ME/CFS Report to Obama

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Jan 25, 2009.

  1. mezombie

    mezombie Member

    Posted by Mary Schweitzer on Co-Cure and reposted with permission.

    Note: For general background information on the request for public input that lead to this report, see

    There are still opportunities to make your voice heard. Use the comment section at


    Just before Christmas, the Obama-Biden transition team asked the public to hold small living room "community meetings" on health care. The results were to be sent to Senator Tom Daschle, Secretary Designate of the Department of Health and Human Services (DHHS), where NIH, CDC, FDA, and public health are housed. The original deadline was December 31, 2008.

    It soon became clear that an on-the-ground meeting was impossible for most of us.

    The obvious answer was to hold a "meeting" via internet. By this point there wasn't much time to bring people together, throw out ideas, and come up with a report. Several could not be contacted in time. Others who could be contacted could not participate. Three committee members were so sick they dropped out almost as soon as they joined. One was able at the last minute to read the report and make useful revisions. It took a lot of energy at a difficult period of time, but somehow we succeeded in putting together a report and getting it into the Obama-Biden transition team by the final deadline of January 4, 2009.

    The committee included three members who asked that only their initials be used, plus Pat Fero, Steven Du Pre, Karen Campbell, Rik Carlson, Meghan Shannon, and myself.

    The report discussed the fundamental inequity in treatment of patients with a CFS diagnosis at the DHHS agencies, and made the following recommendations:

    1. The U.S. adopt the Canadian Consensus Document for diagnosing and treating ME/CFS, available online at

    2. The U.S. accept the World Health Organization's ICD-10 designation of CFS within the chapter on neurology, at G93.3, with M.E.

    3. NIH and CDC focus on biomedical research instead of psychosocial;

    4. GAO investigate NIH and CDC for the misapplication of funds; and

    5. Secretary Daschle take seriously the existing Chronic Fatigue Syndrome Advisory Council to DHHS, along with the 11 recommendations of the CFSAC from 2004 (enclosed)

    The Transition Team asked for personal stories; we were able to send eight.

    The full report, including personal stories is available in html at the Vermont CFIDS Association's website:

    There is an index to the personal stories on the left of the website.

    The report can also be found in pdf format at:
    Report alone:
    Report plus personal stories:

    The report by itself (including the appendix of 11 recommendations by the CFSAC), or the report plus the personal stories, may be referenced or downloaded (without changes) for any purpose that will help patients who share our disease.

    Pat Fero, Steven Du Pre, Karen Campbell, Rik Carlson, Meghan Shannon, Carol O., PSB, Sue C., and Mary Schweitzer
    "Ad Hoc Committee to Inform the Obama Transition Team About ME/CFS Issues"

    [This Message was Edited on 02/06/2009]
  2. Forebearance

    Forebearance Member

    How cool that they did this for all of us!

  3. kellygirl

    kellygirl Member

    And to think I didn't vote for him........that is wonderful news.
  4. simonedb

    simonedb Member

    this is so important and wonderful they did that.
    It is very eloquently written and I think makes the pertinent points quite well, now I just hope the gov pays attention.
  5. Spinetti

    Spinetti New Member

    I hope the new team takes these recommendations to heart and begins some real change.

    Thanks for posting this, mezombie!

    Take care, spinetti
  6. simpsons

    simpsons Member

    good on you. best news i've heard for ages. keep up the good work don't let them forget about you.

  7. mezombie

    mezombie Member

  8. mezombie

    mezombie Member

    I'm glad to see people are reading this. Thanks to all who replied. Together, we can!

    There will be more opportunities to have our voices heard. This report is just the start.

  9. mezombie

    mezombie Member

  10. bakeman

    bakeman New Member

    what the response will be if any. i hope something good comes out of it!
  11. SpecialK82

    SpecialK82 New Member

    thanks for posting!

    hopefully we can be enough of a squeaky wheel that we can get some goverment grease - I hope they take us seriously!
  12. Spinetti

    Spinetti New Member

  13. johnnysyaya

    johnnysyaya New Member

    What happens now that Senator Tom Daschle is gone?
  14. mezombie

    mezombie Member

    Senator Daschle may be gone, but the information collected during these neighborhood discussions isn't.

    Daschle acted in his capacity as director of the Transition Office for Health Reform. He was expected to not only become Secretary of Health and Human Services but also Director of the newly created White House Office of Health Reform.

    The Deputy Director of this WH office, Jeanne M. Lambrew, has been involved in this process from the beginning. I expect she will continue. She co-authored a book on health reform with Daschle. She may even become the new director.