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CDC responds to false SMC factsheet claim

Discussion in 'General ME/CFS News' started by Robert 1973, May 28, 2018.

  1. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    On 26 March I sent to following question to the CDC:
    2 months the later (after 3 further requests for an answer) the CDC has responded:
    Details of the Roundtable report can be found here:
    https://www.cdc.gov/me-cfs/programs/meetings.html

    I note that the SMC has now revised its “factsheet”, which now reads:
    Unfortunately, the SMC makes no mention of the change and has not issued an apology.

    The original “factsheet” is archived here:
    https://web.archive.org/web/2018032...re.org/cfsme-the-illness-and-the-controversy/

    I’ve not checked to see if any more changes have been made.
     
  2. Trish

    Trish Moderator Staff Member

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    Well done for keeping track and persevering to get a response, @Robert 1973.
     
  3. Inara

    Inara Senior Member (Voting Rights)

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    Thank you @Robert 1973, I think it is great that SMC changed its "factsheet"! Very important.
     
  4. Seven

    Seven Senior Member (Voting Rights)

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    Is all about liability legally. They will never admit wrong. If they do, they can be sued for any person that was harmed by those recommendation.
    Removing it is the right step on the right direction. Best we can ever hope for.
     
    Saffron, rvallee, EzzieD and 16 others like this.
  5. Webdog

    Webdog Senior Member (Voting Rights)

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  6. Esther12

    Esther12 Senior Member (Voting Rights)

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    The SMC factsheet now says: "Updated 03/05/2018"

    It looks like they were contacted by the CDC?

    What a surprise.
     
  7. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Yes, I may seek clarification from the CDC, now that I have the direct email address for its “CFS program”.
     
    Last edited: May 28, 2018
  8. Esther12

    Esther12 Senior Member (Voting Rights)

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    You could even request a copy of any correspondence with the SMC?
     
  9. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Thanks @Robert 1973 .....we keep chipping at that mountain and we will get through
     
  10. JemPD

    JemPD Senior Member (Voting Rights)

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  11. Medfeb

    Medfeb Senior Member (Voting Rights)

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    @Robert 1973 - just an FYI in case its useful to you

    CDC updated its website on May 18 and added a section on managing PEM. Some of the text is better but the statements about exercise could suggest the only problem is with vigorous aerobic exercise and that increasing exercise is needed to maintain fitness and avoid deconditioning. https://www.cdc.gov/me-cfs/treatment/index.html
     
  12. Webdog

    Webdog Senior Member (Voting Rights)

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    As much as I'd like to criticize my healthcare provider for their current treatment recommendation of exercise + antidepressants + supportive therapy, they really aren't in disagreement with the CDC.
    • Exercise: "Patients who have learned to listen to their bodies might benefit from carefully increasing exercise to improve fitness and avoid deconditioning."
    • Antidepressants: "Some people with ME/CFS might benefit from antidepressants and anti-anxiety medications."
    • Supportive Therapy: "Professional counseling: Talking with a therapist to help find strategies to cope with the illness and its impact on daily life and relationships."
    Two steps forward, one step back. Progress is never easy, is it?.

    I suspect the May 18, 2018 CDC content revisions we are seeing will also appear in some form in the new "Information for Healthcare Providers" scheduled for release this summer. I hope I'm wrong.

    Apologies for being off topic.
     
    Joh, Inara, Luther Blissett and 13 others like this.
  13. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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  14. Esther12

    Esther12 Senior Member (Voting Rights)

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    That the only change they made was to the CDC sentence, when the Forward ME letter referred to far more than just that, makes me think it might be the CDC instead. Who knows though. I suspect that the SMC will not be keen to be transparent on this.
     
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  15. Forbin

    Forbin Senior Member (Voting Rights)

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    Excellent work @Robert 1973!

    I seem to recall that the SMC has ambitions of establishing itself in other countries, including the United States. If so, asserting that the CDC makes recommendations based on patient pressure rather than on medical evidence is a superb way to make friends and influence people in the Department of Health and Human Services. Keep it up SMC! :thumbup:
     
    Last edited: Jun 19, 2018
  16. Sean

    Sean Senior Member (Voting Rights)

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    Definitely a step in the right direction, whatever the reasons and however reluctantly they are taking it. But only a step.

    The first part of that statement is actually quite good. It goes against what the PACE crowd are saying about patients paying too much attention to their bodies.

    But the second part raises the question: where is the evidence for deconditioning (of a pattern and level that explains physical symptoms)?

    I still think that one of the most remarkable things about ME, and one of its most important (and ignored) clues, is that patients are not more deconditioned than they actually are.
     
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  17. Webdog

    Webdog Senior Member (Voting Rights)

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    Agreed.

    I would think “Patients who have learned to listen to their bodies” should be, by definition, already exercising at an appropriate level.

    There isn’t evidence of patients are deconditioned beyond their physical limitations.

    “Rehabilitation specialists or exercise physiologists who know ME/CFS may help patients with adjusting to life with ME/CFS. ” — if the CDC believes patients have access to exercise specialists “who know ME/CFS”, they must live in another planet.
     
    Last edited: May 29, 2018
  18. FreeSarah

    FreeSarah Senior Member (Voting Rights)

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    They actually published that? Good grief, it's like dealing with Orwell's Ministry of Truth
     
  19. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    That'll be my new nickname from them.
     
  20. Alvin

    Alvin Senior Member (Voting Rights)

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    I think we can develop an entire lexicon, from calling PACE the Schrodinger trial to multiple alternative facts, plenty of doublethink, it just boggles the mind.
     

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