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Good News From The NIH..Patient Advocate for NIH State of Knowledge Workshop

Discussion in 'General ME/CFS News' started by shannah, Dec 30, 2010.

  1. Dolphin

    Dolphin Senior Member

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  2. Cort

    Cort Phoenix Rising Founder

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    Phoenix Rising's Nominations

    Phoenix Rising's Nominations:


    • Cort Johnson - the founder of Phoenix Rising and a CFS patient, Cort Johnson has displayed his interest and knowledge in CFS through dozens of overviews and blogs on research topics over the past seven years . As a frequent blogger and the owner of the Phoenix Rising Forums he is well placed to communicate with the ME/CFS community. He was recommended to the committee by Dr, Dharam Ablashi, co-discoverer of HHV-6 and the research director of the HHV-6 Foundation, and Dr. Nancy Klimas.
      [*]Adin Burroughs - as a Senior Systems Engineer for Scientific Research Corporation and Program Manager for Northrop Grumman from 2002-2005, Adin Burroughs has demonstrated skill at working in managing a team environment. Adin was on the Conference Committee and the Conference Planning & Review Committee (intermittently from 99-03, in charge of reviewing & selecting technical papers, speakers, and awards for outstanding papers at all SISO Conferences. He was responsible for developing a coherent plan of activities at each Workshop and soliciting papers, presentations, demonstrations, panel discussions, and other appropriate activities in support of the Conference objectives. When Adin became ill with CFS he turned his considerable intellectual capabilities towards understanding the disorder. He would bring skill in conference management plus an understanding of ME/CFS research to the NIH Steering Committee.
    • Leonard Jason - Leonard Jason is a researcher with CFS who has made a profound impact on the epidemiology and understanding of chronic fatigue syndrome. As a well respected figure in the ME/CFS Community and CFSAC Committee member, he would be ideally placed to speak to both the research and patient community.
    • Bob Miller - A passionate and yet sober advocate for ME/CFS Bob Miller commands the respect of the ME/CFS community. Bob’s ability to objectively weigh the evidence and be assertive without being judgmental would make him an excellent steering committee member.
    • Marly Silverman - Marly Silverman has displayed both assertiveness and a deep knowledge of ME/CFS research in her efforts to create ME/CFS Treatment Centers in N. Jersey and Florida. The leader of Pandora, Marly has proved adept at creating valuable partnerships at both the physician and community level and she would be an excellent candidate to assist the Steering Committee in prioritizing research and communicating with the ME/CFS Community.
    • Pat Fero - The President of the WCFSA, Pat has investigated CFS funding patterns at the NIH several times and has presented that information before the CFSAC Committee. A mother of a child diagnosed with CFS who passed away and someone with CFS she brings a strong commitment for movement in the CFS research field to the Steering Committee.
    • Mary Schweitzer - Mary brings the perspective of both a researcher and a patient to the Committee. A well-loved advocate well-grounded in ME/CFS research she would be an excellent conduit to the patient community as well as a passionate spokesman for more and better ME/CFS research.
  3. Cort

    Cort Phoenix Rising Founder

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    Poll

    A Poll would have been fine - anybody should be able to start a poll....

    He wanted the nominations by the 3rd I believe
  4. frenchtulip

    frenchtulip Senior Member

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    Excellent nominees!
  5. lancelot

    lancelot Senior Member

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    This shows the NIH and Dr Mangan really care about us! This is something the CDC should have done decades ago.

    NIH > CDC
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    3rd of what? Jan/Feb/March?...
  7. gracenote

    gracenote All shall be well . . .

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    Yesterday.
  8. Cort

    Cort Phoenix Rising Founder

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    I'm afraid so...in hindsight a poll would have been perfect.....one of those in hindsight things. we probably would have had to do two polls with all the nominee's; It would have been interesting....Next time! I do think Mangan will do this again in other areas.
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Oops! Oh well?!?
  10. Tia

    Tia Senior Member

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    Cort, I'm SO happy for you! If there's someone who should be in on this, it's YOU. I hope you have the energy for this. <3
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I hope this is a joke! but something tells me it's not. To me this is like saying "my boyfriend really loves me because he has stopped beating me pursuant to the restraining order." (this is NOT meant to be offensive, just to reflect my feelings)

    Let me guess, they'll pick someone nominated by CAA who will cover for NIH's and CDC's mistreatment of us.

    That said, i am very happy that NIH is taking some real (albeit cost-free) steps in the right direction. I will stand up and applaud them when we get some meaningful funding for legitimate studies and NIAID director Fauci apologizes for his abuse of us over the last 25 years.
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Cort: You say you are "the owner of the Phoenix Rising Forums." Non-profits don't have owners.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Very well said, CBS!
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Dr. Y hits it on the head as usual! The patient rep has to be in their face and demand the above. No more acceptance of abuse.
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree. I think inclusion of broad patient input is important when nominating representatives.

    Cort: This is why i also respectfully disagree with your request not to email Dr. Mangan. I think individual ME patients' short emails listing their own nominees would help the process and not be overly burdensome to NIH.

    Patients have been silenced long enough, so requests for them to be silent on who they want to represent them doesn't sit well with me. To me this is like on 30 Rock when Tracey Morgan is doing community service by having a free showing of his film at a women's shelter and says "Attention ladies of the battered women's shelter: Please be quiet a man is speaking."
  16. Roy S

    Roy S former DC ME/CFS lobbyist

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    I don't know if it's been posted here yet, but Mary Schweitzer, Pat Fero, and Ken Friedman have been named to the committee and are already at work.

    I was unable to access this forum due to the add on program. Even with a different browser it's a pain in the eyes.

    BTW, on mecfsforums I named three people I would like to see on this committee. They are the three that were named. Do I win something?:D
  17. mezombie

    mezombie Senior Member

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    Dennis Mangan's first message to Listserv members:

    January 7, 2011

    To the Trans-NIH ME/CFS Research Working Group Listserv (NIH_MECFS_WG-L)

    Welcome to the WG listserv! Thank you for subscribing. This listserv (email distribution list) is intended to quickly and efficiently provide information to all subscribers with regard to the WG activities.

    The WG is hosting a State of the Knowledge Workshop on ME/CFS, April 7-8, 2011 on the NIH campus in Bethesda MD. We have assembled a Steering Committee to help the WG plan an agenda and suggest science experts to invite to this 2 day meeting. The SC will meet on an irregular basis via conference call and email.

    The Steering Committee members include: Nancy Klimas, Lenny Jason, Suzanne Vernon, Pat Fero, Mary Schweitzer, and Ken Friedman. A group of 8 NIH WG members and an AHRQ member have also volunteered to help put the meeting together. The WG will be contacting other individuals to work with the SC, so the composition of the SC will vary from week to week. The final agenda will be assembled by the WG.

    This conference is considered a Workshop (rather than a Symposium) since research investigators will be asked to discuss, deliberate and then summarize the current science related to ME/CFS.

    It is the intention of NIH to webcast this Workshop. This will be a open meeting.

    More details regarding the Workshop will be forthcoming… thanks for your interest.

    All the best, Dennis

    Dennis F. Mangan, Ph.D.
    Chair, Trans-NIH ME/CFS Research Working Group
    Senior Research Advisor
    Office of Research on Women's Health, OD
    National Institutes of Health
    6707 Democracy Blvd., Suite 400
    Bethesda, MD 20892-5484
    Tel: 301 496-9006


    MZ's note: To join the Listserv and get updates delivered to your email account, follow the directions below.

    Send an email from your preferred computer address to LISTSERV@LIST.NIH.GOV

    The text of the message should read: SUBSCRIBE NIH_MECFS_WG-L {YOUR FIRSTNAME AND LASTNAME}

    You will then receive an email and must confirm your desire to join the list. You can unsubscribe from the list at any time.

    Please note that this is an information only email list service… not an Internet discussion forum.
  18. Sean

    Sean Senior Member

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    Seems to me like a fine crew. :thumbsup:
  19. lancelot

    lancelot Senior Member

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    More good stuff coming from Dr Mangan and the NIH. They are taking ME/CFS seriously. no joke!
  20. rwinsmom528

    rwinsmom528

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    Whoever is nominated, this fact needs to be emphasized as loudly as possible. We need doctors and others to know that by pushing us to do things causes permanant damage. We need doctors and others to remind us to take it easy and not stress oursevles instead of pushing us to our deaths.

    We also need to have the mortality of this disease studied. Diseases recognized as fatal get much more attention than others. Ours is fatal, but there are not many out there who want to admit it.

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