Aug 04 2010

Some Follow up on CCSVI

Earlier I wrote about two new studies that cast doubt on the concept that Multiple Sclerosis (MS) is caused by chronic venous insufficiency (CCSVI). I also speculated that if the research ultimately shows that CCSVI is a dead end, either it will fade into a footnote on medical history, or it will continue on the fringes as pseudoscience. If the comments are any indication, it seems that the latter seems more likely.

Several commenters objected to my treatment of CCSVI. None of them, I would point out, had anything substantive to say about the two studies I reviewed. These studies looked at whether or not there is a difference between subjects with MS and normal controls in terms of their cerebral venous anatomy and function, and both found no difference at all. This was a very important replication of the research of Dr. Zamboni that found a dramatic difference. When two independent researchers fail to replicate a finding like this, that seriously calls into question the original claims.

The only commenter who even referred to the two studies was montybisset who wrote:

“The 2 studies you refernce don’t have a clue or the protocol to apply the testing for CCSVI.”

I am not even sure what this means, but it sounds like knee-jerk dismissal to me.

Commenter shh92714 pulled a gambit that is likely familiar to denizens of skeptical forums and blogs – find a trivial error that does not bear on any point of the post and then use that to dismiss the substantive arguments and evidence. In this case shh92714 writes of my reporting that Dr. Zamboni is a neurosurgeon:

In fact, Dr. Zamboni is a former vascular surgeon, one who can no longer operate because of a neurological condition affecting one of his hands. Thus, he has become an academician, a professor of vascular surgery.

Care to try again?

I did get this wrong. It was reported that Dr. Zamboni is a neurosurgeon, and I accepted that without checking further. It turns out he is a vascular surgeon. But this fact has no bearing on the points I was making. First it should be noted that neurosurgeons and vascular surgeons both deal with the vasculature of the head and neck – there is often considerable overlap in the kinds of procedures they cover. There are, in fact, vascular neurosurgeons. So this is an easy mistake to make.

Also, this detail has nothing to do with my point – which was that Zamboni is not an unbiased scientist in this. His wife has MS and he found a cure for MS that involves his specialty. The fact that he cannot perform the procedure himself is irrelevant.

Montybisset’s comment is largely an irrelevant attack on neurologists and the current standard of care in MS treatment. He makes the common mistake of equating not knowing everything with knowing nothing, claiming:

1. Neurologists have no ideao the cause of M.S.
2. Neurologists are prescribing drugs for a condition they don’t know the cause of.

There are, in fact, tens of thousands of published studies on MS over decades. We have a great deal of information about the causes of different types of MS. The immune-theory of MS has been established by a mountain of evidence. But there are layers of depth to scientific knowledge, and there is definitely a deeper understanding of what triggers and drives MS that we are currently lacking. There is strong evidence that MS is a combination of genetic predisposition and environmental triggers – always a tricky combination to sort out, because there are so many potential permutations. MS is also likely not a single discrete entity but a category of diseases with a range of manifestations. So there may be many genes and many environmental triggers.

It is also possible, as I stated, that the chronic inflammation of MS causes other secondary effects which may then contribute to the clinical progression of MS. What we see with these commenters is the pitfall of black and white thinking – either we know everything, or nothing; either Zamboni is 100% correct or wrong; any slight error in my post and every point is therefore wrong, side effects from drugs mean they do harm.

Tysabri is just one of many drugs used to treat MS. It is the most powerful drug we have, and dramatically improves the course of MS. In many ways it is a wonder drug. But is also produced an unforeseen side effect – its suppression of the immune system leaves patients vulnerable to the reactivation of a dormant virus that can cause a serious brain infection. This is a rare complication, but it did stall release of Tysabri for a couple of years while the FDA went over the data. Now we use the drug with caution and monitoring, and are thinking of ways to further limit risk. But medical treatment is about risk vs benefit – and the benefits of Tysabri far outweigh the risks. Patients with MS can make informed decisions about whether or not they are willing to take the risks for the potential benefits.

Montybisset is also quick to assume that a reasonable debate about the evidence is a dirty turf war – neurologists vs vascular surgeons. Perhaps he watches too much wrestling. And further that side effects of medications, like Tysabri, mean that doctors are harming patients. He writes:

The M.S Scoiety and Big Pharma and the Neuro’s are losing control of the folks with M.S. and it’s getting ugly. They say do no harm. I can’t imagine the harm that has been done by the drugs and the Neuro’s and the MS Society.

Statements like this strike me as profoundly clueless. The MS Society? How casually he assumes that an organization that has been dedicated for years to helping people with MS will betray them – for what? Big Pharma – that’s a cheap shot. How are they even involved in this debate?

The only reasonable point hiding in there is that the neurological community is certainly invested in the notion that MS is an autoimmune disease, and it would be hard to turn that ship around. However, this is because the evidence is overwhelming, and it would take similarly overwhelming evidence to take our thinking about MS in a different direction. This is ultimately about evidence.

Also – medical practice evolves. There are many conditions for which neurologists refer patients to surgeons – to treat vertebral disc disease, vascular problems, for epilepsy surgery, implanting deep brain stimulators, removing tumors or hemorrhages, and many other conditions. We already have a cooperative relationship of combining medical and surgical treatment for a variety of neurological conditions. If MS becomes one of those conditions, so be it. We will follow the evidence.

But at this time what we have is preliminary basic research, which is now contradicted by the first serious attempts to replicate it. We also have anecdotal evidence in a disease that naturally has a highly variable course. This is simply not compelling evidence. It should not immediately reverse decades of research.

What these few commenters seem to show is that the cranks are already mobilizing – trying to divert the debate away from the actual scientific evidence, and using all the ploys and logical fallacies we have come to recognize.

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