Updated: PACE - Part 3: Criteria Video

Discussion in 'Advocacy Projects and Campaigns' started by Adam pwme, May 7, 2020.

  1. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    There are several diagnostic criteria for ME which complicates research and hinders the development of safe and effective treatments. Broad criteria for ME results in misdiagnosis and incorrect treatment. Researchers need stricter criteria [1]. Misdiagnosis is common, 40% of patients diagnosed by GPs are found to have other fatigue-related conditions [2].

    The defining symptom of ME is that even minimal exertion can cause a flare in symptoms (a crash) that can last for days/weeks/months. The Oxford criteria used in the PACE trial did not require Post Exertional Malaise [3]. Some participants may have had other fatigue-related conditions [4].

    When studies using the PACE criteria were excluded from a US health agency review the
    positive effects of behavioural treatments virtually disappeared [5]. The results of the PACE trial cannot be applied to the ME patient population because the diagnostic criteria are not representative. Patient survey evidence directly contradicts the results of the PACE trial [6]. Multiple surveys have consistently shown that Graded Exercise makes over 50% of patients worse [7].

    The Agency for Healthcare Research and Quality (AHRQ) and The National Institute of Health (NIH) recommend the criteria used in the PACE trial should be retired [5,8]. The NIH stated that the criteria could "impair progress" and "cause harm" [8].

    [1] https://tidsskriftet.no/en/2015/10/what-exactly-myalgic-encephalomyelitis
    [2] https://www.ncbi.nlm.nih.gov/pubmed/21132135/
    [3] https://emerge.org.au/pem-get-primer/
    [4] https://www.actionforme.org.uk/uploads/images/2018/12/IAFME-recognition-research-respect-041218.pdf
    [5] https://effectivehealthcare.ahrq.gov/sites/default/files/pdf/chronic-fatigue_research.pdf
    [6] https://journals.sagepub.com/doi/full/10.1177/1359105317703787
    [7] https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full
    [8] https://prevention.nih.gov/sites/de.../programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf

    https://www.youtube.com/watch?v=PamSZIYCYSA


     
  2. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Really excellent , it's very clear. Great work! Thank you @Adam pwme :thumbup:
     
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  3. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Thanks InvisibleWoman
     
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  4. Amw66

    Amw66 Senior Member (Voting Rights)

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    Great work again @Adam pwme . Really professional.
    It takes hard work and talent to make such complex issues simple to understand.
    Thank you.
     
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  5. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Thanks Amw66 :)
     
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  6. Graham

    Graham Senior Member (Voting Rights)

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    It's so hard to be concise, clear and accurate at the same time, but again you have done it! Well done!
     
  7. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Thanks Graham appreciated
     
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