Wednesday, October 13, 2010

Turning the Tables on the Placebo Effect

I feel so special! A great deal of time, effort and money has been allocated to tell the world that I am the victim of the "placebo effect":

1. “Any effect that seems to be a consequence of administering a placebo; the change is usually beneficial and is assumed result from the person's faith in the treatment or preconceptions about what the experimental drug was supposed to do; pharmacologists were the first to talk about placebo effects but now the idea has been generalized to many situations having nothing to do with drugs.”
2. “A beneficial effect, produced by a placebo drug or treatment, that cannot be attributed to the properties of the placebo itself, and must therefore be due to the patient's belief in that treatment or perhaps a psychotic break. The number of people who are either suffering from .
3. In medical research, placebos depend on the use of controlled and measured deception. Common placebos are inert tablets, sham surgery,[3] and other procedures based on false information.[1] In one common placebo procedure, a patient is given an inert pill, told that it may improve his/her condition, but not told that it is in fact inert. Such an intervention may cause the patient to believe the treatment will change his/her condition; and this belief may produce a subjective perception of a therapeutic effect, causing the patient to feel their condition has improved. This phenomenon is known as the placebo effect.

Lets apply these definitions to other treatments for Multiple sclerosis:

1. Tysabri (natalizumab) was approved in 2004 for the treatment of multiple sclerosis through regular intravenous injections. It was recalled from the market in 2005 after three patients developed the rare brain infection, two of whom died. The medication was reintroduced in July 2006 with stronger warnings about the potential Tysabri side effects, and the drug was only made available under strict usage guidelines to limit the risk of PML infections.
Since its return to the market, this most recent report is at least the ninth patient to develop the infection. Estimates indicate that about one in every 1,000 patients treated with the Tysabri experience the side effect. The lastest case involves a patient outside the United States who developed the brain infection after his 34th injection.
Reported positive effects: All fall under the same definition for the placebo effect in angioplasty for CCSVI.

2. Avonex
FLU-Like Symptoms
Fatigue
Headache
Nausea/Vomiting
Mood/Behavior Changes
Muscle Pain/Cramps
Injection Site Reactions
Insomnia
Grogginess/Confusion
Palpitations
Dizziness
Reported positive effects: All fall under the same definition for the placebo effect in angioplasty for CCSVI.
3.Copaxone: •
Injection Site Reactions
Itch/Rash
FLU-Like Symptoms
Chest Pain/Tightness
Hot Flashes
Headache

Reported positive effects: All fall under the same definition for the placebo effect in angioplasty for CCSVI.

4.Rebif:
Flu-Like Symptoms
Injection Site Reactions
Fatigue
Headache
Nausea/Vomiting
Irregular/Heavy Periods
Reported positive effects: All fall under the same definition for the placebo effect in angioplasty for CCSVI.

Given the amount of time for the studies and clinical trials for all the above treatments, who do we allow to make the decision concerning the placebo effect with angioplasty for CCSVI?

If you please, can anyone from the medical community explain the depth and breadth of my placebo effect? How much longer might I expect to be free of nearly all of the progressive, painful and documented symptoms I have endured for 15 years since diagnosis? The presence of obligclonal bands required for a positive diagnosis was found in my spinal fluid. An ongoing series of MRI’s have proven definitively for the most discerning and conservative MS specialists the lesions in both my brain and spinal cord. Ongoing medical treatment including Avonex, copaxone, solumedral IV therapy, Dextran IV therapy, and approximately 15 other prescription drugs were employed over the span of time noted. Rediagnosed as Secondary progressive about three years ago, I became totally dependent on a power wheelchair which required three professional opinions to satisfy my insurance company. I required extensive physical therapy in order to swallow, raise my hands above my head and train my legs to employ the use of AFO’s when using a walker became impossible. Again the $3,000 price tag associated with the AFO’s required irrefutable evidence of their necessity from my insurance company. Pre-procedure my EDSS was 7.5. I am currently clinically clear of all but trace symptoms of Multiple Sclerosis. In addition, after I received the angioplasty, I recovered from symptoms I theretofore had no knowledge. This does not fall within the range of any definition I have researched for the placebo effect. Extensive cognitive therapy was utilized to enable me to speak clearly enough to be understood. The beginning of speech therapy was difficult, humiliating and laborious. Simple math tasks were timed. It took 65 seconds for me to complete the following: “If you have 10 apples in a basket and you drop 5 apples from your basket, how many apples do you have in your basket?” My spelling, once exemplary with no need for a spell check was as follows:
Done: dun; speak: spek; decide: disid. Those are actual words from my speech therapy workbook. A new MRI shows reduction in the size of a large lesion in my brain by 1/3 and the disappearance of two spinal lesions.

As appreciative as I am for my success, it is difficult to watch others who are at this time, destined to remain or progress in their own struggles with Multiple Sclerosis. An issue which I am addressing at this time is the genetic connection to CCSVI and MS. I have six children and fifteen grandchildren. I have other family members with MS. The unseemly time restraints demanded by the MS societies, doctors and other detractors is unacceptable. CCSVI exists in the young children of people with MS and have not yet exhibited any symptoms of MS. We are demanding that your unreasonable expectations and double standard rules will not touch the next generation. This subject has been neglected far too long.
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