This Is MS Multiple Sclerosis Community: Knowledge & Support

Thought you all might enjoy this:

"Ben Goldacre: Battling bad science"
http://www.ted.com/talks/ben_goldacre_b ... ience.html

I enjoyed that.

Just like oatmeal supposedly lowering cholesterol.

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Albany 2010. Brooklyn 2011
Hurry up and wait.

Great talk. Especially so because it talks about a couple of things near and dear. 1. placebo 2. small trials.

1. Placebo: you heard it from the expert. You do not need sham treatments. You do not need placebo as a control unless there is no other working treatment. You use as a control your existing treatment. How can we tell if the new one is better? Use exactly the same tests. Please note I am not talking about finding out if something works. We know it works. (We do need studies of healthy people, to see what is normal and what is not.) How much better, not better than placebo, but better than the best thing we have today, is it?

2. Small trials: there have been oodles of small negative studies on CCSVI. Very few small positive ones. Is this because it is hard to get one published? It is certainly not because any negative studies have been suppressed, large or small. Put CCSVI as a search term into PubMED.

The number of negative opinions is much much greater. But how about small studies? Is it easier to get funding for a study like that if you are a neurologist? Neurologists are the ones most seen to have negative opinions. They often insist on placebo. Why are so many small studies negative? If their size means they are statistically less definite, shouldn't there be a number closer to the same as the number of negative studies? Certainly you can't add them algebraically to get a larger study, although you can do meta-analysis. Have any small positive studies been suppressed?

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

But there is no other working treatment for CCSVI. I can't imagine how to treat an intraluminal abnormality except with a balloon or cutting device, up to and including full surgery.

We might need placebo to test the effects of CCSVI surgery on MS, but I don't think we need it to test the effects of CCSVI treatment on CCSVI syndrome. Angioplasty is commonly used elsewhere in the body to improve flow.

Some really good points about the small trials.

I think this was posted to point out what goes on with clinical trails/studies with pharmaceuticals. Just as an example, with Fosamax, which is a medication that is suppose to increase bone density, studies were stopped as soon as info came out that the new bone was being built on old bone that normally would have been absorbed by the body. This old bone is fragile and they observed that patients taking Fosamax had an increase in fractures. Exactly what the drug was suppose to prevent. Plus a serious side effect was jaw death. My mother experience this and she lost her teeth. They could not do implants as her jaw bone was now crumbling because of Fosamax.

I think you will find that most of the scientific literature is concerned with the relationship between CCSVI and "MS". Although there must be good reasons to want good outflow besides getting rid of "MS" symptoms, treatment of deep vein thrombosis is usually all that is required to justify a new CCSVI intervention. This disease/condition/problem is confirmed as real by thousands of doctors, and these placebo studies test for efficacy by measuring "MS" symptoms. You are right, it is a war over terminology. Words and symbols are very important.

In a sense, we are looking for the right symbols to denote the symptoms of an untreated vein condition. That's why I use quotes around "MS".

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience