The controversial health topic du jour is chronic cerebrospinal venous insufficiency or CCSVI as an explanation for multiple sclerosis, postulated by Dr. Paolo Zamboni. CCSVI can be described as narrowing in the veins which take blood away from the brain. This results in a backup of venous blood in the brain, perhaps leading to a buildup of toxins which may or may not include iron, ultimately culminating in multiple sclerosis. Or does it?
The traditional explanation for MS is that the body's immune system attacks nerves, destroying a necessary component for signal transmission. Myelin, as it's known, wraps around a nerve and prevents electrical signals passing down the nerve from weakening. Without it, a person trying to walk is no more able to move their leg than you are able to use a train without tracks.
Clearly, these two theories do not mesh. While there is a great deal of established research on the conventional MS disease pathway, CCSVI does not have a track record outside of a few unblinded, non randomized trials. Nevertheless, a cottage industry based on CCSVI has sprung up, with many MS patients paying out of pocket to undergo a vein widening procedure known as the "liberation treatment" in hopes of finding salvation from a debilitating and ultimately deadly condition. A great clamoring has arisen from MS patients the world over for their governments to investigate and pay for the procedure, even as Dr. Zamboni himself says it is premature to get the surgery outside of a trial.
The problem I have with the liberation procedure is it just smells like so much snake oil. Hasn't this all been done before? Remember the Q-Ray? Liquid Oxygen? The Toronto Maple Leafs? All the classic signs are there: anecdotal evidence of effectiveness, appeals to emotion, desperate people crying out for help, claims of a conspiracy among large corporations to keep the status quo. They're all the same arguments homeopathy practitioners use to justify what they do.
Let's take a look at the arguments for. Trials? Dr. Zamboni's claim of 95% of MS sufferers having narrowed veins has not been replicated in independent investigations. The real number may be as low as 40%, and that's with 20% of non-MS sufferers having narrowed veins as well. This is on top of the fact that it is difficult to define what constitutes a "narrowed" vein, and that it's not clear whether vein stenoses are cause or effect from MS.
Further, there are zero randomized, controlled trials showing clear improvement in people who are liberated. I know lots of people don't care about trials, but if you want government funding or large scale research to move in a direction, this is not only fundamental but vital. All that's been presented is a collection of tales about people who were liberated, with no measure of how many got better/worse, how much better/worse. Not to mention if anyone died from the procedure. It's happened. These stories might be good enough to make a commercial, but not good enough to convince a doctor to send his patients for the treatment. Nuh-uh..
Additionally, most of the people who receive the procedure are of the relapsing-remitting type of MS, which gets better and worse for all sorts of reasons, including pregnancy, seasonal change, getting a cold, and stress. If getting stressed affects the degree of MS disability, I'm sure that sticking a wire in someone's leg, moving it up into their internal jugular vein and jiggling it around isn't a completely MS symptom neutral procedure. Doesn't mean it's a cure though. These people on the procedure weren't off their normal MS drugs either, which makes it pretty hard to figure out which therapy was the one doing the heavy lifting.
Finally, what about the rest of MS? Does living in Canada cause narrowed veins? Because there are more in Canada than anywhere else. Do women have more narrowed veins than men? Not according to the research, but more women have MS.
I realize I must sound horribly pessimistic and negative to someone with MS, perhaps even dangerous to someone who may have been liberated with good results. If anything, the arguments for CCSVI and liberation only go to show how desperate MS patients are for a cure. But let me put it to you this way. You've aligned with an unknown, unproven, untested theory. Fine, you believe whatever you want. But if you're wrong, you've just helped waste a king's ransom in research money that would have brought us a real cure sooner.
8 comments:
For someone who is clearly advocating for evidence based theories and treatment options, you'd be wise to cite your sources. Balanced arguments based on fact are far more poignant than 7:00 am rants that omit key pieces of the story and misinterpret study findings and intentions.
Sneaky - No dr. name - tell u s what is the genesis of your auto immune theory ??????? We are waiting for evidence.
Related to drugs??
that 40% is the most remarkable correlation ever have been found... nothing like this strong relation has ever been made by neurolgical only research.
you better read a few more SCIENTIFICAL FACTS about CCSVI
"But if you're wrong, you've just helped waste a king's ransom in research money that would have brought us a real cure sooner."
... And what have you cured to date after how many years of funding research?... nothing
Dear Dr. Octopus,
I am deeply disturbed by the future of the medical community if there are med students posing as real doctors online. You can, and should be, reported immediately.
I stongly suggest, if you want to maintain any hope of remaining in the medical field, that you issue an apology immediately for your erronous and ignorant remarks, and never commit this crime again.
Believe me, once you're under investigation, your anonymous online status will make no difference. Every online post can be traced.
Signed,
Your friendly neighborhood legal counsel
I agree that you need to cite your sources, and examine other studies you have missed like Al-Omari and Sinan (2010) which found CCSVI in 84% of MS patients and 0% in healthy controls; and Simka et. al. (2010) which found CCSVI in 90% of MS patients, and his newest research, to be published shortly, found CCSVI in 97% of nearly 400 patients.
Dr. Sandy MacDonald testified in front of a Canadian Parliamentary Subcommittee that his clinic found CCSVI in 95% of the MS patients it tested.
The Buffalo study that found CCSVI in 22% of healthy controls suggests a genetic role, since that study used age-matched relatives of MS patients as control subjects.
I suggest you also familiarize yourself with the work of Dr. Hubbard, whose theory of how CCSVI plays a role in MS is slightly different than Zamboni's. It answers some of the questions you have posed about nerve function. You have indeed missed where the theories mesh.
Hubbard is also developing non-invasive tests with fMRI, measuring blood flow in and out of the cortex, and finding significant differences between MS patients and healthy controls. The Hubbard Foundation also has national IRB approval and a multi-center registry so data about patient status pre- and post-procedure will build.
It's about time MS research dollars were spent somewhere other than the unproven auto-immune theory, which has basically gotten patients nowhere. No one knows why the body attacks itself, why some people get MS and others don't. No answers, just immune-suppressant drugs that are only marginally effective (one brochure says 33% effective, and Tysabri has given 63 people a fatal brain infection). And these treatments may be bailing out a sinking boat instead of patching the hole.
So we continue to throw money toward auto-immune research just because it's been a long-held theory, not a proven one. Why shouldn't research money go elsewhere? Try a new, promising direction.
Is every new theory about MS automatically called "snake-oil" simply because things that have come before it have not borne out? Do doctors dismiss CCSVI because other out-of-the-box treatments haven't worked? I think the answer is yes. There is a lot of pessimism by the established MS field because this is so different. But the connection between blood flow and MS has a long history--most recently that of Dr. Juurlink in the late 90's and Dr. Schelling in the 80's, and others showing that MS lesions follow venous pathways. Dr. Marrie recently published a paper in Neurology about the relation of vascular cormorbidity to rapid disability in MS patients. Have you examined any of this information? Or just read a few headlines?
If you want to compare CCSVI to something in medicine, try the discovery of h.plyori's role in peptic ulcers. Drs. Marhsall and Warren were laughing stocks...and then their discovery was proven to be correct.
MS patients aren't "desperate." They are advocating for their own health, just as any sick person would do. No MS treatment has given patients the results that venoplasty has--no other treatment has turned back the time on their disease. Patients who have had symptoms for years are now getting better. RRMS doesn't work that way--if a symptom lasts for more than 12-18 months, it's permanent.
The cynical arguments of "snake-oil" and "desperation" and "coincidence" are pretty weak. Do you have anything else?
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