A while back, near the beginning of this blog, I brought to your attention a new potential treatment for Multiple Sclerosis – a severe degenerative disease. The treatment, pioneered by an Italian doctor by the name of Zamboni (I couldn’t make this stuff up – I’m not that creative), is referred to as ‘liberation therapy’, and involves using venous angioplasty (balloons) to clear blockages.
I expressed my skepticism about this procedure at the time, saying that I generally doubted the claim, simply because there’s little connection between the circulatory and nervous systems. It seemed improbable to me, but I was happy (and encouraged others) to wait and see what the evidence says – what happens when we observe patients under controlled circumstances with adequate followup?
Well, it seems that this happens:
People with multiple sclerosis may show blocked neck veins as a result of the disease rather than as a cause, a large study published Wednesday suggests. The findings cast doubt on the theory that blocked or narrowed veins are a main cause of MS, study author Dr. Robert Zivadinov of the University of Buffalo said. The findings published in the journal Neurology were consistent with thinking that the condition — also known as chronic cerebrospinal venous insufficiency, or CCSVI — is more common in patients with multiple sclerosis but not to the degree first reported by Italian doctor Paolo Zamboni.
Please don’t mistake me – I get little pleasure from being right in this case. People close to my family have lived with MS, and I would much rather be wrong if it meant that people could undergo a simple medical procedure and achieve relief from their symptoms. However, the facts are the facts. In this case, the facts do not support the claim that blocked veins contribute to MS, and there is consequently no reason to suspect that alleviating the blockages will have any effect on MS patients.
This study is, perhaps, not the definitive ‘smoking gun’ that liberation therapy is not effective, but it certainly does cast doubt on the original hypothesis of its efficacy. One of the chief components of the scientific method’s accuracy is the ability to reproduce results in a variety of locations. If some event only occurred once, and cannot be observed by others performing the same procedures as elicited the original event, then serious doubt is cast on the original observation. It is far more likely, in a case like this, that there was some flaw in the original observation. This is a good thing – it prevents us from making decisions based on bad information.
However, sometimes we are hell-bent on making those decisions no matter what the evidence says:
The New Brunswick government says it will still help multiple sclerosis patients gain access to therapy to open narrowed neck veins, even though a new report on the procedure is raising concerns. New Brunswick Health Minister Madeleine Dube said that could be debated in the medical community for some time. “But while this is being researched and debated, those people still need support and we are committed to that,” she said Thursday.
There is nothing strictly incorrect about Minister Dube’s statement; however, she and I do seem to have a disagreement over what the word ‘support’ means. Under my definition, it means giving sick people the best care possible, guided by scientific evidence and good practice. Under her definition, it means giving patients whatever they ask for to make them feel better. While I am all for making people feel better, I do not subscribe to the philosophy that cutting people open to elicit the placebo effect constitutes responsible medical care.
For all intents and purposes, there is no reason to suspect that liberation therapy elicits anything stronger than a placebo effect. For every anecdote that states an improvement in symptoms, there is one that talks about how the symptom relief has faded over time. And among those anecdotes, there’s more from people who keep chasing the bad medicine like an addict fiending for a fix:
The monitoring is for Canadians such as Caroline McNeill of Langley, B.C., who travelled to California to have her neck veins reopened using balloon angioplasty. She has had the procedure twice before, and noted lingering benefits such as feeling less tired. “The numbness on my fingers has started to come back again, and I have really bad dizziness and vertigo,” McNeill told her doctor. She plans to return to Newport Beach in Southern California for a stent later this month.
It doesn’t surprise or confound me in the slightest that people who experience a temporary benefit would go back to the well, so to speak, and give the therapy another try. When the current regimen of therapies are only partially effective and carry a whole host of adverse effects, it’s completely reasonable to leap at any alternative. This is why these ‘alternative therapies’ (which is a really stupid name) are so dangerous – they make wild promises that offer benefits that have no scientific backing whatsoever. The people to whom these promises are made are often desperate for any relief, and will try just about anything no matter how dangerous it is.
This is why people who advocate “health freedom” make me so angry – there is no way you can expect people to be dispassionate and conscientious consumers, weighing the plusses and minuses of different options, when the stakes are so high. People’s lives and day-to-day well-being hang in the balance, and they’ll jump at any chance to feel better. This is why our policy should be based on scientific evidence, not the whims of politicians and the desperation of sick people.
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Crommunist. The study cited in your blog doesn’t “what happens when we observe patients under controlled circumstances with adequate followup”. It appears to only be looking at the correlation between vein-narrowing and MS. It did find a correlation. The author suggests vein narrowing is more likely a symptom than a cause of MS. It seems to me whether stents reverse the cause of MS or treat a symptom would not be critical if we find evidence that stents reduce other symptoms of MS.
Of course, we have to be careful about relying too much on one study. Some doctors were critical of using an ultrasound technician to diagnose vein-narrowing, suggesting venogram should be used. http://www.ctv.ca/CTVNews/Health/20110414/ms-liberation-therapy-studies-110414/ The argument that vascular surgeons and endovascular specialists should be making a diagnosis regarding veins and not neurologists seems persuasive to me.
However, the key point is it doesn’t appear that any of the patients in the study in your article received stents/venoplasty. The closest I have seen to observation and followup is http://www.ctv.ca/CTVNews/TopStories/20110410/ms-liberation-therapy-patients-110411/ where 3 or 5 patients treated in Canada showed dramatic improvement. While this is not conclusive given the low sample size and lack of experimental design, a year does seem like a long time for a placebo effect.
What am I missing here?
Interestingly, it seems to me ctv is more positive about liberation therapy than other news sources. I would be curious if others found this to be the case and if there is a reason for this potential bias.
This is true, my point was more generally that when rigorous study is undertaken, doubts are cast on the efficacy of the procedure as a treatment for MS. When we rely on anecdotes and case studies as evidence, we get a skewed and unreliable view. It is not possible to draw conclusions either for or against the procedure based on these kinds of ‘evidence’. A controlled study, however, gives us a better idea of what the real story is.
I think a lot of media outlets are pro-liberation because those of us that are skeptical are less likely to get furious about it.
Also, MS is a relapsing condition – it is not unheard of for people to spontaneously improve for periods of time as long as, or longer than, a year.