Zamboni is also getting attention from neurologists and MS specialists, who remain skeptical because Zamboni’s claims run contrary to years of research and thousands of studies pointing to the current model of MS as an autoimmune disease.Novella also points out that it's possible the vein stuff is merely a symptom of the disease which could itself lead to a worsening of the other symptoms. However, the vast majority of the research (19 studies, "a pittance") comes from Zamboni's research team himself. Of the four published studies by other researchers that have tried to replicate his theory that MS sufferers have venal blockage, only one has found a significant difference between the veins of MS sufferers and non-MS sufferers.
The stories in the Globe are basically a collection of anecdotes from MS sufferers who usually "know someone" who underwent the therapy and felt a lot better after:
“I still have patches of numbness, those things won’t go away,” said Duncan Thornton, a Winnipeg resident who travelled to Poland for the surgery in March. “But I have more energy than I’ve had for 20 years. I can play with my kids, I can stand up and do dishes, I can live life like a normal parent.”or sufferers who feel that the government is keeping a promising therapy from being offered to them:
“It’s our bodies. The government should let us see for ourselves if it works,” she said at a small gathering with other MS sufferers. “They want us to wait a few years, but this illness won’t wait. We see this as a way out, the only way out."MS is, of course, a terrible disease, and all hearts go out to its sufferers. Unfortunately, there's a reason that there are people who go through four years of school and four years of training: it's because, contrary to popular belief, your average person doesn't know what's best for their body. Doctors do. Luckily, the Globe stories have done a fairly good job of keeping Big Pharma conspiracy theories off the pages, but this opinion piece (and a quick Googling) show that they are, of course, alive and well.
Unfortunately, none of these things are in any way scientific justification for the course of action Mr. Wall has steadfastly dedicated himself to: for fuck's sake, look at this quote from Mr. Wall in a July 28 story:
“I heard some stories in church,” he said from a caucus gathering in Saskatoon. “One member shared some stories of a spouse struggling with it and it really stuck with me.”Um, excuse me? You heard some stories? In church?? This is how you make important decisions about healthcare? Mr. Wall has been framing his decision in many of the terms that purveyors of quackery use: the therapy is giving people "hope," the procedure is "controversial," people "deserve answers." None of this means anything, of course, because the way to give people hope and answers when it comes to controversial therapy is to follow the scientific method. The basic proof-of-concept that underlies rigorously funded clinical trials isn't even close to being there - Zamboni's results have been replicated (in reputable scientific journals, that is) by only one other researcher and three have failed. I'll leave it to Novella to close out:
My open plea to the MS community, especially those who are going down the rabbit hole of conspiracy theories, is to keep this discussion about the scientific evidence. This is not the place for cheap conspiracy theories. I fear my plea will fall on deaf ears, but it never hurts to ask.
* OK, that title might be a little harsh, but I just woke up and it was the only mildly clever thing I could think of.
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Isn't the fact that the Saskatchewan government is funding clinical trials a good thing then? Am I misreading this? You're mad that its an untested technique, and then the Premier says he's going to fund some trials to test it, and you don't think this is good idea?
ReplyDeleteMy aunt has MS, and we've talked about this a lot before, and she really, really, really just wants to know more. If the trials fail, they will have failed in an environment where they can be conclusively failed, right? What's so terrible about that?
No, and that's exactly the sort of problematic thinking that leads to this. The technique isn't anywhere near the point where clinical trials - that is, the actual use of the technique to treat MS - are appropriate. Before clinical studies can and ought to be done, there needs to be substantial reason to believe that the theory behind the procedure is correct, which in this case there is not. Otherwise, clinical trials are at best funding an untested procedure (thereby drawing much-needed funding away from other, well-tested procedures), and at worst subjecting patients to the potential harm of unnecessary surgery.
ReplyDeleteThe problem is that the Premier is not practicing science- or evidence-based healthcare when he uses significant funds to finance treatments that have not undergone the proper scientific method at this point. If, following more good tests, there is reason to believe this procedure actually works, that is the time to finance clinical trials.
It also seems, though this is my own speculation, that Premier Wall is going for the "standing up to the experts" angle on this one - all those doctors are saying that we don't have enough data to do clinical trials, but they don't care about you. Premier Wall does, so he's ignoring prevailing medical opinion because that's what's best for you.
A good thought exercise is to imagine that your loved one is suffering from another disease which desperately needs funding - take your choice, there are many - and then consider what you'd think if an untested MS procedure were given funding over that. Obviously that's a much easier thing to do for me, who doesn't have any close relatives or friends suffering from MS, but it's still a good thing to do.