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New Video: NICE pause ME/CFS guideline

Discussion in 'General Advocacy Discussions' started by Adam pwme, Oct 18, 2021.

  1. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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  2. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Messages:
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    NICE paused the publication of a new ME/CFS guideline the day before it was due after pressure from Royal Colleges and NHS England [1].

    The hallmark symptom of ME/CFS is that even minimal exertion can cause a flare in symptoms and a reduction in physical capability (a crash) that can last for days, weeks or even months. The 2007 guidelines "do not fit" with patient experience and "perpetuated my misunderstanding" of ME/CFS by recommending Graded Exercise and CBT [2].

    Graded Exercise not only fails to improve function but is detrimental to the health of ME/CFS patients and should not be recommended [3]. Patient surveys consistently report that Graded Exercise makes over 50% of patients worse [4]. Some patients become significantly more disabled. The US and a number of other governments have withdrawn Graded Exercise as the treatment
    of choice for patients with ME/CFS [5].

    After an extensive 3 year review, NICE were going to drop Graded Exercise because of improved standards for evidence and concerns about harm [6]. The evidence review included the 'definitive' £5M PACE trial which was debunked after a Freedom of Information request [7,8].

    "These treatments do not work, and worse, it appears they cause considerable harm. There is clearly a number of healthcare professionals who can’t admit they’ve got it wrong and can’t cope with change." - Professor Jonathan Edwards - NICE Expert Witness [9].

    REFERENCES
    [1] https://www.meaction.net/2021/08/17/fury-as-nice-cancels-publication-of-finalised-me-cfs-guideline/
    [2] https://www.rcplondon.ac.uk/news/do-you-really-believe-me
    [3] https://workwellfoundation.org/wp-c...T-Letter-to-Health-Care-Providers-v4-30-2.pdf
    [4] https://meassociation.org.uk/2017/0...e-least-negative-reactions-02-september-2017/
    [5] https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext
    [6] https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline
    [7] https://www.centreforwelfarereform.org/news/major-breaktn-pace-trial/00296.html
    [8] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5863477/
    [9] https://www.dailymail.co.uk/health/...herapy-chronic-fatigue-patients-banished.html
     
    Last edited: Oct 18, 2021
  3. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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  4. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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  5. Fizzlou

    Fizzlou Senior Member (Voting Rights)

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    Another brilliant video. These are so much appreciated especially with all the detailed references, evidence and transcripts. Thank you :thumbsup:
     
    Sean, alktipping, Lisa108 and 12 others like this.
  6. Trish

    Trish Moderator Staff Member

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    51,871
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    UK
    Thanks Adam. Excellent as ever.
     
    Sean, alktipping, Lisa108 and 9 others like this.
  7. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Thanks @Fizzlou
     
    Sean, Hutan, MEMarge and 7 others like this.
  8. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Thanks @Trish :)
     
    Sean, Hutan, MEMarge and 4 others like this.
  9. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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  10. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Thanks Peter
     
    Sean, alktipping, Hutan and 2 others like this.
  11. Daisymay

    Daisymay Senior Member (Voting Rights)

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    Sean, Hutan, MEMarge and 4 others like this.
  12. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Thanks Daisy
     
    Sean, Hutan, MEMarge and 3 others like this.
  13. Willow

    Willow Established Member (Voting Rights)

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    Location:
    Midwest, USA
    Excellent! Excellent! Excellent!
    Thank you! :heart:
     
  14. Adam pwme

    Adam pwme Senior Member (Voting Rights)

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    Thanks willow :)
     
    Sean likes this.

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