This Is MS Multiple Sclerosis Community: Knowledge & Support

I live here in the states and occasionally wander over to the .gov website which lists all the clinical trials both active and completed.

Given the recent buzz about ccsvi, I really expected much more in the way of research. I did a search and could only come up with one small study. I also did a broader search for "multiple sclerosis" and came up with over 6000 studies. Some of the studies were really out there too. I read one trial which looked at the effects of yoga and meditation on the disease.

Does this seem strange to anyone else but me that American interest on this seems a little thin? I mean, US medicine is supposed to be cutting edge right?

Hi Bruce...

I'm no expert by any means, but I suspect that the difference with CCSVI/ MS research is at least in part that CCSVI is *not* a drug trial.

To my mind, it's kind of like using a minimally invasive surgical procedure that is already well known and commonly used "off-label" so to speak...i.e. for a condition that it was not developed to treat.

I suppose, going down that same road, using balloon angioplasty to treat MS (or at least MS symptoms) kind of puts it in the category of an "orphan drug," or in this case an "orphan procedure."

Sorry if this isn't clear, I'm still mulling over epistemological issues re: CCSVI/MS in my (at present very tired) brain.

I've been searching the internet tonight re: these issues. I haven't come up with much but this link was kind of interesting: http://en.wikipedia.org:80/wiki/Translational_research

I haven't checked out the links from that site but plan to.

Cheers,
Hope

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Dx March 2003
Avonex

If you haven't already, check out this thread: http://www.thisisms.com/ftopict-11622.html

It may shed some light on the difficulty of designing trials for CCSVI/MS.

Cheers again Bruce,
Hope

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Dx March 2003
Avonex

I saw my neuro just the other day. He brought it up not me! We bantered back and forth, then I told him we better just agree to disagree. His main issue with going forward with it is that there are no studies done (treatment) with a control group so the medical community can rule out placebo. I Told him that we are the patients, if you want a damn study with controls then get off your butt and do one. Then I asked how are you going to treat the controls ? He said the only way is to not let the patient see the procedure performed. Go in with the cath but do not open the veins.

I had to agree. There really is no other way that I could think of. Then I told him that if he wants a study he better get to work because people are not waiting.

I think you will find the list is short in CCSVI because there is no income likely for pharma types. The long list is people looking for ways to make money. The sponsors of most research are looking at their future bottom line when they offer research dollars. Imagine if the researchers of all those potential money maker ideas didn't replicate what each is doing and instead focused and corroborated on the one outcome.

Find the cause then the cure of MS

I think all this talk about clinical trials is a tactic by the MS industry to bury CCSVI forever. How many of us have symptoms that can be objectively measured? I can no longer walk and they have never tried to quantify my fatigue, numbness, the pain in my limbs, spasticity, bladder urgency etc.

I am sure they will be happy spending decades amusing themselves with theories about methods to test these symptoms. It will keep them employed and in the meantime they can keep feeding many of us expensive drugs (they gave up on me 5 years ago).

MS symptoms [/i]are anecdotal - no two of us have exactly the same experience. Moreover, where are they going to find a control group that hasn't adjusted its behaviour based on the vascular connection? Their old-fashioned ideas of Almighty Science simply don't apply here and they should know it.

The existing MS industry - the Clinics, the Societies, the neurologists - are irrelevant to CCSVI. Let's concentrate our efforts on the vascular surgeons and IRs who are willing to help us. If we focus our efforts, I'll bet we can get treatment for everyone with CCSVI who wants it before the neuros even start their clinical trials.

Hundreds of thousands of people reporting improvement will still not satisfy Science, but hey, we'll still feel better. They can't take our 'anecdotes' away from us!

There is no funding, and doctors are not going to fund it themselves. Why should they? We need to get NMSS and other organizations on board first so that they will offer funding for clinical trials to be done.

Hi, Hope. I have been chewing over that same issue. Using approved surgical procedures for new purposes is different than using a drug off label. Before you can get a drug approved for insurance reimbursement for the new purpose, you need a scientific study. Even that may not be true, though. I need to take tegretol for neuropathic pain. It is prescribed off label (only approved for epilepsy) but my insurance co. pays for it, so that isn't the answer either.

It would seem that Dr.s could do angioplasty, an accepted procedure, for a new application (to relieve CCSVI) and it should be accepted and covered by insurance. I am not sure why this is giving everone so much trouble.

I guess Dr.s need to have approval of their hospital/cath lab to do that procedure, and if there is a real question whether it is useful for any purpose, they may not allow it.

If current imaging thechnology is adequate now to show insufficient blood drainage from the brain cavity (i.e. CCSVI) and angioplasty (i.e. the liberation procedure) it makes rather common sense to fix it.

Plus if the procedure is cnosidered medically necessary, the insurance company should pay for it.

I am having trouble seeing what the problem is.

As far as I can figure, from a hospital admin's perspective, what happened last summer and fall with Dr. Dake's procedures was as bad as it gets. Experimental use of a procedure on a vulnerable population, one patient dies (indirectly or not), one patient has very serious stent migration. So when a hospital admin hears that story, the brakes go on...

Other than that, it's been a matter of getting CCSVI on the radar of the right people (IRs).

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition