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The 25% ME Group: The Crushing Physical Burden of ME

Discussion in 'ME/CFS research news' started by Eagles, Aug 15, 2018.

  1. Eagles

    Eagles Senior Member (Voting Rights)

    The 25% ME Group: The Crushing Physical Burden of ME

    by Simon Lawrence of the 25% ME Group for those with severe ME on 14/08/2018


    There is clear evidence that ME is not the same as depression or any other psychiatric disorder. In 2015, the influential USA Institute of Medicine, stressed that ME is a medical, not a psychiatric or psychological illness.(IOM 2015)

    Neuroinflammation has been found to be widespread in the brain areas of the patients with ME and is associated with the severity of their neuropsychological symptoms, (Nakatomi 2018).

    There are over 9000 articles in peer-reviewed medical journals showing frank biological pathology in ME...
    inox, Squeezy, Inara and 4 others like this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    London, UK
    This is copied via 25% from the Stonebird site run by Crowhurst and Crowhurst. The proposals being made do not fit with the clinical facts so need to be considered with caution.

    The Japanese study suggests the presence of microglial activation in certain deep structures rather more than in normals (normals have microglial activation too). But it needs repeating. It does not indicate widespread inflammation in the brain anyway.

    The authors then suggest that there may be a channelopathy producing muscle paralysis. However we know that the difficulty using muscles in ME is not due to a problem with the muscle or the nerves as far up as the spinal cord because the deep tendon reflexes are normal. The problem is a physical one but it is not at this level. It could be at the level of the Japanese findings for instance.
    inox, Manganus, Simone and 10 others like this.
  3. Trish

    Trish Moderator Staff Member

    Brain inflammation in ME is also discussed on this thread.
    Simone, Squeezy and adambeyoncelowe like this.
  4. Cinders66

    Cinders66 Senior Member (Voting Rights)

    I think there was confusion this year when some groups , even here , published that there’d been a research publication by the Japanese 2018 which was assumed to be the long awaited replication study but it wasn’t I don’t think.
    adambeyoncelowe likes this.
  5. duncan

    duncan Senior Member (Voting Rights)

    I am a little puzzled by this observation. First, the wording throws me a bit. Are you saying ME is not due to a problem with the muscles? Second, are you suggesting channelopathies always render problems with deep tendon reflexes?

    I ask because I don't think we can confidently claim either is true.

    I think keeping acquired (or even other) channelopathies on the table might be a prudent thing to do, at least for a subset of people diagnosed with ME.
    adambeyoncelowe and Inara like this.

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