network where medical facts are shared and analyzed"
Patient Communities (Non-Brand Controlled) HCV Share
HCV Share: Hepatitis C Support Network
Patient Communities (Non-Brand Controlled) Navigating Cancer
Navigating Cancer: "We understand how overwhelming a cancer diagnosis can be. Navigating Cancer will help you take control of your journey by bringing together powerful tools, relevant cancer resources, and a supportive community — all free and easy to use."
Patient Communities (Non-Brand Controlled) Health Unlocked
Health Unlocked: "HealthUnlocked is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust. As a member you can use HealthUnlocked to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more."
Patient Communities (Non-Brand Controlled) Remedeo
Remedeo: (French) "Our mission is to provide online information customized, objective and relevant , to assist the population in the daily management of their health in partnership with health professionals."
Patient Communities (Non-Brand Controlled) Chronic Babe
Chronic Babe -- "An online resource for young women with chronic illness."
NEW Patient Communities (Non-Brand Controlled) User Meds
User generated drug reviews including images.
NEW Patient Communities (Non-Brand Controlled) Cushing's Help
Support program for people with Cushing's Syndrome.
NEW Patient Communities (Non-Brand Controlled) Kids With Food Allergies
"Our Parents of Food Allergic Kids (POFAK™) Community is the largest online support community for families raising children with food allergies. "
NEW Patient Communities (Non-Brand Controlled) HealthShare Groups
"Healthshare groups is a social health network. Our community helps members take control of their health through information and support. Members use healthshare groups to make valuable friendships, share health information, and coordinate support and care for other."
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Healthcare Professional Communities
Communities exclusive to healthcare professionals
Search:
Program Type Name Description
Healthcare Professionals Communities American Academy of Ophthalmology
American Academy of Ophthalmologyy--"With photo-sharing, groups, blogs and more, the AAO.org community might just be the next best thing to the Annual Meeting. Join the conversation to make it even better!" via @paulwynn
Healthcare Professionals Communities Asklepios
Asklepios — HCPs’ social network operated by the Canadian Medical Association
Healthcare Professionals Communities CardioSource
CardioSource--Physician communities from the American College of Cardiology. (via @paulwynn)
Healthcare Professionals Communities Cardiothoracic Surgery Network
Cardiothoracic Surgery Network--"CTSNet is the most comprehensive, most heavily trafficked, and most reliable online source of information about cardiothoracic surgery available worldwide, and its online community of cardiothoracic surgeons is the largest in the world." via @paulwynn
Healthcare Professionals Communities Coliquio
Coliquio — HCPs’ social network serving the German speaking countries. Plans to expand and launch in Italy, France and Spain
Healthcare Professionals Communities DermRounds
DermRounds — “created by dermatologists, this is a social and professional networking site dedicated to connecting dermatologists, residents, fellows, other physicians, health professionals, industry leaders, and anyone who is in the field of dermatology!”
Healthcare Professionals Communities DocGreet
DocGreet- "DocGreet.com offers a complete solution for doctor to doctor communication, and marketing solutions to retain your current patients and reach future ones." (via @SpitzStrategy)
Healthcare Professionals Communities DocCheck Faces
DocCheck Faces — A HCPs’ social network for physicians, dentists, pharmacists, and veterinary surgeons. Linkedin structure with communities for Germam, French, Italian and Spanish HCPs.
Healthcare Professionals Communities doc2doc
doc2doc — Created by the publishers of The British Medical Journal “doc2doc is a free and easy to use online doctors community. doc2doc has a range of tools to help you network with other doctors on a professional and social level.”
Healthcare Professionals Communities Doctors.net.uk
Doctors.net.uk – “Doctors.net.uk is available to UK-registered doctors in primary and secondary care. It offers a professional, secure e-mail facility, clinical and non-clinical fora, the very latest medical information and free accredited education allowing doctors to maintain Continuing Professional Development (CPD).” Thanks to@sammielw
Healthcare Professionals Communities Dooox
Dooox – A community on medical and healthcare communities serving the German speaking counties in Europe: Germany, Austria and Switzerland
Healthcare Professionals Communities Doctor Networking
Doctor Networking — As a member of DoctorNetworking, you can connect and interact with an expanded network of physicians whose collective knowledge you can contribute to and benefit from. Your professional relationships are key to your professional success. Your network consists of your connections, your connections’ connections, linking you to thousands of qualified professionals.”
Healthcare Professionals Communities Doctors Hangout
Doctors Hangout — “DoctorsHangout.com is an exclusive next generation social networking service for Medical Students, Residents and Doctors. DoctorsHangout social network can help you maintain existing personal and professional relationships and establish new ones by reaching out to Doctors you’ve never met before.”
Healthcare Professionals Communities Doctrs
Doctrs — “Doctrs is an exclusive social net for Physicians.Doctrs has been founded by Michael Kamleitner and Lukas Zinnagl in 2008. The intention was to create a private network, which serves the needs physicians around the world face when being in a social net.”
Healthcare Professionals Communities EyeSpace MD
EyeSpace MD--"EyeSpaceMD is a multi-dimensional, web-based ophthalmic education portal developed by the American Society of Cataract and Refractive Surgery. EyeSpaceMD offers educational content derived from ophthalmic meetings along with ancillary information and opinion in the form of on-line discussion groups, archives, videos, images, articles, news reporting, podcasting, and industry-supported information." (via @paulwynn)
Healthcare Professionals Communities IMedExchange
IMedExchange — “iMedExchange connects physicians with information, opportunities, and each other. With a rapidly growing membership of physicians nationwide and more than 300 physician advisors, medical directors, and investors, iMedExchange is driven at all levels to support and promote the interests of physicians.”
Healthcare Professionals Communities IVrach
IVrach--Social network for Russian speaking physicians
Healthcare Professionals Communities Johnson & Johnson Diabetes Institute
Johnson & Johnson Diabetes Institute- "At the Johnson & Johnson Diabetes Institute, our vision is to transform diabetes care. We see a world without limits for people with diabetes. We seek to make this world a reality by empowering healthcare professionals in countries worldwide to improve the quality of life for people with diabetes."
Healthcare Professionals Communities medpharmaconnect
medpharmaconnect- "MedPharmaConnect is a social networking site which has been designed to encourage "good relationship practice" between pharmaceutical and medical professionals. The site enables users to connect, contribute and collaborate with others through articles, forums, news updates, Physician interviews and much more."
Healthcare Professionals Communities MedicSpeak
MedicSpeak — “MedicSpeak is a premier international network of doctors and medical students. The objective is to enhance communication, collaborations, exchange of ideas and sharing of knowledge.”
Healthcare Professionals Communities Medscape Physician Connect
Medscape Physician Connect –”We’ve provided the tools for you to engage your peers through our FREE global physician community – Physician Connect. Expand your social network and access the knowledge base of tens of thousands of doctors on any topic.” Physicians-only network
Healthcare Professionals Communities Medting
Medting — “MEDTING is an interactive platform on web for the medical professionals over the world to share their knowledge. MEDTING is a best tool for a physician for sharing medical images, videos and discuss them with a large community of physicians. All for free, always.”
Healthcare Professionals Communities MedTrust
MedTrust — “MedTrust Online connects oncologists with the latest clinical discoveries to improve patient care.”
Healthcare Professionals Communities New Media Medicine
New Media Medicine — Based in New Zealand, a doctors’, medical students’, and pre-medical students’ social network. 60,000 members as of July 2009
Healthcare Professionals Communities NurseConnect
NurseConnect — “NurseConnect is an online nursing community and networking site for nurses and other healthcare professionals interested in advancing their education, careers and personal lives by sharing experiences and knowledge with others. NurseConnect is owned and operated by AMN Healthcare, Inc.”
Healthcare Professionals Communities OBGYN.net
OBGYN.net — “OBGYN.net has been online since 1995. It represents a vast and ever growing research and support community with over1000,000 pages of educational material and social networking.”
Healthcare Professionals Communities OrthoMind
OrthoMind –Social network for orthopaedic surgeons
Healthcare Professionals Communities Ozmosis
Ozmosis – “The Trusted Physician’s Network” is the professional application of a social network that enables verified, U.S. licensed physicians to exchange medical knowledge. By leveraging the power of the trusted network, Ozmosis delivers personalized and relevant medical information to each member, ultimately saving time and improving patient care.
Healthcare Professionals Communities PharmQD
PharmQD — “The mission of PharmQD is to create an online pharmacy community where members can network socially and professionally to achieve their individual goals and promote advances in pharmacy practice.” (via @kevinclauson)
Healthcare Professionals Communities Present Diabetes
Present Diabetes — “The multi-disciplinary diabetes team use PRESENT Diabetes to improve their skills in the treatment of their diabetic patients, learn from and interact with key opinion leaders and stay on the cutting edge of the dynamic field of diabetes and the diabetic foot. All the benefits of a Live Conference available free online.”
Healthcare Professionals Communities Present Podiatry
Present Podiatry — “PRESENT Podiatric Residency Education Online, currently in it’s 7th year, has become the standard lecture curriculum at podiatric residency programs across the country. PRESENT Podiatry provides Facebook style social networking services to the podiatry community.”
Healthcare Professionals Communities Relaxdoc
Relaxdoc – “Welcome to RelaxDoc.com, the exclusive FREE online resource for physicians – a private community created by physicians, providing concise information and valuable services to help you balance your personal and professional life. Relaxdoc.com is your single source for news and information, peer networking, travel, sports, and more.”
Healthcare Professionals Communities RxSpace
RxSpace — “RxSpace is a unique Professional Social Networking website dedicated to individuals in the pharmacy industry. RxSpace provides a sounding board for pharmacy students, pharmacists, pharmacy owners and academia to discuss, debate and initiate conversations on topics and issues relevant to their fields.” (via @kevinclauson)
Healthcare Professionals Communities Sermo
Sermo –”Sermo, the fastest – growing community created by physicians, for physicians. Here, physicians aggregate observations from their daily practice and then – rapidly and in large numbers – challenge or corroborate each others opinions, accelerating the emergence of trends and new insights on medications, devices and treatments. You can then apply the collective knowledge to achieve better outcomes for your patients.”
Healthcare Professionals Communities SocialMD
SocialMD — “SocialMD is a great new way to network with other physicians. Whether you are a medical student, resident, fellow or physician you will find that SocialMD is a great way to meet and network with other medical professionals. There are currently more than 3100 members in SocialMD.”
Healthcare Professionals Communities Spine Connect
Spine Connect – “Syndicom SpineConnect is the leading collaborative knowledge network for spine surgeons to collaborate on difficult and unusual cases.”
Healthcare Professionals Communities Symposier
Symposier--"Symposier is a utility aimed at the worldwide physicians community where we integrate content from the core medical sources, presented in a wide range of formats such as video, images, text, links and documents. These contents are later categorized through a standardized approach designed to enhance the functionality and the learning experience for the physicians, allowing them to easily browse and research medical content" (via@gzones1974)
Healthcare Professionals Communities TimedRight
TimedRight — provides healthcare professionals a tool to find, connect and engage with other healthcare professionals, helping them extend their network, deepen existing relationships, and freely share and exchange knowledge. As of this posting, May 11 2009, TimedRight is in beta.
Healthcare Professionals Communities Tiromed
Tiromed — Physician and medical student social network
Healthcare Professionals Communities VuMedi
VuMedi – “VuMedi is a surgeon-only video sharing website where you can view, upload, and discuss surgical videos.” (via@nicoleljohnson)
Healthcare Professionals Communities Within3
Within3 — “Within3 is the online professional networking site exclusively for health and life science practitioners worldwide to find, connect and collaborate with the right colleague right now. Within3 is free to individual professionals, earning its revenue by selling software licenses to health and life science organizations who wish to establish online communities inside the platform.”
Healthcare Professionals Communities YP Connection
YP Connection--Young physicians network from the American Academy of Pediatrics. (via @paulwynn)
Healthcare Professionals Communities meshMD
meshMD: "meshMD is the premier online platform for medical collaboration. It is the web’s most powerful tool for doctors to ask questions of their peers, post important and relevant medical data for review and collaboration, and build valuable professional relationships. The free management tools provided at meshMD facilitate the collaboration process."
Healthcare Professionals Communities Gas Exchange
Gas Exchange: community focused on anesthesia related topics
Healthcare Professionals Communities DXY
DXY-Chinese HCP community (via @lenstarnes)
Healthcare Professionals Communities M3
M3- Chinese HCP Community (via @lenstarnes)
Healthcare Professionals Communities Doximity
Doximity: "A timely lab result, the right referral, a quick phone consult — we have all seen that better communication can result in meaningfully better patient outcomes. In an age of competing health systems and disconnected "data silos," we hope that Doximity can help connect the people that matter most — the professionals at the point-of-care." (via 33 Charts)
Healthcare Professionals Communities Doctors Talk
Doctors Talk: "the place for the medical community to meet, find &
share medical information, jobs & events" (via @jaeselle)
Healthcare Professionals Communities ACS United
ACS United -- "A social and professional network for all healthcare professionals involved in the management and care of patients with acute coronary syndromes (ACS)" Created and owned by AstraZeneca UK
NEW Healthcare Professionals Communities Human Health Project
"The Human Health Project began in California in 2006 as a non-profit organization when its founder, Dr. Phil Harrington, M.D., decided to create a platform for medical professionals to discuss rare and unusual health problems."
NEW Healthcare Professionals Communities Innovations MD
"A streamlined operation that aggregates, evaluates, develops, packages and drives the best ideas to market. InnovationsMD is that platform."
NEW Healthcare Professionals Communities ACS United
Sponsored by AZ. Registration required.
NEW Healthcare Professionals Communities "Fertility Space" from Merck Spain
Spanish language (via @ideagoras)
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Facebook
All pharma and healthcare Facebook pages and apps whether corporate-sponsored or not
Search:
Program Type Name Description
UPDATED Facebook Acuminder REMOVED--Acuminder is the perfect reminder tool to help you keep track of all the little details that life throws your way. With Acuminder you can create any type of reminder for yourself or to send to your friends. ”
Facebook Acuvue
Acuvue — featuring open comments on the Wall (via @RosettaHC)
UPDATED Facebook Acuvue Wink REMOVED--With the Wink application by 1•DAY ACUVUE MOIST®, you can send a real wink to anyone you like. It lets you be as flirty, shocked or as mischievous as you like!
UPDATED Facebook Addressing Psoriasis REMOVED--Addressing Psoriasis was developed to inspire people with plaque psoriasis to actively manage their condition, be more confident and not allow the condition to inhibit their everyday style. Visit addresspsoriasis.com. Co-sponsored by Amgen and Pfizer, via@wmartino
Facebook ADHD Allies
ADHD Allies — “a new online community for and about adults with Attention Deficit Hyperactivity Disorder (ADHD). ” McNeil’s follow up to ADHD Moms (see below), this one focuses on adults with ADHD. Thanks to @skypen.
Facebook ADHD Moms
ADHD Moms–A Place for Moms with Children of ADHD; sponsored by McNeil Pediatrics http://www.mcneilpediatrics.net Launched 2008
Facebook AstraZeneca Careers
AstraZeneca Careers — Recruitment site on Facebook
UPDATED Facebook Bayer: 50 Years of the Pill REMOVED -- (originally via @eileenobrien)
Facebook AstraZeneca Community Connections
AstraZeneca Community Connections — “We’ve created a range of important programs to promote healthy communities, including partnering with patient-focused organizations dedicated to disease awareness and prevention, research and education, access to healthcare, and more. Some of these groups include community healthcare service providers, civic groups, nonprofit research organizations, and public policy organizations.” (via @emilydownward)
Facebook Boehringer Ingelheim Corporate
Boehringer Ingelheim Corporate
UPDATED Facebook Breakaway from Cancer REMOVED--from Amgen
UPDATED Facebook CCFA and Shire Virtual Walk REMOVED--CCFA now has their own page at CCFA on Facebook
Facebook Claritin
Claritin- open Wall discussions
Facebook CHOICE Campaign Facebook "Causes" App
CHOICE Campaign Facebook "Causes" App- for LAP-BAND
Facebook Changing Possibilities in Hemophilia
Changing Possibilities in Hemophilia — “Changing Possibilities in Hemophilia® is a community to connect you to individuals and families living with hemophilia with inhibitors. Sponsored by Novo Nordisk Inc., we invite you to become a fan today!” Created by NovoNordisk. (via @cherylannborne)
Facebook Claritin Eye
Claritin Eye — (hat tip to @emilydownward)
Facebook Cleveland Clinic
Cleveland Clinic
Facebook The Coalition to Prevent Deep Vein Thrombosis (DVT)
The Coalition to Prevent Deep Vein Thrombosis (DVT) — Sponsored by sanofi-aventis (via @melissakdavies)
UPDATED Facebook Cold-FX REMOVED--2010 Winter Olympics focused brand page for Canada-focused, cold and flu product (via @natbourre)
Facebook Cooper Vision
Cooper Vision--featuring open Wall comments (via @RosettaHC)
Facebook Crest Whitestrips
Crest Whitestrips — “The leader in whitening brings you a page all about showing off your best smiles.”
Facebook CyberKnife
CyberKnife
Facebook Donate Life America
Donate Life America — “Welcome to the official Donate Life America® Facebook page where you can learn how to change someone’s world by registering to be an organ donor.” This page is sponsored by Astellas Pharma, makers of Prograf, an immunosuppression regimen for liver, kidney and heart transplant patients
UPDATED Facebook "Don't Blow It" game REMOVED--Application/game created for Nasonex
UPDATED Facebook Epilepsy Advocate REMOVED-- part of a larger program from UCB Pharma (via@adweekdotcom)
UPDATED Facebook Gardasil Facebook Page REMOVED: More than 130k members, verified as the first pharma Facebook page.
Facebook In The Face of Pain
In The Face of Pain--from Purdue Pharma (via @skypen)
Facebook It Girl Essentials REMOVED: Facebook page for Ortho Tri-Cyclen Lo
Facebook Johnson & Johnson
Johnson & Johnson — Corp. information page including links to many J&J social media efforts
Facebook J&J Nursing Notes
J&J Nursing Notes (via @eyeonfda)
Facebook Juvederm
Juvederm
Facebook Labs are Vital
Labs are Vital — Abbott Laboratories: “Labs Are Vital exists to support laboratory professionals everywhere by celebrating their contributions and extending the lab’s influence within the health care community.”
Facebook LAP-BAND
LAP-BAND
Facebook Latisse
Latisse — 8,000 fans
Facebook Lunesta
Note: page removed (3/11/11) Lunesta (via @skypen)
UPDATED Facebook Maria Strassman Novartis Oncology Zometa REMOVED: Marcia Strassman Novartis Oncology supporting Zometa
Facebook Mayo Clinic Fan Page
Mayo Clinic Fan Page
UPDATED Facebook MS Voices
New URL-Welcome to the MS Voices online community. Whether you are living with multiple sclerosis (MS), a care partner, family member, friend to someone with MS, or a supporter in the fight against MS, you’ve come to the right place. MS Voices was created for anyone touched by MS to help support each other, learn tips and hear from others." from Pfizer and EMD Serono (via @melissajlang)
UPDATED Facebook MS Champions REMOVEDUnite to Fight MS, brought to you by the sponsors of MS LifeLines®, connects you with National MS Society Walk MS walkers, Bike MS cyclists and others who are coming together in the fight against MS. Featuring an interactive events map, MS ChampionsUnite to Fight MS allows you to search for National MS Society Walk MS and Bike MS events, share photos and connect with others who have downloaded the application.” Created by EMD Serono, Inc. and Pfizer Inc, co-marketers of Rebif (from @skypen)
Facebook MS Village Canada
MS Village Canada
UPDATED Facebook My CML Circle REMOVED: from Novartis (via @arlyi)
Facebook Neurostar TMS
Neurostar TMS — via @arlyi
Facebook Nexium REMOVED
Facebook Night Nurse Nation
Night Nurse Nation -- from Abbott Nutrition
UPDATED Facebook Novartis Clinical Trials REMOVED: Listing of all active Novartis clinical trials created to recruit patients
Facebook Lilly Oncology on Canvas
Lilly Oncology on Canvas — “Oncology On Canvas: Expression of a Cancer Journey is an art competition and exhibition that honors the journeys people face when confronted with cancer. This biennial competition, presented by Lilly USA, LLC (Lilly), in partnership with the National Coalition for Cancer Survivorship (NCCS), invites people from the United States and Puerto Rico touched by cancer – patients, their families, friends, caregivers and healthcare providers – to express, through art and narrative, the life-affirming changes that give their cancer journeys meaning.” Thanks to @dcowlin and others.
Facebook Nicorette
Nicorette — (via @shikhvarger)
Facebook NatureMaid VitaminID
NatureMaid VitaminID — “vitaminID.com offers a daily vitamin plan tailored just for you in a convenient monthly kit. Complete our confidential Personal Health Survey, created by a nutritionist, based on your health, diet, age and more. Start today, and become a more perfect you!”
Facebook NyQuil
NyQuil – includes “NyQuil Nation” Contest
Facebook Pfizer
Pfizer — Official company Facebook Page (via @mhuckman)
Facebook Pfizer Turkey
Pfizer Turkey Corporate Page (in Turkish)
Facebook Prevacid24HR REMOVED
Facebook Prilosec OTC
Prilosec OTC
UPDATED Facebook Reclast "On the Go Women" REMOVED: one of the few prescription drug pages on Facebook (from Novartis, hat tip to @emilydownward
Facebook Sounds of Pertussis
Sounds of Pertussis--Awarenes campaign from Sanofi Pasteur featuring Jeff Gordon
UPDATED Facebook Team Hank from Genzyme REMOVED: Knee osteoarthritis can happen to anyone, including baseball legend Hank Aaron. Until now, Hank’s battle with osteoarthritis (OA) of the knee has been kept on the sidelines. Yet, in hopes of helping the 10 million Americans with the condition, Hank has teamed with Genzyme, the maker of Synvisc-One® (hylan G-F 20) and orthopedic surgeon and author Dr. Nick DiNubile to launch “Get Back in the Game.” The program encourages the millions of people suffering with OA knee pain to take action now and to talk to their doctor about treatment options. (via @mikepresson)
Facebook sanofi-aventis VOICES
sanofi-aventis VOICES — “Our VOICES is the sanofi-aventis U.S. Grassroots and Civic Involvement Network.”
UPDATED Facebook Strong@Heart REMOVED
Facebook Zicam
Zicam — a rare example of a completely open, unmoderated Wall with quick responses from the brand.
Facebook Our Hemophilia Community
Our Hemophilia Community: from Pfizer
Facebook Take on Depression
Take on Depression: from AstraZeneca
Facebook I Am Pro Heart
I Am Pro Heart: from Bayer
Facebook Accu Chek Canada
Accu Chek Canada: from Roche
Facebook Lilly Careers
Lilly Careers: via @eyeonfda
UPDATED Facebook Lysteda REMOVED: brand page from Ferring Pharmaceuticals (via iMedia Solutions)
Facebook On Control Bone Marrow System
On Control Bone Marrow System: HCP-focused brand Facebook page
UPDATED Facebook Covidien TussiCaps "Cap the Cough" REMOVED
UPDATED Facebook Voices in PAH
REMOVED: (via @tlgrahamtlgraham)
Facebook The Diabetes Dish
The Diabetes Dish: from Merck
Facebook Botox Cosmetic
Botox Cosmetic: from Allergan
Facebook Sanofi-Aventis US Diabetes
Sanofi-Aventis US Diabetes
Facebook CVS
CVS
Facebook Allegra OTC
Allegra OTC (via @jaysbryant)
Facebook GlaxoSmithKline (GSK) Corporate
GlaxoSmithKline (GSK) Corporate
Facebook MaxClarity
MaxClarity
UPDATED Facebook sanofi-aventis US (corporate)
sanofi-aventis US (corporate)
Facebook My Alli
My Alli -- Facebook page for OTC weight loss product Alli from GSK
NEW Facebook TogetherRx Access
TogetherRx Access -- via @sambrowninc
NEW Facebook Zimmer
Corporate Page
NEW Facebook New Way RA
REMOVED
NEW Facebook Fit in Your Skin
REMOVED
NEW Facebook Novartis Corporate
(via @pharmaphorum)
NEW Facebook Salix Pharma
Corporate Page
NEW Facebook Teva Pharmaceutical
Corporate Page
NEW Facebook Psoriasis 360
From Janssen, focused on European audience
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YouTube
Pharma and Healthcare company YouTube pages or videos including corporate and brand specific efforts
Search:
Program Type Name Description
YouTube Abbott
Abbott
YouTube AstraZeneca
AstraZeneca — via @eileenobrien
YouTube Bayer Corporate (German)
Bayer Corporate (German)
YouTube BayerTVInternational
BayerTVInternational — via @dominic_tyer
YouTube Boehringer Ingelheim
Boehringer Ingelheim — via EyeonFDA
YouTube BrainLine
BrainLine — BrainLine.org is a non-profit resource on preventing, treating, and living with traumatic brain injury.
YouTube Cleveland Clinic
Cleveland Clinic
YouTube Concerta
Concerta — ADHD Channel branded with Concerta from McNeil Pediatrics (via Kru Research)
YouTube Humana Crumple It Up
Humana Crumple It Up--from the Innovation Center at Humana
YouTube CyberKnife
CyberKnife
YouTube Excedrin Express Gels
Excedrin Express Gels — user generated video contest.
YouTube Genentech
Genentech — focuses on employee videos regarding why they work for the company (note: allows ratings and comments) FromEyeonFDA
YouTube GoInsulin REMOVED--from Sanofi Aventis
YouTube GSK
GSK — via EyeonFDA
YouTube Help Prevent
Help Prevent — GSK channel featuring commercials for cervical cancer awareness
YouTube InBedStory
InBedStory — “My life started getting a little, shall we say, tricky a while ago. Activities in the bedroom became, you know, increasingly limited. No naughty business as it were. Not that I didn’t want it, I just couldn’t. It got me down, but now I’m back to my fine, upstanding self and you can see how in these videos. This is my story. Maybe it will even strike a chord with you. Produced by Bayer Schering Pharma, helping men get their mojo back. Find out more about erectile dysfunction at www.In-Bed.info.” (via @pharmafocus and@lenstarnes) Also InBeddr channel featuring Q&A with doctor (viaSam Walmsley)
YouTube Johnson & Johnson Health Channel
Johnson & Johnson Health Channel — “Videos to promote a better understanding of health, from the Johnson & Johnson Family of Companies.” — via EyeonFDA
YouTube LAP-BAND
LAP-BAND (via @arlyi)
YouTube Living With ADHD
Living With ADHD- from Janssen-Cilag (via @kingsgrove)
YouTube Lilly Oncology on Canvas
Lilly Oncology on Canvas — via @dcowlin
YouTube Living with ADHD
Living with ADHD--from Janssen-Cilag
YouTube Lunesta
Lunesta
YouTube Mayo Clinic
Mayo Clinic
YouTube MS Village Canada
MS Village Canada
YouTube My Asthma Story REMOVED--from AZ
YouTube My Treatment Decision
My Treatment Decision – Genomic Health
YouTube Novartis
Novartis — via EyeonFDA
YouTube Novartis Clinical Trials
Novartis Clinical Trials
YouTube Novartis Flu Flix
Novartis Flu Flix — Competition from 2007, 800k views for intro video alone
YouTube Nutropin
Nutropin — Genentech-sponsored “GrowthHormoneTherpy” channel (via @edwardaten)
YouTube Parkinson's Matters
Parkinson’s Matters — from Boehringer Ingelheim
YouTube Pfizer News
Pfizer News- News updates from Pfizer US
YouTube Pfizer Europe
Pfizer Europe – via @sammielw
YouTube Pfizer UK
Pfizer UK — featuring the advert created by “Pfizer in response to research which found that more than one in seven British adults (15%) has admitted to bypassing the healthcare system to get hold of prescription only medicine without a prescription”
YouTube Realize Gastric Band
Realize Gastric Band — Channel for Realize Band, Ethicon Endo-Surgery (a J&J company)
YouTube SanofiPasteur
SanofiPasteur
YouTube ScrippsHealth
ScrippsHealth
YouTube Humana Stay Smart, Stay Healthy YouTube Channel
Humana Stay Smart, Stay Healthy YouTube Channel--"Stay Smart Stay Healthy is a Humana new-media venture designed to deliver guidance, and to support awareness and understanding of the healthcare industry. Our goal is simple: to educate consumers on the healthcare system by removing the usual complexities and replacing them with an informative and engaging series of videos."
YouTube Stroke Prevention Channel
Stroke Prevention Channel — created by Boehringer Ingelheim
YouTube TevaNeuroHealth
TevaNeuroHealth
YouTube Tibotec HIV
Note: page no longer exists Tibotec HIV — via @eileenobrien and@eyeonFDA
YouTube UC Success
UC Success — unbranded YouTube page for Asacol’s support program
YouTube Wyeth Hemophilia
Wyeth Hemophilia (via @eileenobrien)
YouTube Get a Real Plan
Get a Real Plan: Plan B One-Step's Get a Real Plan YouTube Channel
YouTube GE Healthcare
GE Healthcare
YouTube Prenate Perl
Prenate Perl: Prenate prenatal vitamins (via @nucleusmedmedia)
YouTube Astellus US
Astellus US: corporate level page (via @eyeonfda)
YouTube FibroCenter
FibroCenter -- Fibromyalgia information from Pfizer (via@EileenOBrien)
YouTube sanofi-aventis TV (English)
Moved from Misc category to YouTube. sanofi-aventis TV (English) -- Video news website created by Sanofi-Aventis featuring a pretty deep library of topics from corporate PR pieces to disease-specific information.
YouTube WhyInsulin
WhyInsulin -- "The stories you see here reflect the personal journeys of people like you who have diabetes and are making an effort to manage their blood sugar." Branded page for Lantus. Follow up to "GoInsulin," which had been removed in 2010.
NEW YouTube Sculptra Aesthetic Channel
From Sanofi-Aventis US
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Twitter (Pharma & Healthcare Companies)
Pharma and healthcare companies using Twitter at a corporate level, brand level and company employees
Corporate Level
Search:
Program Type Name
Twitter (Corporate-Level) ADHDSupport — From Shire for unbranded ADHD program (via @pharmaguy)
Twitter (Corporate-Level) AF Stat — Sponsored by Sanofi-Aventis
Twitter (Corporate-Level) Allergan – added by whydotpharma
Twitter (Corporate-Level) Amgen (via @pierreyves)
Twitter (Corporate-Level) Astellas (US)
Twitter (Corporate-Level) AstraZeneca — previously held by a “squatter,” this is now controlled by AZ global (confirmed by AZ on 8/25)
Twitter (Corporate-Level) AstraZenecaUS
Twitter (Corporate-Level) AZHelps — AZ account that finds people tweeting about Nexium and then responds with a standard message offering assistance.
Twitter (Corporate-Level) AstraZeneca Jobs — via @eileenobrien
Twitter (Corporate-Level) Baxter International (via @Roche_com)
Twitter (Corporate-Level) Baxter Renal Info (via Eileen O'Brien)
Twitter (Corporate-Level) Baxter US
Twitter (Corporate-Level) Bayer Healthcare (via @lenstarnes)
Twitter (Corporate-Level) Bayer Men’s Healthcare (thanks @lenstarnes)
Twitter (Corporate-Level) Bayer World Environment Day (WED)
Twitter (Corporate-Level) Bayer US News
Twitter (Corporate-Level) Bayer UK Ireland — (via @andrewspong)
Twitter (Corporate-Level) BMSNews (via @andrewspong)
Twitter (Corporate-Level) Boehringer
Twitter (Corporate-Level) BoehringerUS
Twitter (Corporate-Level) Cigna — US-based health insurance company
Twitter (Corporate-Level) Dialogo Roche (via @Roche_com)
Twitter (Corporate-Level) Elan
Twitter (Corporate-Level) GE Healthcare
Twitter (Corporate-Level) GraftFinder
Twitter (Corporate-Level) Genentech
Twitter (Corporate-Level) Genzyme
Twitter (Corporate-Level) GSK
Twitter (Corporate-Level) J&J
Twitter (Corporate-Level) J&J History
Twitter (Corporate-Level) J&J Stories
Twitter (Corporate-Level) J&J Video
Twitter (Corporate-Level) Janssen Cilag (via @andrewspong)
Twitter (Corporate-Level) LifeSensor
Twitter (Corporate-Level) Lilly Oncology on Canvas — officially sponsored by Lilly Oncology
Twitter (Corporate-Level) Lundbeck — via @eileenobrien
Twitter (Corporate-Level) Mayo Clinic
Twitter (Corporate-Level) McKesson Health IT
Twitter (Corporate-Level) McNeil Recall – via @pharmaguy
Twitter (Corporate-Level) Medco Health Solutions
Twitter (Corporate-Level) MedImmune
Twitter (Corporate-Level) Medscape Oncology
Twitter (Corporate-Level) @medtronicanz--Medtronic Australia
Twitter (Corporate-Level) NeuroStar TMS — via @arlyi
Twitter (Corporate-Level) Novartis
Twitter (Corporate-Level) Novartis Pharma Switzerland
Twitter (Corporate-Level) NovartisTrials (via @skypen)
Twitter (Corporate-Level) Novo Nordisk Race With Insulin
Twitter (Corporate-Level) Novo Nordisk Government Affairs
Twitter (Corporate-Level) Pfizer_news — Officially confirmed with Pfizer on July 23
Twitter (Corporate-Level) Pfizer Turkey--in Turkish
Twitter (Corporate-Level) PKUAwareness — from Biomarin (via @EileenOBrien)
Twitter (Corporate-Level) Roche
Twitter (Corporate-Level) Sanofi-Aventis TV — provides updates on S-A’s new video channel
Twitter (Corporate-Level) sanofi-aventis Germany
Twitter (Corporate-Level) SanofiVOICES
Twitter (Corporate-Level) SanofiPasteur
Twitter (Corporate-Level) ThromboAdviser — Non-branded thrombosis channel supported by Bayer Schering Pharma. (via Len Starnes)
Twitter (Corporate-Level) Vertex — (via @skypen)
Twitter (Corporate-Level) Sanofi-Aventis US (via @EileenOBrien)
Twitter (Corporate-Level) Sanofi-Aventis US Diabetes
Twitter (Corporate-Level) Pfizer Austria
Twitter (Corporate-Level) GSK (Global)
Twitter (Corporate-Level) CVS Caremark
Twitter (Corporate-Level) Pfizer Mexico (via @andrewspong)
Twitter (Corporate-Level) Pfizer Turkey (via @andrewspong)
Twitter (Corporate-Level) sanofi-aventis US VOICES
Twitter (Corporate-Level) Stiefel, a GSK company
Twitter (Corporate-Level) DynPort
Twitter (Corporate-Level) GSK Japan HR
NEW Twitter (Corporate-Level) @adhdandyou_uk--from Shire
NEW Twitter (Corporate-Level) @trxa--TogetherRX Access (via @sambrowninc)
NEW Twitter (Corporate-Level) @Zimmer
NEW Twitter (Corporate-Level) @BexionPharma (via @andrewspong)
NEW Twitter (Corporate-Level) @Millennium_US (via Klick Pharma)
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Brand Level
Search:
Program Type Name
Twitter (Brand-Level) Breakaway Cancer from Amgen
Twitter (Brand-Level) CHOICE Campaign- program for LAP-BAND (via InTouch Solutions ePharmaRx Blog)
Twitter (Brand-Level) Cold-FX — Canada-based, cold and flu remedy (via @natbourre)
Twitter (Brand-Level) CyberKnife
Twitter (Brand-Level) Drive4COPD — sponsored by Boehringer (via @WendyBlackburn)
Twitter (Brand-Level) GoMeals (via InTouch Solutions ePharmaRx Blog)
Twitter (Brand-Level) MS Village Canada
Twitter (Brand-Level) PrilosecOTC
Twitter (Brand-Level) Race With Insulin — Novo Nordisk for Levemir
Twitter (Brand-Level) Strataderm
Twitter (Brand-Level) Xpresskindness — From Allergan: “My Expressions of Kindness is inspired by your kind acts & is donating up to $250,000 to 3 deserving charities when you spread kindness.” (via @roskadigital)
Twitter (Brand-Level) AstraZeneca Face Depression
Twitter (Brand-Level) Real MS Voices from Merck Serono S.A.
Twitter (Brand-Level) MaxClarity
NEW Twitter (Brand-Level) @transplantEXP--Transplant Experience from Astellas
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Pharma/Healthcare Employees (not necessarily official representatives of the company)
Search:
Program Type Name
Twitter (Pharma and Healthcare Company Employees) Arthur Alston, Roche
Twitter (Pharma and Healthcare Company Employees) Sabine Kostevc, Roche
Twitter (Pharma and Healthcare Company Employees) Colin Foster, Novartis
Twitter (Pharma and Healthcare Company Employees) Craig DeLarge, Novo Nordisk
Twitter (Pharma and Healthcare Company Employees) Shwen Gwee, Vertex
Twitter (Pharma and Healthcare Company Employees) Chris Hogg, CV Therapeutics
Twitter (Pharma and Healthcare Company Employees) Ray Kerins, Pfizer
Twitter (Pharma and Healthcare Company Employees) Conor McKechnie, GE Healthcare
Twitter (Pharma and Healthcare Company Employees) Marc Monseau, J&J
Twitter (Pharma and Healthcare Company Employees) Brad Pendergraph, Novartis
Twitter (Pharma and Healthcare Company Employees) Heather Reilly Powell, Daiichi Sankyo, Inc.
Twitter (Pharma and Healthcare Company Employees) Christopher Sampson, AstraZeneca
Twitter (Pharma and Healthcare Company Employees) Len Starnes
Twitter (Pharma and Healthcare Company Employees) Dennis Urbaniak, Sanofi-Aventis
Twitter (Pharma and Healthcare Company Employees) Rachel Yehezkel, Teva
Twitter (Pharma and Healthcare Company Employees) Paul Young, Sanofi-Aventis
Twitter (Pharma and Healthcare Company Employees) Stefan Stefan Schröder (Bayer): (via@andrewspong)
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Blogs (Pharma & Healthcare Companies)
Pharma and Healthcare company created blogs at the corporate or brand level
Search:
Program Type Name Description
Blogs Acromegaly Answers
Acromegaly Answers — “The Acromegaly Answers blog is an active resource for our widely dispersed community. Acromegaly Answers posts blogs from patients, caregivers, patient service specialists, nurses, doctors and others who live with and manage acromegaly every day.”
Blogs Advancing the Science (Mayo Clinic)
Advancing the Science (Mayo Clinic) — “The goal of Advancing the Science is to provide a virtual home for the extensive community interested in Mayo Clinic medical science and how it impacts treatments worldwide. It includes everyone who fits that description, whether student, scientist, science journalist, research collaborator, or one of Mayo’s more than 500,000 annual patient visitors or family members.”
Blogs AlliConnect
AlliConnect — brand blog supporting OTC weight loss drug Alli from GSK
Blogs Avenirdelasanté
Avenirdelasanté – GSK France blog (in French) – added by Why Dot Pharma
Blogs AZ Health Connections
AZ Health Connections — AstraZeneca’s corporate blog (via@emilydownward)
Blogs BTW
“BTW” Johnson and Johnson
Blogs Centocor 411
Centocor 411 — now defunct
Blogs Humana Crumple It Up Blog
Humana Crumple It Up Blog--from the innovation group at Humana
Blogs GE Healthcare
GE Healthcare — from @fxtrans
Blogs Kaiser Permanente Dr. Maring's Farmers' Market and Recipe Update
Kaiser Permanente Dr. Maring’s Farmers’ Market and Recipe Update — “Over my 37 years of practicing medicine at Kaiser Permanente in Oakland, CA, it’s become clear that what people eat is a major factor affecting their health. On this website I look forward to sharing good food with you and celebrating the people who grow it.”
Blogs Kilmer House
Kilmer House — another J&J blog, this one is focused on the history of the company
Blogs LillyPad from Lilly
LillyPad from Lilly (via @skoko)
Blogs Mayo Clinic Stress Management Blog
Mayo Clinic Stress Management Blog
Blogs McKesson Medical Imaging Talk
McKesson Medical Imaging Talk
Blogs Medtronic Australia
Medtronic Australia-Corporate blog for Medtronic in Australia
Blogs More than Medicine
More than Medicine — GSK corporate blog
Blogs Pfizer Think Science Now
Pfizer Think Science Now — “Welcome to Think Science Now, an online forum about science. Here you can meet members of the Think Science Now 100 (TSN100), a select group of science and medical professionals from across Pfizer who are working together for a healthier world.” Written by scientists from across Pfizer.
Blogs Physician Update (Mayo Clinic)
Physician Update (Mayo Clinic) — “News for Medical Professionals from Mayo Clinic”
Blogs Red Cross
Red Cross — corporate blog for the American Red Cross
Blogs Scar Treatment Blog
Scar Treatment Blog — brand blog for scar treatment Strataderm
Blogs Sharing Mayo Clinic
Sharing Mayo Clinic — “A blog with stories from patients, families, friends and Mayo Clinic staff”
Blogs Discuss Diabetes
Discuss Diabetes: "The purpose behind this blog is to create a place where members of our sanofi-aventis U.S. team can engage with you, share resources, and participate in the online conversation about living with diabetes."
Blogs Life Technologies
Life Technologies: "Welcome to the Life Technologies Social Hub, your one stop resource for real-time updates from the company's social media sites. Through this hub, it's easier than ever to join a Life Technologies' community, subscribe to the News & Views blog, stay connected with twitter and facebook, download our latest iTunes App or watch a video from our YouTube library."
Blogs MEDblog
MEDblog -- from sanofi-aventis in Belgium (in French)
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MySpace
Pharma and Healthcare companies corporate- or brand-level MySpace pages
Search:
Program Type Name Description
MySpace Addiction411
Addiction411 — page links to TurntoHelp.com, the unbranded site for Suboxone (Reckitt Benckiser, created by Commonhealth)
MySpace LAP-BAND
LAP-BAND
MySpace Living Positive by Design
Living Positive by Design — “Jack Mackenroth, from the hit reality television series “Project Runway,” has launched a national HIV and AIDS education campaign calledLiving Positive By Design in partnership with HIV and AIDS community organizations across the country. Living Positive By Design is being supported by Merck & Co., Inc.” (via @James Wells)
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Miscellaneous
Sites that combine either a number of “Web 2.0″ tools or several sources to create one data set or program and/or don’t fit neatly into one category
Search:
Program Type Name Description
Miscellaneous BirdsNBees
BirdsNBees — Adolescent Pregnancy Prevention Campaign of North Carolina “You text us a question to 36263. Within 24 hours, we text you back with an answer. It’s that simple. We won’t judge you or preach to you; you get the best advice and information that we can offer free of charge. All questions are welcome and no question is too outrageous. We’re here to help.”
Miscellaneous HealthMap
HealthMap — “HealthMap brings together disparate data sources to achieve a unified and comprehensive view of the current global state of infectious diseases and their effect on human and animal health. ”
Miscellaneous HHS, FDA, CDC Social Media Properties
HHS, FDA, CDC Social Media Properties
Miscellaneous Health Tweeder
Health Tweeder--aggregates Twitter content based on disease state in a unique visualization
Miscellaneous Map Pharma on Flickr
Map Pharma on Flickr — Just didn’t fit anywhere else (via Mark Bennett)
Miscellaneous Mayo Clinic Center for Social Media
Mayo Clinic Center for Social Media--"The Mayo Clinic Center for Social Media exists to improve health globally by accelerating effective application of social media tools throughout Mayo Clinic and spurring broader and deeper engagement in social media by hospitals, medical professionals and patients."
Miscellaneous Tweet Positioning System
Tweet Positioning System--created by Humana. Tracks tweets related to a single topic or hashtag including geolocation.
Miscellaneous Who is Sick?
Who is Sick? — “Who Is Sick was started in 2006 with a mission to provide current and local sickness information to the public – without the hassle of dealing with hospitals or doctors. With a strong belief in the power of people and a faith that user generated content can be extremely valuable, our team set out to create an entirely new system for tracking and monitoring sickness in your area and obtain sickness information. Information retrieved by tracking sickness in my area can also be used to map sickness trends in my region.”
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Wikis
Wikis focused entirely on some aspect of healthcare
Search:
Program Type Name Description
Wikis List of Medical Wikis
List of Medical Wikis — A list of 69 (as of Jan. 2010) medical wikis covering a wide variety of medical topics from @davidlrothman
Wikis Medpedia
Medpedia — “The Medpedia Project is a long-term, worldwide project to evolve a new model for sharing and advancing knowledge about health, medicine and the body among medical professionals and the general public. This model is founded on providing a free online technology platform that is collaborative, interdisciplinary and transparent.” “Only physicians and Ph.D.s are allowed to edit the Articles on Medpedia after they create an account and are approved as an Editor.”
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Non-English Based Programs
Programs that fit any of the above categories, but that are not in English
Search:
Program Type Name Description
Non-English Programs EsTuDiabetes
EsTuDiabetes — Spanish language verison of TuDiabetes
Non-English Programs Femmes Avant Tout
Femmes Avant Tout — a French blog for women affected by breast cancer, exchanging stories and experiences – supported by Roche France and active since 2007. Thanks to @skoko
Non-English Programs NiQuipedia
NiQuipedia — Swedish language Nicotine Replacement Therapy wiki
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Blogs (Patients and Caregivers)
Blogs created by patients or caregivers (not pharma/healthcare company blogs)
Search:
Program Type Name
Blogs (Patients and Caregivers) Alin's Site
Blogs (Patients and Caregivers) Beating Social Anxiety
Blogs (Patients and Caregivers) Beyond Meds
Blogs (Patients and Caregivers) brainhell
Blogs (Patients and Caregivers) Brass and Ivory: Life with Multiple Sclerosis
Blogs (Patients and Caregivers) ButYouDontLookSick
Blogs (Patients and Caregivers) Chemo Chic
Blogs (Patients and Caregivers) Confessions Of A CF Husband
Blogs (Patients and Caregivers) Cystic Life
Blogs (Patients and Caregivers) Diabetes 24-7
Blogs (Patients and Caregivers) DiabetesMine
Blogs (Patients and Caregivers) Disruptive Women in Healthcare
Blogs (Patients and Caregivers) Don't Fear Diabetes
Blogs (Patients and Caregivers) Duncan Cross
Blogs (Patients and Caregivers) Every PatientÕs Advocate
Blogs (Patients and Caregivers) Free My Brain From Migraine Pain
Blogs (Patients and Caregivers) Furious Seasons
Blogs (Patients and Caregivers) If You're Going Through Hell Keep Going
Blogs (Patients and Caregivers) In Sickness and In Health: A Place for Couples Dealing with Illness
Blogs (Patients and Caregivers) Lemonade Life
Blogs (Patients and Caregivers) Look Me In The Eye
Blogs (Patients and Caregivers) The New Life of e-Patient Dave
Blogs (Patients and Caregivers) The Mom & Me Journals
Blogs (Patients and Caregivers) Ninjabetic
Blogs (Patients and Caregivers) PatientView
Blogs (Patients and Caregivers) Postpartum Progress
Blogs (Patients and Caregivers) Pregnant Stephanie
Blogs (Patients and Caregivers) Quantified Self
Blogs (Patients and Caregivers) Rhymes with Migraine
Blogs (Patients and Caregivers) Running for My Life: Fighting cancer one step at a time
Blogs (Patients and Caregivers) Six Until Me
Blogs (Patients and Caregivers) Soulful Sepulcher
Blogs (Patients and Caregivers) Survive the Journey
Blogs (Patients and Caregivers) UC to J-Pouch Story
Blogs (Patients and Caregivers) Vicarious Therapy
Blogs (Patients and Caregivers) Reasonably Well
Blogs (Patients and Caregivers) Understanding Invisible Illness
Blogs (Patients and Caregivers) Possibilism
NEW Blogs (Patients and Caregivers) Rheumatoid Arthritis Warrior
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Blogs (Industry Observers)
Industry Observers (not pharma/healthcare company or patient blogs)
Search:
Program Type Name
Blogs (Industry Observers) 33 Charts
Blogs (Industry Observers) Action for Better Healthcare
Blogs (Industry Observers) AdPharm
Blogs (Industry Observers) gallery of pharma ads
Blogs (Industry Observers) AdPharmBlog
Blogs (Industry Observers) AdvanceMarketWoRx: Notes From the Back of the Book Blog
Blogs (Industry Observers) Advertising and Health
Blogs (Industry Observers) AlignMap
Blogs (Industry Observers) Aurora Comms Blog
Blogs (Industry Observers) Avatar Newsletter
Blogs (Industry Observers) Beaker's Blog
Blogs (Industry Observers) Behind Online Phama
Blogs (Industry Observers) BioJobBlog
Blogs (Industry Observers) Blogaceutics
Blogs (Industry Observers) CenterWatch
Blogs (Industry Observers) Compass Healthcare Blog
Blogs (Industry Observers) Cross-Border Biotech Blog
Blogs (Industry Observers) Denise Silber's eHealth
Blogs (Industry Observers) Diabetes Mine
Blogs (Industry Observers) Drug Channels
Blogs (Industry Observers) Drug Injury Watch
Blogs (Industry Observers) E-Patients
Blogs (Industry Observers) The eCTD Summit
Blogs (Industry Observers) ePharma Rx
Blogs (Industry Observers) EPG Health Media Blog
Blogs (Industry Observers) ePharma Canada
Blogs (Industry Observers) ePharma Summit
Blogs (Industry Observers) Eye for Pharma
Blogs (Industry Observers) Extrovertic
Blogs (Industry Observers) Florence Dot Com
Blogs (Industry Observers) Found in Cache
Blogs (Industry Observers) ePharma Summit
Blogs (Industry Observers) Future of Biopharma
Blogs (Industry Observers) Gandolf's Marketing Magic
Blogs (Industry Observers) Getting To Integrative Health & Medicine
Blogs (Industry Observers) HealthEd Blog
Blogs (Industry Observers) The Health Care Blog
Blogs (Industry Observers) Health Populi
Blogs (Industry Observers) The Healthcare Blog
Blogs (Industry Observers) HealthCareVox
Blogs (Industry Observers) HealthTalker Blog
Blogs (Industry Observers) HealthTechnica
Blogs (Industry Observers) Healthy Conversations Blog
Blogs (Industry Observers) Healthcare Vox
Blogs (Industry Observers) Hospital Impact
Blogs (Industry Observers) HIV Viral Load Blog
Blogs (Industry Observers) A Human Voice
Blogs (Industry Observers) IdeaPharmer
Blogs (Industry Observers) IgniteBLOG: The Perfect Storm
Blogs (Industry Observers) Impactiviti Blog
Blogs (Industry Observers) The IN VIVO Blog
Blogs (Industry Observers) Kru Research
Blogs (Industry Observers) LifeSensor Weblog
Blogs (Industry Observers) Marketing 4 Health
Blogs (Industry Observers) Med 2.o
Blogs (Industry Observers) Medical Brochures Blog
Blogs (Industry Observers) Medical Technology Blog
Blogs (Industry Observers) Medical Translation Blog
Blogs (Industry Observers) My Insurance Expert
Blogs (Industry Observers) Myelin Repair Foundation Blog
Blogs (Industry Observers) Palio Never Be Forgotten Blog
Blogs (Industry Observers) One Eleven Interactive Blog
Blogs (Industry Observers) Ozmosis Blog
Blogs (Industry Observers) Med 2.0
Blogs (Industry Observers) Med Men--by HC&B Healthcare Communications
Blogs (Industry Observers) Partnerships with CROs
Blogs (Industry Observers) Pharma 2.0
Blogs (Industry Observers) Pharmacy Technology Blog
Blogs (Industry Observers) Pharmafocus
Blogs (Industry Observers) Pharma BlogoSphere
Blogs (Industry Observers) Pharma Marketing Blog
Blogs (Industry Observers) Pharma SEM Blog
Blogs (Industry Observers) Pharma Strategy Blog
Blogs (Industry Observers) Pharmaceutical Jobs Blog
Blogs (Industry Observers) The Pharmaceutical News
Blogs (Industry Observers) PharmaGossip
Blogs (Industry Observers) Pharmalot
Blogs (Industry Observers) Pharmaphorum
Blogs (Industry Observers) Pharmas Market with Mike Huckman
Blogs (Industry Observers) PharmTech Talk
Blogs (Industry Observers) Pixels and Pills
Blogs (Industry Observers) Pharma-Bytes
Blogs (Industry Observers) Salute 2.0
Blogs (Industry Observers) Science Roll
Blogs (Industry Observers) STweM
Blogs (Industry Observers) What's Your Digital iQ?
Blogs (Industry Observers) Wishful Thinking in Medical Education
Blogs (Industry Observers) Word on Health
Blogs (Industry Observers) World of DTC Marketing
Blogs (Industry Observers) WSJ.com: Health Blog
Blogs (Industry Observers) IPQC Blog
Blogs (Industry Observers) FDAzilla
Blogs (Industry Observers) Medigital
Blogs (Industry Observers) EFPIA Blog
Blogs (Industry Observers) GlycosMedia
Blogs (Industry Observers) Siren Interactive (Siren's Song)
Blogs (Industry Observers) Digilicious
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Twitter (Industry Observers)
Industry observers (non-pharma and healthcare company employees) using Twitter
Search:
Program Type Name
Twitter (Industry Observers) Jonathan Richman
Twitter (Industry Observers) Jack Barrette
Twitter (Industry Observers) Wendy Blackburn
Twitter (Industry Observers) Janet Carlson
Twitter (Industry Observers) John Chilmark
Twitter (Industry Observers) Jane Chin
Twitter (Industry Observers) Sally Church
Twitter (Industry Observers) Mark Davis
Twitter (Industry Observers) March Drossman
Twitter (Industry Observers) Jim Edwards
Twitter (Industry Observers) Suki Fuller
Twitter (Industry Observers) Timothy Graham
Twitter (Industry Observers) Fabio Gratton
Twitter (Industry Observers) James Harper
Twitter (Industry Observers) Ellen Hoenig Carlson
Twitter (Industry Observers) Fard Johnmar
Twitter (Industry Observers) Carlen Lea
Twitter (Industry Observers) John Mack
Twitter (Industry Observers) Gregg Masters
Twitter (Industry Observers) Sarah Morgan
Twitter (Industry Observers) Eileen O'Brien
Twitter (Industry Observers) Kevin Pho (Kevin MD)
Twitter (Industry Observers) Allison Rigel
Twitter (Industry Observers) Dorothy Wetzel
Twitter (Industry Observers) Steve Woodruff
Twitter (Industry Observers) Fierce Pharma
Twitter (Industry Observers) PharmaProEditor
Twitter (Industry Observers) Action for Better Healthcare
Twitter (Industry Observers) Aurametrix
Twitter (Industry Observers) ExL Pharma
Twitter (Industry Observers) Digital Pharma
Twitter (Industry Observers) Partnerships with CROs
Twitter (Industry Observers) ePharma
Twitter (Industry Observers) Future of Biopharma
Twitter (Industry Observers) Breat Cancer Survivors
Twitter (Industry Observers) Kurt Mueller
Twitter (Industry Observers) Life Science Leader
Twitter (Industry Observers) Eye for Pharma
Twitter (Industry Observers) American Society of Clinical Oncology
Twitter (Industry Observers) Bertalan Meski
Twitter (Industry Observers) Mark Makuch
Twitter (Industry Observers) Jack Bilson
Twitter (Industry Observers) Janet Carlson
Twitter (Industry Observers) Pierre Yves Arnoux
Twitter (Industry Observers) The HealthEdGroup
Twitter (Industry Observers) CenterWatch
Twitter (Industry Observers) Children's Hospital of Philadelphia's Center for Biomedical Informatics
Twitter (Industry Observers) Pixels and Pills
Twitter (Industry Observers) Betsy Stevenson
Twitter (Industry Observers) Angel Gonzalez
Twitter (Industry Observers) Emily Downward
Twitter (Industry Observers) Eric Brody
Twitter (Industry Observers) Clifford Mintz
Twitter (Industry Observers) BioJobBlog
Twitter (Industry Observers) Safa Sadeghpour
Twitter (Industry Observers) Andres Heuberger
Twitter (Industry Observers) Vertical Portals
Twitter (Industry Observers) Blogaceutics
Twitter (Industry Observers) Andrew Spong
Twitter (Industry Observers) James Wells
Twitter (Industry Observers) Joel Selzer
Twitter (Industry Observers) Nicole Johnson
Twitter (Industry Observers) Mark Bennett
Twitter (Industry Observers) Getting2ihm
Twitter (Industry Observers) Daniel Ghinn
Twitter (Industry Observers) Natalie Bourre
Twitter (Industry Observers) Dominic Tyer
Twitter (Industry Observers) Kevin Nalty
Twitter (Industry Observers) Eva Velasco
Twitter (Industry Observers) Ed Bennet
Twitter (Industry Observers) Gilles Frydman
Twitter (Industry Observers) Alex de Carvalho
Twitter (Industry Observers) Pharmaphorum
Twitter (Industry Observers) Kevin Clauson
Twitter (Industry Observers) David Brightmore
Twitter (Industry Observers) Kurt Proctor
Twitter (Industry Observers) Paulo Machado
Twitter (Industry Observers) Kathie Clark
Twitter (Industry Observers) Sam Walmsley
Twitter (Industry Observers) Melissa Davies
Twitter (Industry Observers) Irish Pharmaceutical Healthcare Association (IPHA)
Twitter (Industry Observers) Mike Huckman
Twitter (Industry Observers) Myelin Repair Foundation
Twitter (Industry Observers) Jeremy Grushcow
Twitter (Industry Observers) Martino Chiaviello
Twitter (Industry Observers) Dave Anderson
Twitter (Industry Observers) Mike Myers
Twitter (Industry Observers) Palio
Twitter (Industry Observers) Andy Levitt
Twitter (Industry Observers) Leigh Householder
Twitter (Industry Observers) Abby Lowe
Twitter (Industry Observers) Stuart Gandolf
Twitter (Industry Observers) Raphaelle Laubie
Twitter (Industry Observers) EPG Health Media
Twitter (Industry Observers) SRxA
Twitter (Industry Observers) Nancy Pratt
Twitter (Industry Observers) Tom O'Brien
Twitter (Industry Observers) Ritesh Patel
Twitter (Industry Observers) Jeff Greene
Twitter (Industry Observers) Odom Lewis
Twitter (Industry Observers) Cancer Treatment Centers of America
Twitter (Industry Observers) Tony Chen
Twitter (Industry Observers) Greg Waitley
Twitter (Industry Observers) Kevin Kruse
Twitter (Industry Observers) Julie O'Donnell
Twitter (Industry Observers) Xavier Lorenz
Twitter (Industry Observers) Paul Jacobs
Twitter (Industry Observers) Paul Hoff
Twitter (Industry Observers) EFPIA
Twitter (Industry Observers) Silja Chouquet
Twitter (Industry Observers) Christiane Truelove
NEW Twitter (Industry Observers) Mario Macinovich
NEW Twitter (Industry Observers) Leigh Fazzina
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Marketing Professional Communities
Communities focused on pharma and/or healthcare marketing
Search:
Program Type Name Description
Marketing Professionals Communities FDASM
All the news and information related to the recent FDA hearings on social media in pharma and healthcare.
Marketing Professionals Communities Ideagoras Community
“My Ideagoras is the “place of assembly” of those embracing the new social communications.”
Marketing Professionals Communities medXcentral
“Medical & Healthcare Industry Social Media Network”
Marketing Professionals Communities Path of the Blue Eye Project Online Community, Living the Path
This community is designed to encourage collaboration and knowledge sharing among health marketing communications professionals from around the world. The community features numerous articles, data and case studies. Health marketers can also submit news articles and blog posts via the community’s social news site and ask questions of their peers at its Q&A Center.
Marketing Professionals Communities Pharma Marketing Network Forums
“The Leading Online Community of Pharmaceutical Marketing Experts”
Marketing Professionals Communities Social Pharmer
“A social network for anyone interested or involved with social media in the pharma and healthcare industry.”
Marketing Professionals Communities #HCSMEU
#HCSMEU- Healthcare Social Media Europe Discussion
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Additional Resources
Search:
Program Type Name Description
Additional Resources Hospital Social Networking List
Comprehensive list from Ed Bennett featuring examples of 600 Hospitals using social media including: 280 YouTube Channels, 382 Facebook pages, 470 Twitter Accounts, and 82 Blogs
Additional Resources The Global Social Media Network
List of non-healthcare social media examples
Additional Resources List of Social Media Examples
List of non-healthcare social media examples
Additional Resources Monty Metzger's Blog
List of non-healthcare social media examples
Additional Resources Health 2.0
List of “Health 2.0″ companies
Additional Resources Instant Social Media for Life Scientists
Instant Social Media for Life Scientists — Here’s a collection of different links to social media examples in the life sciences area including Biotech. There is a mix of blogs, Twitter, and Facebook accounts. (from@Comprendia)
Additional Resources Additional list of Healthcare/Pharma Twitterers
Doctors and medical students on Twitter
Additional Resources Australian Hospitals using Social Media
Australian Hospitals using Social Media--935 examples total (from@sandnsurf)
Additional Resources TweetPharm
TweetPharm: "TweetPharm is a free interactive infographic that tracks pharmaceutical companies' use of Twitter. This aggregator compiles the real-time Twitter information of pharma companies currently taking advantage of this social media channel and compiles it into an easy-to-read dashboard plus a real-time interactive 'visualizer.'"
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