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Sign on to #MEAction’s response to flawed CDC review, deadline 15th Aug 2021

Discussion in 'Advocacy Action Alerts' started by Sly Saint, Aug 13, 2021.

  1. Trish

    Trish Moderator Staff Member

    Messages:
    37,449
    Location:
    UK
    Maybe it's just a routine thing with the CDC that every x years each evidence review is updated, and if there's a change in evidence then the guidelines are updated too.

    That's a wild guess.
     
  2. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    7,961
    I also have signed to show support. To me the key point, as always, is that CBT/GET trials for ME/CFS, by design, very likely misconstrue harms from treatment as lack of perseverance by the patient; inevitable if you presume a physical illness to be a mental one. These trials are explicitly designed to not recognise harms for what they are, deteriorations in symptoms due to treatment. Only the most severe and immediate harms are going to get reported, and the majority of GET-related harms don't meet these trials' criteria for counting as harms. Maybe these treatments do help a minority of people with an ME/CFS diagnosis, but if nobody is recognising, acknowledging, or giving a damn about genuine harms from these treatments, then that really p*sses me off.
     
    Joh, Simbindi, Snowdrop and 2 others like this.
  3. Yessica

    Yessica Senior Member (Voting Rights)

    Messages:
    365
    This has been a big concern of mine that this will happen.

    I remember, I think it was about 15 years ago when pages of the then called CFS CDC guidlines became good (with I think one exception, or maybe a couple, in what was said). It was very exciting to me to read it. It described what it was for me clearly and I could share it with doctors and people and then within a very short period of time it went backwards again. :cry:

    Much to my horror. Certain people I recommended it to saw the new version and not the previous one.

    Been wondering about this too.

    It doesn't make sense to me that they're doing this. Especially when things that have needed updated on there take forever to have it happen, if it even happens with a few things (some still haven't been clarified even though they've been brought up over the years by advocates to the CDC that it needs changed ). This is scary to me.

    And don't understand why with GET and CBT again.

    Edit: Edit added, then moved below. And extra words added here.
     
    Last edited: Aug 14, 2021
    Ariel, Joh, chrisb and 5 others like this.
  4. Yessica

    Yessica Senior Member (Voting Rights)

    Messages:
    365
    Oh just remembered this was during the time when the then director of the CDC was dedicated to moving CFS forward/helping us, and they were doing a big public education campaign here. So it was very shocking to have the guidelines they changed for the better during that moment, to have them go backwards again and so soon.
     
    Last edited: Aug 14, 2021
    Ariel, Joh, SNT Gatchaman and 3 others like this.
  5. Hutan

    Hutan Moderator Staff Member

    Messages:
    17,394
    Location:
    New Zealand
    Just bumping this. Does anyone have any idea how many people have signed up to the response?
     
    Ariel, Yessica and Peter Trewhitt like this.
  6. Willow

    Willow Established Member (Voting Rights)

    Messages:
    48
    Location:
    Midwest, USA
    I've just checked the petition and saw that at this moment it has 6,779 who have signed it. I believe MEAction were aiming for 7,000 signatures. The number continues to slowly increase. I do hope as many as possible do sign on.
     
    Michelle, Ariel, Sly Saint and 5 others like this.
  7. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

    Messages:
    195
    Location:
    Atlanta, GA, USA
    To be clear, CDC is not planning to use this report. Dr Unger at CDC has said publicly that it’s useless. The point when this review started years ago was to add some good treatment recommendations to CDC’s information about ME/CFS. The expectation was that good, peer reviewed studies would have taken place before this review came out. As we all know, this didn’t happen and CDC has a useless study on its hands.

    If the study is not published and is just dumped into the trash bin, no problem! They can wait to issue guidelines after some decent work is done. The problem will be if either the group that conducted the review or CDC itself decides to publish these results in a journal read by physicians. (Researchers want their work published, even flawed work!) A well meaning physician could read it and think that CBT and GET were the best possible treatments for their ME/CFS patients. That’s what the petition is trying to stop.

    There is no danger that CDC is taking a backwards step in its recommendations, but allowing this very poor study to be published would be a terrible mistake.

    All of this could have been avoided if CDC had directed the reviewers to only consider studies in which the patients were experiencing PEM. But here we are.
     
    ahimsa, Joh, Binkie4 and 21 others like this.
  8. Yessica

    Yessica Senior Member (Voting Rights)

    Messages:
    365
  9. Willow

    Willow Established Member (Voting Rights)

    Messages:
    48
    Location:
    Midwest, USA
    Just checked and saw that as of this moment 7189 people added their names to MEAction's response to the CDC opposing their flawed evidence review. August 15 was the deadline to do so. This may not be the final tally. Thanks to all those who helped with this advocacy effort.
     
    Last edited: Aug 16, 2021
    ahimsa, Amw66, Hutan and 8 others like this.
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    7,092
    Location:
    UK
    Over 7K Sign #MEAction’s Response to Flawed CDC Review
    https://www.meaction.net/2021/08/16/over-7k-sign-meactions-response-to-flawed-cdc-review
     

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