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#MEAction: Here's what happened at the CDC's sep. 2020 ME/CFS meeting

Discussion in 'General ME/CFS News' started by Kalliope, Sep 26, 2020.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    On Wednesday, September 23 the CDC helt its ME/CFS Stakeholder Engagement and Communication (SEC) conference call ant the #MEAction community showed up to make our voices heard! Here is our initial summary of what you need to know.

    ...

    We’ve divided this summary into the following sections, so it is easy to find the information you’re most interested in:

    1. General Reminders
    2. CDC Program Overview
      1. New Initiatives
        1. Funding studies
        2. Website update
        3. Emerging Infections Program
        4. National Health Interview Survey
      2. Project Updates
        1. ME/CFS Treatment Guidelines
        2. Adult and Pediatric MCAM Study
    3. Highlights from Community Q&A
      1. Advocates press for disavowal of CBT and GET
      2. Outreach to Black doctors
      3. A long-hauler shares her story


    Full article: Here's what happened at the CDC's Sept. 2020 ME/CFS Meeting
     
    duncan, Kitty, Andy and 11 others like this.
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Here's the new segment concerning Covid-19 on the CDC's website about ME/CFS

    ME/CFS and COVID-19: What we know
    CDC is working with partners and stakeholders to better understand the long-term effects of coronavirus disease 2019 (COVID-19) and how it affects people with ME/CFS. Currently, there are limited data and information about the long-term effects of COVID-19. A recent MMWR report found that COVID-19 can result in prolonged illness, even among adults without underlying chronic medical conditions. Studies are planned to identify whether some people with delayed recovery develop an ME/CFS-like illness.

    It is especially important for people at increased risk of severe illness from COVID-19 to protect themselves from getting COVID-19. Currently, ME/CFS is not included in the list of medical conditions that increase risk of severe illness from COVID-19. However, people with ME/CFS might consider taking extra precautions to reduce their risk of getting COVID-19 by following these recommendations. We are learning more about COVID-19 every day, and as new information becomes available, CDC will continue to update our recommendations and guidance.
     
    MEMarge, Kitty, Andy and 10 others like this.
  3. alktipping

    alktipping Senior Member (Voting Rights)

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    the c d c should tell medical professionals that people with m e /cfs are at greater risk is it that hard for them to communicate this .
     
    duncan, Kitty, Alton and 2 others like this.
  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Trial by Error by David Tuller: The CDC's Stakeholder Meeting

    Given that the CDC’s seal of approval granted international legitimacy to the delusion that people’s devastating symptoms were caused by deconditioning combined with unhelpful beliefs of having an organic illness, the agency has an obligation to set the record straight on why it accepted this flawed paradigm for so long. As far as I can tell, it has never taken that necessary step.
     
    ahimsa, cfsandmore, Yessica and 13 others like this.
  5. chrisb

    chrisb Senior Member (Voting Rights)

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    Perhaps the CDC feels the need to insist that it really is a trivial illness. It would make it so much harder to justify the misappropriation of funds, false accounting and misleading of Congress that went on all those years ago, if the condition were serious.
     

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