How the National Multiple Sclerosis Society Harms MS Patients

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.

15 Replies to “How the National Multiple Sclerosis Society Harms MS Patients”

  1. Well said!

    Medical Science nowadays is about careers not cures. Patients need to seek cures for their own diseases, otherwise it won’t happen.

  2. The folk at the National MS Society sound like a bunch of ostriches to me. It makes no sense to not test for a possible cause merely because there’s no safe, effective treatment yet developed. If testing revealed support for the hypothesis, then the MS researchers (I’d hesitate to call them scholars) would be able to submit grants to fund work to develop treatments. But we need knowledge about the cause in order to know what to treat. They’re putting themselves in a Catch 22. Dummies!

  3. Interesting position – are they trying to not get patients’ hopes up, or save them the time and money of another test until they by whatever standard they have decide to promote it? Or protect themselves from potential liability? Science is still incredibly slow at integrating new information, worried about harming people with a new idea and reluctant to ask the question ‘how many people are harmed, or not helped, by doing nothing?”

  4. I was also interested to see that the National MS society outright “discourages” banking a cord blood stem cells. MS patients typically go into remission during pregnancy so it would be interesting if there is any medical value to the mother or conceivably the child derived from cord blood stem cells. Obviously this is all speculative, but I thought that was sort of the point of science, hypothesize, test, etc. Even so, it is one thing to stay silent on the issue, another entirely to discourage. I would certainly understand their silence on banking cord blood as there isn’t any research as of yet showing thereapeutic value of cord blood stem cells for MS patients. But unless it is harmful, discouraging banking seems like overkill at best, and if in fact beneficial applications for MS are thusly derived, disastrous to those whose interests they claim to represent.

  5. To refuse to gather evidence about a plausible cause because an acceptable (to the gatekeepers) treatment is not yet available seems to me to invert cause and effect. Surely the incentive to develop the acceptable treatment must follow from evidence that such a treatment is potentially valuable? It is utterly remarkable to me, a non-scientist, that supposed scientists can think like this.

    Of course, that’s not the first instance of twisted thinking from supposed scientists that your blog has worked over, nor will it be the last. Thanks for your efforts, Seth.

  6. Very interesting. I wonder if a less regulative FDA and less government involvement in health insurance would lead patients and doctors to be more experimental and engaged in their treatment.

    The FDA won’t let you use drugs until they’ve been tested, which means you can’t try some things out until they’ve gone through a certain process. I wonder if this process becomes a kind of ritual that blinds people to obvious reasonable experiments, particularly ones with low cost and low risk and give you a bit of information about whether there’s something good or not about the approach. I believe I’ve heard of people being prevented from making use of treatmetns banned by the FDA while the treatments are being tested. If a patient is going to die anyway, he may feel comfortable with a great risk, and so preventing him from trying something seems blind to reasonable calculations about risk.

    More private healthcare might mean people would be more aware of costs, possibly would shop around for cheaper treatments, doctors might be incentivized to experiment with cheap effective treatments to beat their competition, and also insurance companies might have a variety of different plans, so some would pay for a certain treatment and others not, and which might help to avoid monoculture and reliance on one officially sanctioned approach. Perhaps even insurance companies would be more inclined to pay for cheaper treatments than more expensive ones, and this might incentivize self experiment, because self experimentation seems to be cheaper and smaller over big expensive ones.

    This is all very speculative, of course. I’m open to counterarguments.

  7. What’s the point of testing if you’re not going to do anything about it? What difference would it make, other than wasting money? Of course they shouldn’t recommend a test if they don’t recommend acting on the results of the test. Science would only be advanced if scientists are collecting the data, and even if they are the insurance companies and the patients aren’t going to want to pay for it. What’s wrong with doing it in the context of a trial? And if Zamboni’s trial was enough, why are you arguing with their recommendation against getting tested instead of their recommendation not to have the procedure done?

    Having said that, if I had MS I provisionally think I would want the procedure (with the caveat that I’d read up on it more if I had to actually make this decision). I think medical guidelines should say “we’re not sure, make your own decision,” not “don’t do this” when they’re not sure.

  8. “What’s the point of testing if you’re not going to do anything about it?” Who says you’re not going to do anything about it? It is useful info. People can make up their own minds about what to do — and with more info, they will make better decisions. This is what the National MS Society fails to grasp.

    Mike, I think the solution is simple: Do things that empower patients. That is, the public. Give them access to diagnostic tests without requiring a doctor’s approval. Give them information about hospital efficacy. Give them more access to medical journals. Give them tools and info to help them make decisions without doctors. Help them ask their doctors tough questions, such as asking a surgeon: “how often have you done this operation?” “What were the outcomes”? “How often have there been adverse events due to anesthesia during your operations?” I am sure that the pending health care reform bill contains exactly zero things that do this.

  9. Suppose you had a friend with MS, who asked you if you thought he should get himself tested. I assume you would advise him to do so. Suppose the test comes back positive. He comes to you and asks if he should have surgery done. What would you tell him?

  10. Seth – if every patient had access to diagnostic tests without doctor approval, every Tom, Dick and Harry would decide they need an MRI for every ache and pain. Insurance companies would never go for that – that’s not the MS Society’s problem. But the MS Society actually does promote clients advocating for themselves and asking their doctors the right and relevant questions: see below.

    There is no doubt why people with MS want timely answers and to be in control of their own treatment regimen. But even if a person knew that they had impaired blood flow, I don’t know that most doctors would recommend surgery at this point in time without more testing. There is no way to confidently recommend a type of testing after one study conducted with 65 people. The NMSS has also stated that if it received a “proposal related to CCSVI that is found to be outstanding and relevant to MS, we would likely commit to fund such a study.” So we all wait…

  11. AA, you write “f every patient had access to diagnostic tests without doctor approval, every Tom, Dick and Harry would decide they need an MRI for every ache and pain.” I’m not saying they should be free. Perhaps they should cost market price. Whatever the market will bear.

    “Even if a person knew that they had impaired blood flow, I don’t know that most doctors would recommend surgery at this point in time without more testing.” Sure, that’s reasonable. But patients can decide for themselves. The testing info — which would tell them whether they have impaired blood flow — would surely improve their decision making.

    Hal, I don’t know what I would tell him. I would certainly want more info than you give in your hypothetical situation. The price of the surgery, the dangers of the surgery, the impairment caused by MS, the side-effects of the current treatment, the efficacy of the current treatment, etc. But I am sure that the probability I would recommend the surgery would go way up compared to before testing (when neither of us knew if he or she had impaired blood flow).

  12. As of today…. “The National MS Society is undertaking the funding of follow-up research in CCSVI in MS and has invited investigators to apply for grant funding that would explore this lead. These applications will undergo an accelerated review process. If this hypothesis is confirmed, it may open up new research avenues into the underlying pathology of MS and new treatment approaches to therapy.”

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