James Coyne “lays waste” to PACE trial in Edinburgh
Sasha summarises Professor James Coyne's recent no-holds-barred talk on the PACE trial and points you to the slides, video, audio and transcript.
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Some out there do understand that M.E. is not the same as Chronic Fatigue Syndrome.

Discussion in 'Action Alerts and Advocacy' started by drjohn, Nov 11, 2011.

  1. drjohn

    drjohn Senior Member

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    Fellow M.E. sufferers,

    You may already know that I have been especially unwell lately, probably with some viral infection that has caused raised temperature and unpleasant symptoms on top of the familiar M.E. experience. My blood pressure, which had been brought down (126/85) with the help of some medication (Ramipril 5Mg) shot back up to over 160.

    Today (11 November 2011), I saw a practice nurse, with more than 40 years experience who worked in a clinic with a revered specialist in Bristol, Dr Stuart Glover, whom we think may now be retired or semi-retired (I saw him in 1990 - 21 years ago). The chat we had, while she measured blood pressure and took blood samples, will raise the spirits of all M.E. sufferers who know that this Chronic Fatigue Syndrome construct is polluting the purity of a sample that is necessary to study if we are ever to get anywhere. CFS is impeding progress towards recovery not only for people with M.E. but other patients bundled within it.

    All the familiar problems came up: lack of funding for research; poor teaching of doctors and attraction to the field; no further explorations when test results are in the normal range, or doing other tests not on the NHS list etc. ... and no sign of any change to any of this.

    She told me one story about them running a clinic for M.E. (limited to 4 patients) on the same day of the week as orthopaedics, when about 90 people would assemble in a crowded waiting room and she said she could easily pick out the 4 M.E. sufferers. We need to bottle such clinical experience. It is heartening that some clinicians have this understanding but it is too few and far between. Things do have to change. I am determined to do everything within my ability to ensure that they do.

    Best wishes
    drjohngreensmith@mecommunitytrust .org
    Dr John Greensmith
    ME Community Trust .org
     
  2. ixchelkali

    ixchelkali Senior Member

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    Long Beach, CA
    It's awful when you get other illness and/or medical problems on top of your ME. I hope it's not prolonged and that you feel better soon.
     

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