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How the National Multiple Sclerosis Society Harms MS Patients

Posted Dec 08 2009 4:57am
I blogged earlier about how Paulo Zamboni, an Italian surgeon, discovered that almost all MS patients have impaired blood flow from the brain. Surgery to improve the blood flow usually reduced MS symptoms. A very important discovery.

At the National Multiple Sclerosis Society, in Denver, they are unconvinced. They want more studies. Yes, Zamboni’s single study shouldn’t be the final word but here is the astonishing part: They say patients shouldn’t get tested to see if they have impaired blood flow. Impaired blood flow is very rare. When an MS patient gets tested, this tests Zamboni’s theory. His theory predicts they are likely to have impaired blood flow. At the National MS Society, they are against gathering data that would help decide if Zamboni is right. And against individuals finding out if something is wrong with their blood flow. This isn’t conservative, it’s stupid. And harmful — if anyone listens to them.

I wrote them to ask about their astonishing recommendation. Here’s the answer (from Kris Graham):

Our greatest concern at this point is the risk involved with the possible treatment, and we would like to see more clinical testing done before making a recommendation to the general public.

I wrote again to say it was the recommendation against testing (not treatment) that I was asking about. I got this reply:

We are not recommending that people get tested because there is not yet a treatment that has undergone comprehensive clinical testing.  In other words, we do not encourage people to go through testing that can not – yet – lead to treatment.  If clinical trials show that treatments, such as Dr. Zamboni’s, are clinically safe and effective, we will of course change our recommendations.  Until we know from controlled trials that there is a treatment to offer, spending the money to get tested doesn’t seem very reasonable.

What nonsense. Dr. Zamboni did a clinical trial. Spending money to get tested is money spent in a way that helps every MS patient — not to mention yourself. It’s gatekeeper syndrome — they can’t fathom why a MS patient would want to gather useful health-care info without waiting for “controlled trials,” whatever those are. I wrote back to ask what “controlled trials” meant. No reply. Thank god for self-experimentation, PatientsLikeMe, and CureTogether.

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