Breakthrough in Treating MS

When Paulo Zamboni’s wife came down with MS (multiple sclerosis), he was in an unusual position: He was a professor of medicine. Not only did he have technical expertise, he was going to care far more than than most MS researchers about finding a cure. (Likewise, when I suffered from early awakening, I had both technical expertise and cared more about finding a solution than any sleep researcher.)

Using ultrasound to examine the vessels leading in and out of the brain, Dr. Zamboni made a startling find: In more than 90 per cent of people with multiple sclerosis, including his spouse, the veins draining blood from the brain were malformed or blocked. In people without MS, they were not. [emphasis added] . . . More striking still was that, when Dr. Zamboni performed a simple operation to unclog veins and get blood flowing normally again, many of the symptoms of MS disappeared. . . . His wife, who had the surgery three years ago, has not had an attack since. . .
The initial studies done in Italy were small but the outcomes were dramatic. In a group of 65 patients with relapsing-remitting MS (the most common form) who underwent surgery, the number of active lesions in the brain fell sharply, to 12 per cent from 50 per cent; in the two years after surgery, 73 per cent of patients had no symptoms.

Clearly Dr. Zamboni has discovered something very important. Perhaps no true health breakthrough would be complete without appalling responses from powerful people within the biomedical establishment. The American MS society issued a comment on these findings that the rest of us can marvel at. According to them, people with MS should not get tested for malformed or blocked veins!

Q: I have MS. Should I be tested for signs of CCSVI?
A: No, unless you are involved in a research study exploring this phenomenon, since at this time there is no proven therapy to resolve any abnormalities that might be observed, and it is still not clear whether relieving venous obstructions would be beneficial.

Persons with MS cannot be trusted with the dangerous knowledge of whether or not their veins are malformed or blocked! The Chairman of the Board of the National MS society is Thomas R. Kuhn. The President is Joyce M. Nelson. I would love to know how they justify this position. I wrote to the National MS society asking how Kuhn justifies this. The Canadian MS society is far less negative, perhaps due to public pressure.

Over at This Is MS, the National MS position is derided. Someone has made the shrewd observation that if there is something to Zamboni’s idea, persons with MS should get a red head after exercise more often than persons without MS and is collecting data to see if this is true. There seems to be something to it.

Not only is this a wonderful discovery but it is wonderful how the National MS Society can simply be ignored. There are now much better sources of information.

Thanks to Anne Weiss, Charles Richardson, and James Andwartha.

11 Replies to “Breakthrough in Treating MS”

  1. Are you sure you “cared far more about finding a solution than any sleep researcher”? I imagine that many sleep researchers have sleep problems or have close friends or relatives who do. That might motivate some people to go into sleep research in the first plac.

  2. Andrew, yeah, that’s a good question. Judging by everything I’ve read, I cared more than any sleep researcher. No expressions of concern about this. As you say at least a few of them had/have the same problem. Why no expressions of concern? Why no research program? Well, early awakening isn’t life-threatening. Other sleep disorders are much worse. Maybe because to study early awakening would get in the way of more conventional research that would be more palatable to funding agencies and their colleagues — but I don’t know. Aside from trying to read people’s minds, I did experiments about the problem for 20 years. Nobody else has done experiments about it for one year. But you also have a good point and I’ve removed the “far” from “far more”. The difference in motivation (between the person with the problem and the average researcher) is really important but I hope I can find a better way to put it.

  3. The actions of the American MS society remind me of the American Heart Associations belief in the lipid hypothesis (and statin drugs), and the American Diabetes Association’s support for low-fat high carb diets. I’m not sure these big organizations have justified their existences.

  4. I’d suggest it’s reasonable to wait for replication of these results before getting MS patients all worried and clamoring for vein surgery. I have ALS and last year there were encouraging reports (also out of Italy) that lithium had been very effective against that disease. Should the ALS Association have told everybody to rush to their doctors and get lithium? A larger trial was started to replicate the results and was recently stopped midway due to ineffectiveness. Lithium did nothing for ALS in that study.

    There are reasons why science does not turn on a dime and change all its recommendations based on the latest result by one scientist. Too many of these reports turn out to be inaccurate or at least incomplete.

    I hope very, very strongly that this treatment turns out to be as valuable as claimed and brings great relief to patients with MS. But we need to double check the results before performing this surgery on a large body of people.

  5. Hal, it’s the fact that the National MS Society discourages testing that I find appalling. Treatment (such as lithium) and testing are really different. And the evidence here is far stronger than the ALS case. No one found that lithium levels in ALS patients were always lower than lithium levels in non-ALS patients, which is essentially what has been found here.

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