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

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    Distinguished Community Member agate's Avatar
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    Default Including people in wheelchairs in MS clinical trials--a debate topic for ECTRIMS

    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.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member BBS1951's Avatar
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    How odd! That excludes a big segment of MS patients.

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    Distinguished Community Member agate's Avatar
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    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.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member BBS1951's Avatar
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    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.

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    Distinguished Community Member SalpalSally's Avatar
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    I'm not surprised. Thai hate us. We ruin everything. LOL!
    Love, Sally


    "The best way out is always through". Robert Frost







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    Distinguished Community Member agate's Avatar
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    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.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member BBS1951's Avatar
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    I wonder if it is all one disease, and if the RMS is same as SPMS and PPMS

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    Distinguished Community Member agate's Avatar
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    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.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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    Distinguished Community Member Frog42's Avatar
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    Quote Originally Posted by agate View Post
    This quote is hidden because you are ignoring this member. Show Quote
    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.


    Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

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    Distinguished Community Member SalpalSally's Avatar
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    Money hungry vultures!
    Love, Sally


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