Including people in wheelchairs in MS clinical trials--a debate topic for ECTRIMS

[agate]

The 32nd Congress of ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) will be held September 14-17 of this year in London, UK. Among the many topics there will be a debate on this subject:

People in wheelchairs should be included in MS clinical trials

This burning debate will address the topical issue of whether people in wheelchairs should be included in trials for progressive MS. Two opposing views will be put forward to spark debate about the reasons why a significant portion of people with MS are excluded from clinical trials of disease-modifying [treatments].

Arguing "Yes" will be K. Schmierer (London, UK), and arguing "No" will be P. K. Coyle (Stony Brook, NY, USA).

Do the experts feel that a clinical trial would be too risky for someone whose MS is advanced enough to require a wheelchair?

Maybe more answers about this will be forthcoming in September. There may be an available abstract of the discussion.

[Sunshine]

How odd! That excludes a big segment of MS patients.

[agate]

I've heard that the results of clinical trials are misleading because the trials use mainly people who are doing pretty well. I don't recall seeing this actually acknowledged by any researchers before though.

[Sunshine]

Seems like that is a huge methodolical problem.

Kinda like teaching Kelly slater a new surfing move and then telling me that I could learn it too.

[SalpalSally]

I'm not surprised. Thai hate us. We ruin everything. LOL!

[agate]

Every time I asked the Avonex people and the Copaxone people why their drugs were listed as only for RRMS, I was told that it wasn't because those drugs didn't work for progressive forms of MS. It was because the drugs hadn't been tested for SPMS or PPMS.

I often wondered why they didn't bother to test it on people with progressive forms of MS.

It must be that they didn't want to risk doing us more harm than the MS was already doing.

But once they'd determined that the drugs worked (well, sorta kinda) on people with RRMS, they threw in the progressive MS people on the theory that it just might help us too.

I'd have felt better about taking those drugs if I felt that they'd known something about how they affected people with progressive types of MS.

[Sunshine]

I wonder if it is all one disease, and if the RMS is same as SPMS and PPMS

[agate]

They do need to settle that question, don't they?

There are those who say that what is called MS is really several different diseases, or maybe two different diseases.

One would think that those brain lesions would settle the issue. If you have brain lesions that look like MS lesions, you have MS, and everyone with RRMS, PPMS, SPMS, and RPMS seems to turn up with brain lesions eventually.

But then it turns out that there are brain lesions and then there are brain lesions. There are all different types. I'm not sure that the imaging technology is good enough yet for anyone to figure out just what types of brain lesions are responsible for which type of MS.

[Frog42]

But then it turns out that there are brain lesions and then there are brain lesions. There are all different types. I'm not sure that the imaging technology is good enough yet for anyone to figure out just what types of brain lesions are responsible for which type of MS.

They certainly have figured out how to get away with charging so much for MRIs though.

[SalpalSally]

Money hungry vultures!

[agate]

The "room vote" is reported to be 56 for, 30 against on this issue.

Only registered and activated users can see links., Click Here To Register...

[Howie]

They certainly have figured out how to get away with charging so much for MRIs though.

And for all the meds used to treat MS.

[agate]

I'm not sure why some neuros would vote against including people in wheelchairs in clinical trials. I'm not sure it's greed at work here. They might sincerely believe that those who are fairly disabled by MS just aren't up to being in a clinical trial. In other words, people in wheelchairs are excluded for their own good.

As at least one comment points out, though, wheelchairs shouldn't be the standard because some people in wheelchairs are capable of full-time jobs, and others not in wheelchairs are quite disabled.

I can't think why this exclusion exists anyway. Why not settle it between doctor and patient. As in:

Patient: I'd like to be in Clinical Trial #586790.
Neuro: Do you really think you're up to that? I'd prefer it if you didn't experiment with new drugs, given the state of your health.
Patient: Oh. Ok, Doc, whatever you say.

[Howie]

I wonder why I don't have a Neuro?

[agate]

They're the latest trend! By all means get yourself a neuro.

Get each cat a neuro too while you're at it. I once heard that cats are the neurologists' favorite animal though I'm not sure how that was meant...