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CFSAC charter has not been renewed. Solve, #MEAction and Occupy ME all call for action.

Discussion in 'Advocacy Action Alerts' started by Medfeb, Sep 6, 2018.

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  1. Medfeb

    Medfeb Established Member (Voting Rights)

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    Moderator note:
    This thread combines all threads on the CFSAC closure to save confusion and duplicate discussions. It includes links to information and calls for action from Solve, #MEAction and Jennie Spotila's Occupy ME blog.


    The US CFSAC operates under a charter which was up for renewal. The Secretary has decided not to renew the charter and CFSAC sunsetted as of yesterday, September 5.

    We don't have any further information on why this decision was made.
     
    Last edited by a moderator: Sep 8, 2018
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  2. Denise

    Denise Senior Member (Voting Rights)

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    Last edited by a moderator: Sep 6, 2018
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  3. Alvin

    Alvin Senior Member (Voting Rights)

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    Is this good or bad?
     
  4. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Bad in my view. No evidence it caused any harm and had its uses. I hope people will fight to get it renewed.
     
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  5. Alvin

    Alvin Senior Member (Voting Rights)

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    Then this is another one to ask Francis Collins
     
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  6. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Definitely!
     
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  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Maybe a new committee could be formed? I don't know how these things work.
    I did think when I watched one of their meetings that it had a lot of positives, and things seemed to be heading in a more positive direction (Lucinda Bateman had just joined so it was a little while back).
    Ah, I'm too slow; was just about to tag @JaimeS but she's already replied.
     
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  8. JaimeS

    JaimeS Senior Member (Voting Rights)

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    A lot of thoughts have flashed through my head on this, including this one.

    But that hopeful thought is almost 'neither here nor there'.

    Advocates have been fighting in CFSAC for literally decades. They dropped them a thank-you-for-your-service email without warning.

    It shows a breathtaking degree of disrespect. And a lack of understanding, I think, of what patients and stakeholders have sacrificed and contributed over the years. If it was dissolving, there should have been consultation and discussion of what sort of entity would replace it, with stakeholder engagement over a period of at least a few months to ensure that whatever was created next was in the best interests of patients.

    I don't want to whip anyone up, but I just find it shockingly dismissive and unprofessional.
     
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  9. JaimeS

    JaimeS Senior Member (Voting Rights)

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    I've written an article, but the way this goes is that a lot of people need to have eyes on it, first, including a few ppl who were actually on the committee. Still, I'm going to guess we'll have this out today or first thing tomorrow.
     
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  10. Medfeb

    Medfeb Established Member (Voting Rights)

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    SMCI has put out a call for those in the US to contact their congressional leaders and ask them to "create and pass legislation creating a new federal ME/CFS advisory committee and programs." For those in the US, please take a minute and send a message to your two senators and one congressional leader.

    https://solvecfs.secure.force.com/a...50f06afea0b4ec322faa1c955e5777baeec40051a18f9

    Edit: Updated link - this should work better
    https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00037
     
    Last edited: Sep 8, 2018
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  11. Roy S

    Roy S Established Member (Voting Rights)

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  12. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I do hope this will not jeopardise NIH grant awards as we in the UK have definitely benefited from them Biobank $3,000,000 of so etc?
     
  13. Sasha

    Sasha Senior Member (Voting Rights)

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    Merged thread

    Solve ME/CFS Initiative is calling on US people to call on their representatives to demand that Congress create a federal ME/CFS Advisory Committee, in the wake of the shutting down of CFSAC yesterday.

    Video message here explaining:



    Instructions here for US people to contact their rep:

    https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00037
     
    Last edited by a moderator: Sep 8, 2018
  14. JaimeS

    JaimeS Senior Member (Voting Rights)

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    As odd as it sounds, these should in no way be connected. HHS, despite also being the umbrella under which we often discuss governmental agencies in the US related to health is also its own entity. HHS the individual entity was responsible for CFSAC.
     
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  15. MeSci

    MeSci Senior Member (Voting Rights)

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    Source: Twitter

    Date: September 6, 2018

    URL:

    Good Morning,

    I'd like to personally extend my gratitude to you for serving as a member of the Chronic Fatigue Advisory Committee (CFSAC). Your input as a subject matter expert in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has proven to be invaluable to the Department of Health and Human Services (HHS). The Secretary has decided not to renew the Charter after its expiration date of September 5, 2018. As you know, CFSAC was established in 2002 and during its 16-year tenure, it advised various HHS Secretaries on issues related to ME/CFS. The Committee was sunset effective September 5, 2018, at 11:59 p.m. Although the CFSAC Charter was not renewed, HHS remains committed to advancing research and programs on ME/CFS and providing resources to help individuals who are suffering from this complex and debilitating disease.

    CDR Gustavo Ceinos, MPH
    Designated Federal Officer
     
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  16. Emily Taylor

    Emily Taylor Established Member (Voting Rights)

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    Thank you for sharing! If you have questions, feel free to ask me directly here or by e-mail at etaylor@solvecfs.org
     
  17. JaimeS

    JaimeS Senior Member (Voting Rights)

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  18. JaimeS

    JaimeS Senior Member (Voting Rights)

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  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Not knowing anything about CFSAC before I watched a video of one of their meetings, it did strike me as being a bit odd seeing people in military uniform, who I later learned were reps of the VA.
    Except, Commander Gustavo Ceinos, MPH, Senior Public Health Analyst, Office on Women’s Health,
    is/was the Designated Federal Officer for CFSAC.

    I only just found out about the connection to the office on Womens Health. Seems very odd that 'they' should choose a) a man and b) a military commander(?) And, 'they' do realise that men also get ME(?)

    I hope that something can be salvaged from this situation.
     
  20. Forbin

    Forbin Senior Member (Voting Rights)

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    I'm pretty sure that Gustavo Ceinos is a Commander in the US Public Health Service. The Public Health Service is one the seven "uniformed services of the United States," which, along with the National Oceanic and Atmospheric Administration (NOAA), is one of the two which are "non-combatant." The head of the PHS holds the rank of vice-admiral, yet has the title "Surgeon General." This has something to do with the office having been created during the US Civil War.

    The uniforms of the PHS are similar to US Naval uniforms, but there are differences on close inspection. [I believe NOAA uniforms are similar to those of the Coast Guard.]

    A PHS officer's "sleeve device," for example, features a caduceus crossed by an anchor, whereas in the Navy it's a gold star.

    The current Surgeon General, Vice-Admiral Jerome Adams.

    [​IMG] upload_2018-9-8_2-55-20.jpeg
     
    Last edited: Sep 8, 2018

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