August 2, 2010

Nocebo, placebo, kissing...we need to know more!

And so it starts. Some studies refuting Zamboni's claims: http://www.news-medical.net/news/20100802/Research-shows-no-link-among-CCSVI-and-development-of-multiple-sclerosis.aspx

Two small studies, and I'm sure those looking for a conspiracy will note that they were conducted by neurologists, but they are a start of a question around this issue.
Saskatchewan has decided for clinical trials of the venoplasty but I've noticed that guardrails are being placed around their statement as talk progresses. Still, I do hope we get some REAL evaluation of this procedure, not just anecdotal statements of hands feeling warmer or being slightly better for a while. I want longer follow-up, better testing, perhaps MRI changes.

One of the other interesting studies I read lately mentions how people with MS are more likely than those without to react negatively to placebos, to complain about side effects from sugar pills, etc.  The "Nocebo" effect, as studied in this meta analysis review. http://msj.sagepub.com/content/16/7/816.abstract

We've always known that the placebo effect has a strong impact on study results; now it seems we react more both to positive and negative stimuli.

It's enough to make one feel like a hysteric or hypochondriac.  But perhaps there is something important here that speaks to the damage our brains have undergone.  Perhaps they are "twitchier" due to the irritation MS causes.  Perhaps that's why we seem supersensitive, in good ways and bad.

It's hard to know.  But it does make me suspicious of small studies that purport to find success. And it speaks to the need for larger studies, repetition of results, before we can wave the flag of success.

Another study, mentioned to me by a dear friend, speaks of tongue stimulation to increase the ability to walk. http://www.jsonline.com/features/health/54545577.html
Interesting stuff. Myself, I prefer my tongue stimulation when shared with another. I feel this study gives me the right to explore kissing with as many people as possible (or one as often as possible) as a MS treatment. And I don't care about any placebo effect....

But hey - in all the studies that show success in MS treatment, they also talk about physical therapy and exercise regimes to rebuild muscles. And yet no one seems to look at just exercise as a treatment for MS.  Perhaps because there's no money in it?

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