Research casts doubt on new MS theory - story in yesterday's National Post
Another take on this issue. Interesting observation at the end of the article re: the Buffalo Clinic and potential conflict of interest.
"Research released yesterday has further complicated a feverish scientific debate over the treatment of multiple sclerosis, finding that as few as 56% of MS patients show signs of a blood-vessel problem that a controversial new theory cites as the cause of the disease.
Researchers also identified the blood problem in about a quarter of healthy people tested.
The University of Buffalo scientist who headed the study acknowledged the findings cast some doubt on the suggestion that a narrowing in neck veins helps trigger MS, although he says it clearly shows there is a significant link between the two.
The cause-and-effect relationship is argued by an Italian vascular surgeon, Dr. Paolo Zamboni, whose ideas have thrown the MS world into an uproar, pitting hopeful patients against skeptical neurologists.
Dr. Robert Zivadinov said that, based on his new findings, there is no justification for patients to undergo a vein-opening operation developed by the Italian surgeon or other, similar "endovascular" treatments until further studies indicate they are useful.
"I do not recommend any procedure at this time. I think we first need to understand the diagnostic issues," said Dr. Zivadinov, who is working closely with the Italian surgeon.
"We don't know whether the endovascular treatment is helping or not."
The Buffalo neurology professor did say that his results should be encouragement for more research into the connection between MS and the vein narrowing problem that Dr. Zamboni dubbed chronic cerebrospinal venous insufficiency (CCSVI).
MS specialists who have questioned the hypothesis, though, suggested the new findings call into question much of what the Italian physician has claimed.
"The whole notion of cause and effect is out the window," said Dr. Mark Freedman, an Ottawa Hospital neurologist and leading MS researcher.
Dr. Zamboni argues that a blockage in veins draining blood from the brains of MS patients causes blood to back up and cause inflammation that damages the myelin coating around nerve cells. That inflammation is known to trigger MS.
He published research that found the vein narrowing in 65 MS patients, but in none of the 235 healthy people who were also tested. A later study by Dr. Zamboni reported that using angioplasty -- where a tiny balloon is inflated inside a blood vessel -- to unblock patients' veins improved their condition. That study lacked a comparison group that did not get the operation, and other measures to factor out the placebo effect.
Fuelled by positive media coverage, though, the findings sparked a massive response among patients who have the chronic and frequently debilitating disease, with thousands seeking out testing and treatment.
Neurologists voicing skepticism about the research have been criticized as unwilling to accept new ideas and beholden to the pharmaceutical industry and its treatments.
Dr. Zivadinov took the unusual step of issuing a news release yesterday of sketching out results of the first phase of his more rigorous study into CCSVI.
His team conducted ultrasound scans of neck veins on 280 MS patients, 161 healthy people and about 60 with other neurological conditions.
When subjects with borderline findings were included, it turned out that 56% of MS patients and 22% of healthy comparisons had the vein problem. When the borderlines were excluded, 62.5% of multiple sclerosis sufferers and 26% of healthy people tested positive for the condition.
The fact that so many more MS patients had the condition is a significant finding, said Dr. Zivadinov. He also noted, however, that the vein narrowing was more common in people at more advanced stages of the disease.
"That would be against CCSVI being a primary cause of MS, although clearly this can't be determined yet," said Dr. Zivadinov. "This will be very difficult to determine: what is the chicken and what is the egg."
Luanne Metz, an Edmontonbased MS specialist, said the results suggest the vein narrowing could be a risk factor for the disease, but not its cause.
"What it really does is it really warns that people need to be cautious," the neurologist said.
Dr. Paul O'Connor, a neurologist at Toronto's St. Michael's Hospital, said he would advise against patients even getting tested.
"There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients," he said. "If there is no treatment for this condition, there is no need to detect it."
Both he and Dr. Freedman also suggested that Dr. Ziadinov may be in a conflict of interest, given that his Buffalo Neuroimaging Analysis Center is now offering neck scans to MS patients for fees of $4,500 to $6,000.
Dr. Ziadinov said he and his colleagues debated the ethics of providing the service for a fee, but decided they had an ethical obligation to do so, partly because 15,000 MS patients had approached them to be part of clinical trials that have spots for just 500. The proceeds will fund the research, he added.
Interesting how the same set of stats can be interpreted so differently. While I remain hopeful, I thought this article raised some valid questions I ha not yet seen raised in any of the media coverage thus far.
It sounds as though those on each side of the question are making statements in more definitive terms than can truly be justified. The guy from Toronto says that people shoudn't be tested for this problem because there's no treatment for it. If we followed that logic, why would we ever test anyone for anything? We surely wouldn't have treatments available for things we've never determined are a problem, would we?
It would seem to me, at least on the surface, that these new numbers confirm that there is some connection, but they don't define just what that connection is. There are also some good questions being asked, but to say that "the whole notion of cause and effect is out the window" seems like the doctor likes to paint with a very broad brush.
It is interesting how the same numbers can be spun in completely different ways. I'm with Pastor Dan that a lot of people seem to be willing to speak about more than they can possibly know.
Although there are a lot of people taking a thoughtful and open-minded approach to CCSVI and MS and there are researchers who have stepped up to try to substantiate and validate the claims, there is also a lot of polarized, tunnel visioned, hysterical, propagandistic talk out there from both extremes.
You can see this on the patient side with people who think this is all settled and proven, everybody should just go out and get this treatment, that there are no dangers or risks involved, that testing for CCSVI is diagnostic for MS, that everyone going to be "cured" and normal after this procedure, etc., etc. It is a good deal more complicated and uncertain than that.
Then again, since I went and had my veins angioplastied and was prepared to have them stented, it's hard for me to say that other people shouldn't have that opportunity and given that insurance consider vein blockages over a certain percentage to be a medical condition in and of itself, it's not clear to me that the testing and treatment has to be tied to a firm link to MS. For many people with MS, time is not on our side and the possible benefits may outweigh the risks.
Unfortunately, there are also many, particularly in the neurologist community, who seem to have had a hostile, knee jerk closed-minded reaction to this theory. Not only are they actively hostile to the idea of CCSVI, but they think it's not even worth researching.
There are a lot of political angles to this and, even though it's not been proven true, a lot of neuros are psychologically (and some of them financially) invested in the autoimmune origin theory of MS. Dr. Freedman, quoted in this article, is a major player in work on immune ablation and autologous stem cell transplants (ASCT) for MS, which is square in the autoimmune camp (and perhaps a bit of a glass house for someone throwing stones at the dangers of angioplasty). Stanford may not be able to have a clinical trial for CCSVI treatment because of internal opposition from the neuro dept.
See the article "The science and politics of CCSVI and Multiple Sclerosis" at
for another perspective.
The Wheelchair Kamikaze has a nice post on how the CCSVI movement has been an example of patient power: http://www.wheelchairkamikaze.com/2010/02/ccsvi-already-success.html
He points out that "The palpable excitement about CCSVI in the patient population speaks volumes to the incredible frustration patients instinctively feel about the current state of MS care, and the desperate need for hope among MS patients."
He also notes that the standard DMDs "all treat MS by suppressing or modulating the immune system. The fact is that an immune system gone awry is a symptom of MS, a disease whose origin remains unknown."
As far at the cause and effect issue, I think it is far less settled than some of those quoted in the article make it out to be. It's unclear what causes the vascular abnormalities in CCSVI and it's still unclear how, or if, they're related to MS. Many of these abnormalities apparently appear similar to congenital venous abnormalities in other parts of the body, but not all of them. Some of them are caused by malformed or malfunctioning valves. Some people are completely missing one of their jugular veins, which is hardly likely to be caused by MS. Some of them appear to be types that could be acquired, e.g., caused by compression.
Dr. Dake at Stanford found a variety of types of venous malformations.
"Lesion etiology is non-specific (congenital/hereditary, osseous impingement, arterial compression, post-inflammatory, arachnoid granulation, etc., alone or in combination." (http://www.thisisms.com/ftopicp-92722.html)
I can see the potential conflict of interest with Buffalo offering the testing, but on the other hand, there is a huge demand and a lack of places equipped to do the tests. A number of people who have paid to have testing done and gotten negative results are then left wondering whether it's a true negative or just that the testing wasn't performed or read properly. Of course, that's a strong argument for more research to try to validate and systematize the testing process.
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