Tuesday, September 28, 2010

No Term Limits On Truth

One of the things I enjoy about having a computer is the web given right to have an e-mail address of my very own. I actually have several just because it tickles me. My inbox is usually 80% junk, spam and chain letters. 10% is family friends and acceptable advertisements for “gotta haves and can’t afford” items on my wish list. The rest is from the MS cyber world. Clicking on my “inbox” is a bit like Halloween. I never know whether I will get a treat from a friend, or a trick from the not so friendly. My favorite treats are when I get a note from someone on the internet who has been successfully treated for CCSVI. I figuratively carve another mark on my MS wall and smile. No matter how many times I hear a new story or read all of the details, I am never bored. I feel pretty humble when someone tells me that one of my blogs or videos had anything to do with their journey to liberation. The examples and encouragement of others who went before me have a permanent place on my “People I will always be grateful to” page of my journal.

From the beginning of my own journey, people seemed to be a bit annoyed at others who either had doubts about the validity of CCSVI or had something sarcastic to say to those of us who didn’t want doubts planted into freshly cultivated minds. Every once in a while someone would tell me that they did not have the success or improvements they wanted or expected. That is no little disappointment. All of us are aware of the work and money involved in grasping that brass ring. I began to keep an eye out for the stories of disappointed PwMS who sometimes sheepishly or apologetically come forward with their more negative results. I too was guilty of the “Don’t nobody bring me no bad news” mindset. After all, if people started to complain it would only give ammunition for the opposition would it not? One day out of the blue, the light of revelation shone brightly in my little head. The fact that people were not realizing improvement in their MS symptoms was in truth further evidence in the reality of the whole MS venous insufficiency connection. A number of observations began to materialize. Anyone who sincerely wanted to have the procedure with the belief it would work should have had some improvement. That would give credence to the placebo theory we get lambasted with regularly. Why wouldn’t my friend who doggedly raised the funds to travel overseas not get a placebo effect when I had my procedure here at home and have one of the most spectacular placebo effects in my little group of liberated friends? Surely I didn’t expect more than they did from the angioplasty. In fact, I distinctly remember telling people I didn’t expect much at all. A little respite from the crushing fatigue and the cognitive ability to have a five minute conversation without word fishing or losing my entire train of thought was an ambitious goal from my point of view back then.

The next interesting observation is that all angioplasty providers are not created equally, figuratively speaking. If there is one consistent aspect of this procedure, it is that there are not as yet any “liberation procedure” textbooks or classes available. Each doctor who does this procedure had to have a first patient. Even Dr. Zamboni admits to the need for an undetermined amount of research and hands on experience to learn better techniques and protocols. The Georgetown failures are a good example of insufficient training. I thought it spoke well of them that they realized they were not properly prepared to continue providing the treatment until they had the opportunity to back up and regroup. They could have continued with less than stellar results and kept the facts to themselves, at least for some time. Even the most gung-ho of CCSVI advocates are exhibiting caution when encouraging others. It’s important for us to know the truth, not try to hide results none of us want to have happen to us. It isn’t too hard to want to shout our new mobility on the rooftops. It takes a bit more courage to come before our peers and admit that it just plain did not work. It’s no secret what my layman’s opinion is concerning CCSVI and MS. As far as the medical world is concerned,since I am not knowledgeable or trained in any medical profession my observations can be taken with a grain of salt. However, wrong or right, I believe that CCSVI and Multiple Sclerosis go hand in hand. Even at this early stage, the percentages of positive results are incredibly high at anywhere from 93% to 99%. Dr. Mark Freedman and others have postulated that perhaps a high percentage of any test group will have CCSVI. I suppose that could be true, but I seriously doubt that.

Approximately one third of the people who begin disease modifying drug therapy actually become worse with an increase in symptom severity. That would tend to strengthen the assertion that MS is not one but two, possibly three different diseases. Though thirty years of shameful drug experimentation has brought researchers no closer to any tangible proof that MS is an autoimmune disease, neurologists and MS specialists worldwide claim to believe that it is. If the drug trials and studies that put Tsybari back on the market was scrutinized like the studies demanded for CCSVI, it would not be on the shelf. The 40 or so years of the course of MS makes it easy for unsuspecting doctors and patients to be grateful for any treatment that shows promise. It doesn’t matter that any and all other treatment possibilities have been quickly and quietly shut down by the real snake oil peddlers, including angioplasty.

Given the circumstances in which we find ourselves, I am pleasantly surprised that there have been as many successful procedures reported. How many more drug and medical disasters are we going to avert in hindsight only? In reality, PwMS aren’t even guinea pigs. Earnest trials have some expectation of positive results. When the limited usefulness of drug therapy is questioned, the standard answer always includes some reference to how much worse it could have been without the miracle drugs.Multiple sclerosis is a chronic disease. It may take 40 years to run its course. In developing drugs to slow its progression, doctors have used brain scans to show lesions which the drugs appeared to prevent, and gave quicker results. Some experts thought the lesions were the disease but little effort was made to check. But preventing lesion formation does not prevent disability caused by the condition. The drugs deal with the lesions, not the disease. It is evident that we have been carefully led to the wrong conclusion that MS is an autoimmune disease. We also are now aware that the venous connection to MS is a thirty year old viable theory, not a dog and pony show or the imaginings of a former vascular surgeon.

The following I posted in my notes earlier today, but bears repeating.
"In view of the given facts we must ask ourselves whether the MS patient's shameless exploitation for an as senseless as profitable drug experimentation grounded in an illogical MS "definition" and "identification", does not form an ethical issue."-Dr. F. Alfons Schelling

Dr. Schelling saw the link between vascular abnormalities in MS in 1980, and spent the better part of the last 30 years trying to get the medical world to listen. The loudest opponents of the CCSVI theory continually points to the "overnight " sensationalism on the internet. Dr. Zamboni simply kept it under the radar long enough to gather irrefutable evidence which they still maintain is all smoke and mirrors! This part of the story is not given enough attention. If people knew how long the CCSVI bomb has been chilling just under the surface, they might pay a bit more attention to the facts and less time trying to help the liars and hypocrites try to wiggle out of the web they have spun for themselves.
Successful or no, I look forward to everyone’s own account of their MS journey on through liberation. There is no time limit on deceit, inhumane treatment and violation of trust discovery. It has been 30 years with breakthroughs as early as 1980 and again in 1990. Twenty years later the truth begins its’ claim on justice.
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