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Invest in ME: Status of Research, Treatment and Perception of Myalgic Encephalomyelitis 2018

Discussion in 'General ME/CFS News' started by Andy, Jun 20, 2018.

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  1. Andy

    Andy Committee Member & Outreach

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    http://investinme.org/IIMER-Newslet-1806-01.shtml

    Direct link to their status document (25 page PDF document) is http://investinme.org/Documents/Fac...ception of Myalgic Encephalomyelitis 2018.pdf
     
    TiredSam, alktipping, brf and 12 others like this.
  2. Joan

    Joan Established Member (Voting Rights)

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    A very comprehensive submission indeed. It revisits the Chief Medical Officers report of 2002 and goes through each recommendation and provides a current update on that recommendation.

    It outlines unequivocally the failings of the UK establishment when it comes to people with ME. It pulls no punches and tells it like it is. Well done to Invest in ME.
     
  3. Skycloud

    Skycloud Senior Member (Voting Rights)

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    There are a few places where I might nitpick but overall I think it's very good. I very much like the focus on the wide ranging institutional failure. I think instituitional failure is one of our biggest problems in that without it all our problems would have been addressed far far better long ago. I hope attention is paid to it.
     
  4. Trish

    Trish Moderator Staff Member

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    I've only read the first page so far which focuses on the WHO definition of ME as a neurological disorder and the UK government agreement with this, then goes on to point out that most pwME don't see a neurologist, and most neurologists don't think it's a neurological condition.

    Placing us as patients firmly under the neurological specialism may seem better than psychiatry, BUT, neurology has their convenient 'Functional Neurological Disorders' dustbin to dump us in. They already do.

    We don't have enough research evidence yet to know what kind of biomedical condition ME/CFS is. Multisystem seems a more accurate description at the moment.

    Glancing through the rest of the document, the use of the CMO report to highlight what was promised, and hasn't been done and to say what should be done looks very good.
     
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  5. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    I could not agree more.

    A close second is the lack of spine from political and health care leaders to change the institutional failure / error / bias.
     
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