A Day to Remember cfsac mtng "thank you"

Discussion in 'Fibromyalgia Main Forum' started by simpsons, Jun 3, 2009.

  1. simpsons

    simpsons Member

    I just thought that this needed reposting. As john Herd says This has been advocacy at its best. Nothing like this has ever happened in the history of
    > ME/CFs
    This is not over yet though. we need to pace ourselves but now is the time get those letters emails out to hammer the message home. contact your association advocacy groups for virtual lobby campaigns together we can make our voices heard

    Every letter email and person who downloads the cfsac meeting counts. (you can write cfsac videocast to cd and watch bit by bit). Their are ready written letters and campaigns you can join the call for action and let our message be loud and clear. Together we can do this and now is the time .

    On 5/29/09, Co-Cure Moderators <mods@co-cure.org> wrote:
    > A Day To Remember
    > John Herd
    > May 28th 2009
    > If Dr. Reeves were a sea captain rather than captain of the CDC's CFS
    > program, and were he following channel markers rather than what he
    > declares to be the important supposed CFS bio-markers, the man would
    > have run aground long ago.
    > Dr. Reeves has focused on allostatic stress dysfunction as the
    > causative trigger of CFS and creation of an empirical definition of
    > CFS that has not been supported by most of ME/CFS investigators. He
    > has done so while ignoring the vast amount of highly credible
    > objective evidence of other types of biology involved in the illness.
    > Today, May 28th 2009, he may have run his ship into the first two
    > rocks. The CFS Advisory Committee (CFSAC) drafted recommendations
    > proposing that Dr. Reeves be replaced as the captain of the CDC's CFS
    > program.
    > They are recommending a replacement have broader views and abilities
    > that can navigate the program forward into the various kinds of ME/CFS
    > investigation that have remained profoundly needed for two decades.
    > These are areas of investigation have under Dr. Reeves captaincy have
    > been largely ignored at the CDC for the past two decades.
    > The CFSAC also is recommending that the CDC dry dock Dr. Reeves 5 year
    > plan.
    > They propose taking advantage of input from the breadth of true
    > experts in ME/CFS investigation to draft a 5 year plan that will
    > investigate the scope of physiology involved in the illness. So too do
    > they propose revamping CDC programs for educating the medical world
    > and public about the illness and to bring improvements to other
    > aspects of the CFS program.
    > Such recommendations were set forth by others at the CFSAC as well.
    > One of the best was presented during the same day. Testimony given by
    > Fred Friedberg, President of the International Association of CFS/ME
    > voiced similar very harmonious recommendations. And he was speaking
    > on behalf of the the Association.
    > If the administration of the CDC is listening, if they believe the CDC
    > should function in partnership with the medical community rather than
    > functioning in a vacuum, and if they truly are governed by their
    > founding principles, they will act upon these recommendations.
    > The CDC's charge is to protect the health of the American public. We
    > ME/CFS patients are part of that public. The CDC is duty bound to
    > develop a CFS program that will more effectively investigate ways of
    > giving us back our health and to prevent others from experiencing what
    > we have gone through.
    > Remember today. Nothing like this has ever happened in the history of
    > ME/CFS. Never before have so many of the world's ME/CFS experts stood
    > up to harmoniously and decisively call for the kind of research we
    > need. Never before has the ME/CFS medical community so directly and
    > decisively challenged the health department's flawed agenda driven
    > programs; programs that should be driven by objective ME/CFS science.
    > We have been waiting a very long time for a day like today. This is
    > our day. And it is a day the ME/CFS clinicians and investigators who
    > spoke up today at the meeting can carry forth with pride. It was
    > advocacy at its best.
    > To all of those who made today possible I say thank you.
    > John Herd
    > ---------------------------------------------
    > Send posts to CO-CURE@listserv.nodak.edu
    > Unsubscribe at http://www.co-cure.org/unsub.htm

    The CFIDS Association of America <cfidslink@cfids.org> have this to say; ---------------------------------------------
    We've updated our Virtual Lobby Day Action Alerts to reflect the
    recommendations made at last week's meeting of the Chronic Fatigue
    Syndrome Advisory Committee (CFSAC). Check out the Association's
    Grassroots Action Center at
    http://capwiz.com/cfids/utr/1/GHIPKPCQJE/NEXKKPCQMF/3424392831/ to take action on these five alerts:

    Action 1: Contact your local media to help raise awareness about CFS.

    Action 2: Write to Secretary of Health Kathleen Sebelius and ask her to
    act on the CFSAC's CFSAC Recommendations . (Now updated to send your
    comments by e-mail.)

    Action 3: Ask President Obama, Vice President Biden and your elected
    members of Congress to strengthen CFS research.

    Action 4: Provide comments to the CDC on its 5-year research plan for
    CFS. (Visit

    Action 5: Thank Dr. Wanda Jones for making the CFSAC meeting accessible
    by videocast. (Visit
    http://capwiz.com/cfids/utr/1/GHIPKPCQJE/ACRYKPCQMH/3424392831 to access the archived video from Day 1.)

    All of these Alerts can be found at
    http://capwiz.com/cfids/utr/1/GHIPKPCQJE/CILGKPCQMI/3424392831/. Since launching our fifth annual Virtual Lobby
    Day on May 11, more than 3,000 messages have been sent through the
    Grassroots Action Center to support increased research, education and
    awareness. Even if you responded to our mid-May alerts, add your voice
    now to these new calls for action!

    More advocacy news will follow in the June edition of our free monthly
    e-newsletter, CFIDSLink. Click here
    (http://capwiz.com/cfids/utr/1/GHIPKPCQJE/GKWMKPCQMJ/3424392831) to sign up for the monthly e-mailing.

    Thank you for participating in community-based advocacy![
    [[This Message was Edited on 06/03/2009]
    [This Message was Edited on 06/03/2009]
  2. Forebearance

    Forebearance Member

    Thank you, Simpsons!

    I am planning on doing Actions 2-5. (I'm too chicken to offer myself up as a story to the local media.)

    Regarding Action #4, writing to the CDC to make a comment on their proposed 5 year plan.
    I was watching the CDC's presentation again this afternoon.

    I see that Dr. Miller of the CDC really wants constructive comments about the plan. So instead of writing and telling them how lousy I think it was, I will write and say what I want them to do.

    And I will of course include the comment that I want new leadership of the CFS program. Instead of saying all the mean things I am thinking about Dr. Reeves.

    (Dr. Reeves looks like he is getting close to retirement age, anyway. Can we send him some brochures about golf resorts?)

  3. simpsons

    simpsons Member

    thanks you made me giggle re the golf resorts. perhaps a card saying happy retirement with them. :)

    seriously i would just pinch a good line about why he needs to go from one of the ready letters or documents from the groups. so constructive criticism stating clearly that you are in favor of leadership by the scientific arena eg whittlemore peterson good old fred dr chia and back the cfsac's recommendation to deploy reeves in other area's of research outside of ME/cfs

    Peter white has been in uk press talking about ebv and how they with a health diet are just supporting patients with cbt. someone made a funny comment there too. a bit of a move from the Medically Unexplained Physical Symptoms. MUPS? what MUPS?

    peace love and goodwill

    if we are all not clear then he will say that not everyone feels the same

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