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USA Centers for Disease Control (CDC) news (including ME/CFS Stakeholder Engagement and Communication Calls) - next event 18 Dec 2023

Discussion in 'News from organisations' started by Sasha, Oct 24, 2017.

  1. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Location:
    Aotearoa New Zealand
    A little broader than just vaccines, but —

    Walensky, Citing Botched Pandemic Response, Calls for C.D.C. Reorganization

    https://www.nytimes.com/2022/08/17/us/politics/cdc-rochelle-walensky-covid.html

     
    ahimsa, ladycatlover, Trish and 3 others like this.
  2. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,199
    A file with the slides from Dr Gluckman’s talk is now available here:
    https://www.cdc.gov/me-cfs/pdfs/SEC-Call-Gluckman-Deck-5-13-22-508.pdf

     
    Laurie P likes this.
  3. Esther12

    Esther12 Senior Member (Voting Rights)

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    4,393
    I've not read the transcript of his talk that was posted, but the slides have a troubling tone. Maybe I shouldn't comment without reading the transcript but I just wrote this out for myself.

    "SUCCESSFUL MANAGEMENT IS ACTUALLY VERY
    REWARDING FOR THE CLINICIAN"

    "Basic Tenents of Management
    • Educating patients about the disease"

    "We know a great deal about it"

    I have mixed feelings about how rewarding he finds it to educate patients on the great deal we know about CFS.

    The history of CFS summary he provided seemed to reflect a certain viewpoint.

    This is like a summary of the approach to CFS I find most unpleasant to deal with.

    With the review of the history of CFS in detail, will that include explaining the problems the surround the promotion of CBT and GET?

     
    Last edited: Aug 23, 2022
  4. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    looking at both the 'transcript' and the slides.
    points out its important to differentiate between 'chronic fatigue' and 'chronic fatigue syndrome'.......

    then when talking about the iom report:
    he also goes on to use 'chronic fatigue' for quite a while.

    his 'history' of the disease is also a bit off


    I get the impression that he is not very aware of the different severities as a lot of it sounds very trivialising and, for want of a better description, very 'mild'.
     
    cfsandmore, Sean, Laurie P and 2 others like this.
  5. Trish

    Trish Moderator Staff Member

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    51,878
    Location:
    UK
    So CBT doesn't have side effects. I beg to differ after my dreadful experience with it. And as for graded exercise - NO.
     
    Ariel, cfsandmore, Sean and 2 others like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,299
    Location:
    Canada
    I've never seen a single person mention that CBT helped with symptoms. Obviously. What a ridiculous idea. I did see a few, maybe a handful over the years and I include Long Covid, who said it helped them a bit to deal with their reality, however that's basically like punching someone in the face and giving them something for it.

    I never, ever, see anyone mention CBT other than that, and it's always very underwhelming. The obsession medicine has with this is completely out of proportion with real life.
     
    Ariel and Sean like this.
  7. BrightCandle

    BrightCandle Senior Member (Voting Rights)

    Messages:
    338
    I did 4 sessions about 4 years ago which was half of the full course. Up to the point where I found it problematic it was largely benign and unhelpful. But where it became problematic was when 2 able bodied women were telling 6 severe ME/CFS patients who were all bed bound to go out for a coffee with friends and then work upwards and do more and more, because its proven to work. This is where GET became present as the key idea within CBT, it was the insidious approach of ever increasing activity as a solution to the mental health issue. Actively harmful advice for anyone with PEM and when they wouldn't even accept this I stopped going as did the others. So I would argue CBT as I saw it was every bit as harmful as GET if you actually did what they told you to.
     
  8. RedFox

    RedFox Senior Member (Voting Rights)

    Messages:
    1,244
    Location:
    Pennsylvania
    This statement applies to 99% of the people here, but I wish doctors would be more inclusive and acknowledge that there are pwME who had serious disabilities before getting ME. I also feel that this statement is somehow BPS-tinged. Like, if the BPS ideology didn't exist, nobody would feel the need to say this. It would be better if people explicitly acknowledged the existence of BPS when making statements like this.
     
    Sid, bobbler, Simon M and 3 others like this.
  9. Milo

    Milo Senior Member (Voting Rights)

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    Says everything you need to know about that presentation.
     
    Charles B., Wyva, Trish and 1 other person like this.
  10. Hutan

    Hutan Moderator Staff Member

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    Ariel and Peter Trewhitt like this.
  11. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    cfsandmore, Sean, Laurie P and 6 others like this.
  12. Dolphin

    Dolphin Senior Member (Voting Rights)

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  13. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    1,860
  14. Wonko

    Wonko Senior Member (Voting Rights)

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    6,674
    Location:
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    For those who live in my flat, in the UK, google informs me that is 8PM, on the 6th of December, 2022. Today (local time, to me).
     
    Louie41, Lisa108, alktipping and 9 others like this.
  15. Arisoned

    Arisoned Established Member (Voting Rights)

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    65
  16. belbyr

    belbyr Established Member (Voting Rights)

    Messages:
    99
    I booked an appointment with him last week. He is 11 months out. Per the woman in his office, if my diagnosis was just POTS... Then, I could get in sooner with one of his assistants, but because I said I have POTS/CFS... I have to wait to see him.

    Once I saw all of the testing he does from blood flow, to muscle, to mito, and autoimmunity, I had to book. I highly suspect I am in the mito group. I for sure have POTS but also PEM, which some of my online POTS friends don't have.
     
  17. Arisoned

    Arisoned Established Member (Voting Rights)

    Messages:
    65
    Phone back and say PoTS
     
    Louie41, alktipping and DokaGirl like this.
  18. belbyr

    belbyr Established Member (Voting Rights)

    Messages:
    99
    If I do, then I won't get to see Systrom is what she lead me to believe... I will call in every couple weeks to check on cancelations.

    I've already seen Dr Grubb, Dr Chemali, and Dr Klimas. Everyone one of them has picked up clues and has eliminated a lot of things my illness could be.
     
  19. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    2,308
    Am I right in thinking that it's at 8pm UK time, and there is no need to register first? The zoom link is on the page already.

    edit: sorry @Wonko. I read your 8pm as 3pm. Eyes or brain? Not sure.
     
    Louie41, alktipping and DokaGirl like this.
  20. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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