The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Next CFSAC Meeting - August 18th & 19th, 2015

Discussion in 'Action Alerts and Advocacy' started by Nielk, Jul 20, 2015.

  1. Nielk

    Nielk

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    The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a public meeting on Tuesday, August 18, 2015, from 9:00 a.m. until 5:00 p.m., ET and Wednesday, August 19, 2015, from 9:00 a.m. until 5:00 p.m., ET. This will be an in-person meeting at the Hubert H. Humphrey Building, 200 Independence Avenue, S.W., Room 800, Washington, D.C. 20201. For a map and directions to the Hubert H. Humphrey building, please refer to http://www.hhs.gov/about/hhh.html.



    The agenda for this meeting is being developed and will be posted on the CFSAC website, http://www.hhs.gov/advcomcfs/ when finalized. The meeting will be live-video streamed at http://www.hhs.gov/live. Listening-only via telephone will be available on both days; call-in information will be posted on the CFSAC website prior to the meeting. Public comment may be provided in person, by telephone, or in written form.
     
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  2. Kina

    Kina

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    Thanks for the information @Nielk.
     
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  3. shannah

    shannah Senior Member

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    The spring meeting is a little late isn't it?

    Let's hope the agenda reflects all the latest developments. Not that it's really going to make much difference. As we've seen in the past, this committee can advise with all the best recommendations in the world. It doesn't mean anything is actually going to be done.
     
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  4. halcyon

    halcyon Senior Member

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    Perhaps they were waiting for the IOM and P2P reports to come out.
     
    Valentijn, Never Give Up and catly like this.
  5. lnester7

    lnester7 Seven

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    As a community what is the ONE recommendation you would do?

    I think we need a specialty. That way the money and reaserch gets followed and recieved by DRs. With the existing doctors/ specialties we are dead.
     
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  6. halcyon

    halcyon Senior Member

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    I think we need more information about etiology before a specialty can be selected.

    I think a consensus still needs to be reached on research criteria. Obviously the IOM criteria weren't intended for research (at least I hope they weren't) so we're still left with the unanswered question of what is the best criteria for use in research.
     
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  7. Sasha

    Sasha Fine, thank you

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    Jennie Spotila has posted about this meeting on her blog and says:

    She also says:

     
  8. Bob

    Bob

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    So, should we dare to hope that ME is moving to a new department?
    "Nope", Bob says to himself, "Put that thought right back in its box."
     
    Last edited: Jul 22, 2015
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  9. Sasha

    Sasha Fine, thank you

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    I wonder if this meeting should be the target of a coordinated patients’ campaign on a specific issue, such as NIH funding or a better NIH home than Women’s Health, as per Brian Vastag’s letter in the Washington Post?

    @jspotila - wondering what you think about this.
     
    panckage, jspotila and Kati like this.
  10. caledonia

    caledonia

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    I can't believe that nobody has remarked on the return of Nancy Lee as DFO, either here on on Jspot's blog. This would be the same Nancy Lee that intimidated three members of the CFSAC and threatened them with expulsion for expressing their views regarding unauthorized changes made to their recommendations sent to Sebelius. This is absolutely outrageous.

    http://phoenixrising.me/archives/17475

    http://paradigmchange.me/wp/respons...hing-right-so-you-have-no-reason-to-complain/

    Note that twelve patient organizations as well as many advocates asked for this incident to be investigated, yet HHS swept it under the rug, saying she had done nothing wrong.

    This is just another example of the corrupt and ineffectual nature of this committee. I don't think it matters how many "good" people are on the committee or what the agenda is. The committee will end up doing whatever "they" want it to do, which I'm sure will not be good for us.

    I'm open to any suggestions, but I'm thinking a protest demanding Lee's resignation would be a good starting point.
     
  11. jspotila

    jspotila Senior Member

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    I think a coordinated patients' campaign on a specific issue is a great idea, and it has been attempted in the past. Some obstacles we've faced in the past were: achieving consensus on what the specific issue should be; coordinating among all likely commenters; getting the word out to new commenters (who are extremely difficult to reach).

    There are so many shenanigans happening right now, it's hard to pick a single issue. I think CFSAC is likely to discuss recommendations in reaction to the IOM/P2P reports, but we won't know what those are in advance so it's hard to create messaging on it. NIH funding and obstacles like the lack of an Institute home are my highest priority, but that's just my personal opinion.
     
  12. Nielk

    Nielk

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    Sasha likes this.
  13. SOC

    SOC

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    This is very disappointing. IMO, Nancy Lee has gone far beyond "not much help" and well into harm. Every time I listen to the CFSAC meeting, I am appalled by how little she appears to understand about ME/CFS. Given that she's been the DFO for CFSAC for a number of years, she could have chosen to become educated and hasn't bothered. I find that utter disinterest very disturbing.

    The optimist in me wants to hope that recent developments in research and awareness (IOM, P2P) will change the relative ineffectiveness (despite the best efforts of some of the dedicated members) of the CFSAC. My pessimist doubts anything will change as long as we're in Women's Health and Nancy Lee is DFO.
     
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  14. Valentijn

    Valentijn WE ARE KINA

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    Yes, I think her biggest problem stems from coming from the Office of Women's Health. It is not a department which handles any medical disorders or medical research, outside of CFS. Generally speaking, they are involved in managing social research to see how women and/or minorities, etc, are impacted differently in the health system. As such, it seems to be entirely staffed by people who aren't very clear on what science, medicine, or biomedical research actually are.

    We need to get our disease out of their department. And hopefully Nancy Lee and the rest of them will stay in Women's Health and not try to follow us wherever we end up. They cannot be allowed to continue to house and treat CFS as a social issue.
     
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  15. A.B.

    A.B. Senior Member

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    What a bad situation. How did it even end up in that department? This was never considered a woman's disease.
     
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  16. caledonia

    caledonia

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    From Mary Dimmock's book Thirty Years of Disdain - How HHS Buried ME (linked at http://www.meadvocacy.org/resources about halfway down the page)

    CFS was originally in NIAID due to its association with Epstein Barr Virus.

    A Trans-NIH Working group lead by the Office of Women's Health was supposed to assist with that.

    More details on page 37 and 107. Everything is referenced if you want to explore further.
     
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  17. Denise

    Denise Senior Member

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    Please note
    The registration forms for those attending CFSAC have been posted today (3 August 2015). The form for US citizens.

    Non-US citizens have to fill out an additional form in order to attend. HOWEVER the deadline for submitting it was 1 August 2015 even though the forms were posted 3 August 2015 (2 days AFTER the deadline).
     
    Last edited: Aug 3, 2015
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  18. Denise

    Denise Senior Member

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    SOC, Nielk, Valentijn and 2 others like this.
  19. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Also, they seem to not every have any money, so if you suggest sum that is bigger than before even though it is a very small fraction of a realistic amount of per-year funding for the disease, they panic, like they have never heard of that amount being spent on anything before, and say it's not possible.

    Of course it's possible. Other diseases do it all the time. There is no rational reason why we shouldn't have the same access other diseases have.
     
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  20. Scarecrow

    Scarecrow Revolting Peasant

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    A question from an ignorant UKer:

    Did the misappropriation of funds meant for ME/CFS research happen after the move to Women's Health? If so, and this can only be speculated about, do you think it would have happened if ME/CFS had a proper home?
     

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