Barre google de traduction indispensable!
Aside from conspiracy theories and corporate espionage (which may be true as well)---there is another force which comes into play in medicine. The hierarchies of medical disciplines.
I posted this paper earlier in the year. It was written in the 1980s---and discusses the favoring of the neurologists' explanation of MS over the vascular paradigm. Yes, this debate has been waging for many, many years--
From the paper on Social Constructionism and medical sociology: a study of the vascular theory of MS--
"A recent debate surrounding the pathogenesis of multiple sclerosis is analysed in terms of the skills, interests and backgrounds of the medical personnel involved. It is noted that the proponents of the vascular theory possess developed expertises in interpreting disease in
structural, vascular terms, whereas their opponents' skills lie in immunology or neurology. Different observers have produced different conceptions of the disease because modes of
observation, and the points from which observation takes place, differ. It is also noted that the debate over the causation and treatment of MS has occurred between a large and powerful social group and a weak and marginal one. The effects of this power inequality on the production and assessment of knowledge about MS are investigated."
The authors go on to explain how the "large and powerful group" of more highly paid and trained neurologists got to "own" MS. Because of this, any other theories or modalities of MS diagnosis or treatment from weaker and less powerful medical groups or patients are shot down, called quack theories and easily discounted.
Please read this paper. It talks about Dr. Philip James studies in Scotland in the 80's. He likened the MS disease path to decompression sickness and oxygen deprivation found in divers. James, like Dr. Roy Swank, thought this might be due to fat blockages in the vascular system, and he had much success treating MS patients with hyperbaric oxygen. A good, interesting read, and one that helps us understand what we're up against- and why the internet is a democratizing power in this "social constructivism" and how we can change the dialogue, and insist on more vascular research.
We may not be able to control what the main stream/corporate press publishes in terms of research results...BUT we can inform one another, and help the vascular doctors have a platform for their research.
Keep the faith. Spread the word. And don't let the heirarchical turkeys get you down...:)
The Wall Street Journal Does CCSVI---Multiple Sclerosis Blog By Julie Stachowiak, Ph.D., Multiple Sclerosis Guid
By THOMAS M. BURTON
Research has emerged casting doubt on a popular new theory that multiple sclerosis is caused or worsened by blockages in the jugular veins.
In separate studies from Germany and Sweden, to be published Monday in the Annals of Neurology, researchers report they found no such trend of blockages in patients' jugular veins, which carry blood away from the brain back to the heart. The theory, championed by an Italian vascular surgeon and some doctors in the U.S., has inspired thousands of MS patients to get tested and, in some cases, to get treatment such as the insertion of metal stents in jugular veins to keep them open.
"Our results challenge the hypothesis that cerebral venous congestion plays a significant role in the [disease process] of MS," wrote Florian Doepp, a neurologist at Humboldt University in Berlin, and colleagues. They did ultrasound and other imaging exams on 56 MS patients and 20 normal control-group patients. "Our results suggest the cerebral venous drainage in patients with MS is not restricted," they wrote.
A smaller study from Umea University in Sweden looked at 21 MS patients and 20 healthy patients and concluded, "We found no differences regarding internal jugular venous outflow."
MS is generally thought of as an autoimmune disease, meaning that a patient's body attacks its own cells. Symptoms vary widely but often involve progressive weakness and pain and can include speech disorders and spasticity.
The theory about jugular-vein blockage originated from Paolo Zamboni of the University of Ferrara in Italy. Dr. Zamboni's reports have spread rapidly among patients through the Internet, propelling thousands of MS patients to get examined or treated.
At Stanford University in California last year, a doctor treated 40 MS patients with balloon angioplasty or stents to open veins. Some patients reported symptom improvement. After one patient died and another underwent emergency surgery for a stent that floated into his heart, the university shut down the program but says it is considering further research.
Currently, a study at the State University of New York at Buffalo is examining 1,000 patients after about 10,000 sought to participate in the research.
Dr. Zamboni said he stands by his findings. He said he hasn't read the Swedish report, but he questions some methodology in the German research. He said his own multiyear survey of 500 MS patients has found that 90% have vein blockage, compared with only 2% of 1,000 control-group patients who are healthy or have other neurological diseases.
The reports from Germany and Sweden won't be the final word. The National Multiple Sclerosis Society, along with its sister group in Canada, have funded more than $2.4 million in studies to evaluate the vein-blockage theory. However, these two reports from Europe have heightened the skepticism of some MS experts about vein-blockage underlying MS.
Stephen L. Hauser, editor-in-chief of Annals of Neurology and chief of neurology at the University of California, San Francisco, said of the European research that "these two papers tried to replicate" Dr. Zamboni's findings, and that "the original concept hasn't been confirmed." Dr. Hauser had complained to Stanford after his patient had to undergo emergency surgery there after a stent in a vein floated into his heart
Experimental MS treatment suffers setbac
The New York Times has gotten "in the game" (in our game, at least) and posted a full-length article on CCSVI: From M.S. Patients, Outcry for Unproved Treatment
I had run across this myself last night while winding down and scanning the New York Times online - by this morning, no fewer than 20 people had sent me a link to this article. As a person living with multiple sclerosis who also tries to bring news to others with MS, I find the writing style kind of fascinating. For instance, I go out of my way to never refer to a person with MS as a "patient," unless the article is about our actual role as patients in a relationship with a physician. The rest of the time, we are people. Just a nuance, but an important one to me.
I am intrigued with how easily the author, Denise Grady, mentions facts and anecdotes about CCSVI and the "liberation procedure" - she states things once with minimal detail, but gets her point across. I am always backtracking and try to avoid saying things in general terms, because I figure that if I want to know, surely many of you will, too. This statement would make me nervous, for instance: "Another doctor, Marian Simka, who has been performing the procedure in Pszczyna, Poland, has reported that it has made symptoms worse in some patients." What does that mean? I'm going to look it up. I'll get back to you.
Anyway, if you haven't yet read the article, take a look. Remember, this article is not written for those of us closer to the matter, it's written to explain what is going on to the rest of the world - for me, it is an odd experience to read about the whole CCSVI thing this way, from kind of an outsider's perspective.
I am truly enjoying reading all of the comments posted on Tara-Parker Pope's blog, Well, posted by people with MS and those hearing about CCSVI for the first time (I am guiltily imagining a cocktail party with all of these people in attendance - how I would love to see that). Check them out (and contribute) yourself: An Unproven Treatment for Multiple Sclerosis. Of course, as always, you are welcome to leave your feelings in the comment section below.
August 2, 2010
Thank you Premier Robert Ghiz
You and Premier Brad Wall are helping restore some of my faith in the Country I Love.
There is no way I can express my gratitude to let the both of you know how I feel.
My wife and I are traveling to San Diego where hopefully, she can be treated for CCSVI.
Unfortunately, we can not wait for treatment here, but now there will be hope for other Canadians. Due to the both of you taking the reins of this issue, you could quite possibly save hundreds, if not thousands, of CCSVI sufferers and their families from unnecessary grief and pain. I am hopeful that with your leading example, the other premiers will follow. I know that you and Premier Wall will have the backing of the majority of fellow Canadians on this issue. Premier Ghiz and Premier Wall ,when you meet with the other premiers On Thursday August 5th 2010, you will walk in there with your heads held high and know that Canada is behind you!!!
Sincerely all of the
Husbands, Mothers, Parents and Children of CCSVI Sufferers
Thank you for letting us be part of Canada's economic recovery
I have had MS for 14 years, barely walking, loss of balance, cold blue and hot purple feet, hands not working, cognitive issues....the CCSVI all makes sense. Have tried about everything alternative and am very hopeful for CCSVI. Hoping to get tested soon! Everything I read is either very positive results or not much change. What is the worst that can happen with angioplasty? Can the veins collapse? Blood clot? Stroke? I feel I need to know dangers as well as positives prior to having the procedure done...