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CDC ME/CFS Stakeholder Engagement and Communication (SEC) Calls

Discussion in 'General ME/CFS News' started by Andy, Feb 1, 2020.

  1. Andy

    Andy Committee Member & Outreach

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    Thought I'd start a thread for all future calls.

    Mark Your Calendars

    Thursday February 13, 2020

    3 p.m. – 4 p.m. Eastern Time

    CDC ME/CFS Stakeholder Engagement and Communication (SEC) Call

    Call number: 1-888-603-7036

    Participant Code: CDC MECFS

    Please mark your calendars for the next Centers for Disease Control and Prevention (CDC) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Stakeholder Engagement and Communication (SEC) Conference Call. The call will feature brief updates on CDC’s ME/CFS activities by Dr. Elizabeth Unger, Chief Chronic Viral Diseases Branch, followed by a live Q&A session. Dr. Jennifer McQuiston, Deputy Director of CDC’s Division of High-Consequence Pathogens and Pathology, will moderate the call. Members of CDC’s ME/CFS program and division leadership will be on the call. We look forward to your active participation.

    A transcript will be available following the call.

    Disclaimer: Although the content of calls is directed to patients, caregivers, health care professionals, and other interested parties, CDC has no control over who participates on the conference call. Therefore, please exercise discretion on sensitive content and material, as confidentiality during these calls cannot be guaranteed.

    If you would like to be notified of future calls, please send an email to MECFSSEC@cdc.gov.

    Contact for MECFS-SEC Conference Call: MECFSSEC@cdc.gov
     
  2. Milo

    Milo Senior Member (Voting Rights)

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    Sigh. I really wish the CDC was a more authoritative figure when it came to ME. And unfortunately, the so-called ‘high consequence pathogen and pathology department’ is simply a word salad that means nothing, especially when you realize that the current high consequence pathogen that is current news already has a test and the attention and funding it should get. It simply means that ME is put at the bottom of the priority list. Again.

    Sigh.
     
    Last edited: Feb 2, 2020
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  3. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Starts in just over one hour
     
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  4. Milo

    Milo Senior Member (Voting Rights)

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    I have been put on hold and i hear faint talking in the background... anybody else on the call, has it started yet?

    ah it’s starting now.
     
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  5. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    I see that these happen on a cycle. Have any of us been on these? What are they in practice? A general current and future research call with venting Qs? Who is the intended audience, specific or a salad of audiences?

    Sorry for the Q onslaught...
     
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  6. Dolphin

    Dolphin Senior Member (Voting Rights)

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    In case you don't know, information on past meetings, including speakers, transcripts and audio recordings can be found here:
    https://www.cdc.gov/me-cfs/programs/meetings.html
     
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  7. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Thank you. Honestly, I know that I won't make it through those based on my current mission: capacity ratio. Thank you again though.
     
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  8. cassava7

    cassava7 Established Member

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    A ME patient advocate was apparently shut out of the CDC call because she stood up to Dr Unger when she refused to disavow GET+CBT for ME/CFS. She still recommends these.



     
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  9. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    There is actually no way to tell whether you were deliberately shut out of a call or if they just didn’t get to your call. I’m pretty sure that all of us have been left out at one time or another. The issue of denouncing GET & CBT were brought up by at least 2 other callers and received a poor response. None of the questions were answered adequately.
     
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  10. Milo

    Milo Senior Member (Voting Rights)

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    It is such an unfortunate way to communicate with desperate patients who face tremendous unmet health care needs and as mentioned by someone in the call, such a low number of experts. Those who witnessed the early days of the outbreaks are in retirement age.

    I am also quite disappointed that the multi-site study is so very slow in generating findings and publishing papers. It is in stark contrast with the response of health officers including the CDC with the coronavirus, then Zika, then Ebola. I understand it’s not the same. But millions are affected.
     
  11. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    Disappointing.

    Objectively, can anyone find or think of an incident of a high-profile person with a position of power or influence in an official or quasi official health organisation that has stood up for the actual evidence?

    It's impressive how many high-profile examples of people of position there are who attempt to balance between 'sides', even when they're apparently attempting to distance themselves from the same bad science.

    The political nature of the 'evidence vs evidence problem' is made so obvious that it is surreal.
     
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  12. InfiniteRubix

    InfiniteRubix Senior Member (Voting Rights)

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    It also leads to the question of, what is it that they are waiting for?

    Really, objectively, can anyone think of what is it that they are waiting for?

    What is it they require to see a lack of evidence, where there is a lack of evidence, and to see that there is strong survey evidence of harm to be considered?

    I do believe there may not be a specific answer to that question and it is a function of pressure and tide.

    I am truly curious to know if anyone has answers to these questions and from my post before. It would inform strategy and tactics.
     
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  13. rvallee

    rvallee Senior Member (Voting Rights)

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    It's a weird strategy by the CDC because they are angering everyone in the process. The ME deniers dislike that they pretend to take it seriously and the patients are furious because it's all symbolic and clearly the CDC is just waiting for this to blow over, somehow, and never face accountability for their ongoing failures. Maybe swoop in once the hard work has been done and claim credit, but that's not going to work either.

    So I'm not sure what's even the point of this, there will be no recognition in hindsight for those "efforts", it's the same tired old pretending to care but not actually doing anything, the insult is different but the outcome is the same. It will not even factor in the inevitable lawsuits as a sincere effort and certainly will not stop them from happening.

    I get that it's being between a rock and a hard place but the current approach is almost more problematic for them in the long term, as they are now showing they are aware of the impact but simply can't be bothered to do anything more than pretend, which is not different from the last 3 decades.
     
  14. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    My own feeling is that Dr Unger is moving forward, but she is moving as slowly as humanly possible. I think that continued pressure from the community and from Congress are the only things that will get her to move more quickly.
     
  15. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Given eminence seems to be important in the medical field, the CDC website and some of its statements have proved useful for us in our (another) country.
     
    Last edited: Feb 14, 2020
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  16. Webdog

    Webdog Senior Member (Voting Rights)

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    The CDC website was also essential in my successful discussions with Kaiser Permanente.

    However, I made no progress when directly asking the CDC to comment on the PACE evidence for GET. They simply would not comment on PACE, period. Head in the sand pretending PACE never happened.

    The CDC first tells me everything they do is science based, then they cherry-pick which peer reviewed published science they will and won't acknowledge. Appalling.

    Off the record (anonymous inside source), I was told that some in the CDC still believe:
    • GET can be beneficial for some patients, and the CDC won't remove this treatment option for doctors who want to use it.
    • Not exercising is certain to cause health problems.
    • Should the CDC say that GET is not recommended or harmful, some patients might use that as an excuse to not exercise at all. In other words, the CDC doesn't trust patients to properly manage their level of exercise.
     
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  17. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Lots of the sympathetic clinicians the CDC uses in its study recommend some form of exercise, so in some ways it's not that surprising.
     
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  18. rvallee

    rvallee Senior Member (Voting Rights)

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    That's a ridiculous argument because none of the psych therapies, including GET, require a prescription or even the involvement of a physician in any part of the process. Which is often lost in all the nonsense about how downgrading evidence for it would be bad for some of the patients who may benefit. It could be made illegal, under pain of death, to prescribe and it still wouldn't change availability because it's literally just an exercise program, the same kind any trainer can do when outside of a true rehabilitative program, say where nerve damage has to be taken into account.

    The entire point of pushing this into medical literature has never been about access, anyone can pay for any of those therapies, they are not covered by insurance anyway, and in fact anyone can invent their own, even do them every day for the rest of their lives if they want to, it's always been about giving it undue credibility of a fake process of clinical validation. Truth is the entire clinical process is superfluous here, this kind of stuff will never require even the involvement of a physician, it's as dumb as the recent trend of prescribing going to a museum, there is no need for it, it's entirely symbolic.

    But it's not as if lack of common sense has ever been a problem when it comes to bad advice about us.
     
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  19. dave30th

    dave30th Senior Member (Voting Rights)

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    The CDC has always refused to criticize PACE. Since it is the lead public health agency in the US, its refusal to criticize a study it recommended for years is a disgrace--an abandonment of core principles of public health. I have slammed them over this failure repeatedly.
     
  20. cassava7

    cassava7 Established Member

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    Thank you for pointing this out, I had no idea. The way the tweet was worded made it appear like the caller was deliberately shut out.

    Do these clinicians specialize in ME/CFS, or do they even know about PEM and the long-term consequences of forced continuous physical activity in ME/CFS? If not, I don't understand why the CDC would value their input for a disease whose *core symptom* effectively discards any recommendation about exercise that can be applied to persons without chronic illnesses, where it is indeed beneficial, and those affected by them, where it may be beneficial to some extent.

    I'm not saying that CDC clinicians should hold back from working on ME/CFS. As many as possible should. But like any other condition they may treat, their first step should be to understand the (general mechanisms of the) disease. The core symptom, PEM, is listed in all four common diagnostic criteria (Fukuda with PEM, that is). Or is there some kind of an exception for ME/CFS? This seems surreal.

    CDC clinicians wouldn't tell a bedbound or housebound person infected with Covid19 to exercise. If you had just recovered from such an infection, they -- along with any GP, physio, personal coach/trainer -- would tell you to take it easy for a few weeks by *reducing* your pre-illness activity level.

    Are there legal reasons that would prevent them from admitting their wrongdoing? I'm thinking that it may expose them to class actions, surely the CDC doesn't want that.

    A crappier but entirely possible reason is that they're scared of damaging their reputation. Not only that of the CDC, but of every individual who has been part of the ME/CFS working group during the time that they still officially supported the PACE trial.
     
    Last edited: Feb 15, 2020
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