CFS/ME? MUST Read Quayman's CDC's Draft Strategic Research Plan!

Discussion in 'Fibromyalgia Main Forum' started by skeptik2, May 3, 2009.

  1. skeptik2

    skeptik2 Member

    i BEG YOU ALL to read the reports from the CDCs meeting, where the warriors for our cause fought a long and difficult battle for justice for us.

    If you do not know the history of this disease, you cannot comprehend why you have not been able to find doctors who understand your illness; why you never get the appropriate tests that would show the abnormalities you carry; and finally, why there is so much information here on Prohealth that you'll never get anyplace else. The patients of 15-20-25 years have world of knowledge stored in their heads, and we all benefit from it.

    Just a serious request, ok?

    [This Message was Edited on 05/12/2009]
  2. outofstep

    outofstep Member

    If you haven't read it yet, "Osler's Web" is an excellent resource for the history and politics of the illness, including the CDC's role. It's back in print and the author, Hillary Johnson, has a website for it:

  3. ladybugmandy

    ladybugmandy Member

    i once heard a bizarre, very old story about some nurses who travelled from nevada to mexico to see a scientist who was putting their CFS into remission with some concoction he had developed. he was charging a lot of money and later demanded sex in return for the drug. some of the nurses slept with him until he was reported and shut down.

    the history of CFS is filled with incredible stories...
  4. GKTLA

    GKTLA New Member

    Hillary Johnson's summary of that meeting was incredible. It reads like a documentary on this illness. I've been complacent much too's time to get serious about advocacy. Have most of you already written your Congressional representatives?
  5. outofstep

    outofstep Member

    wow-that's one I haven't heard before. And that's one treatment I'm definitely not interested in trying!

    yeah the history is really just unreal.
  6. outofstep

    outofstep Member has it set up so that it's really easy to mail your representatives, so I try to do it frequently. For those who don't know, from the home page click on their "grassroots action center" and then "elected officials". They have a template set up if you want to use it, so that all you have to do is write a little and hit send.
  7. skeptik2

    skeptik2 Member

    Well, I've been writing representatives for 20 years and nothing has changed.

    With the economic, healthcare, and educational problems facing us now, I fear our concerns will be minimized.

    Harry Reid used to be a strong advocate for us, but he is beleagured on all sides right now; Ted Kennedy is the healthcare advocate that is trying to help all in our country; don't know if he'd have the energy/time to devote to one illness.

    How in the world can we get Reeves fired and someone really, honestly, truly interested in solving the puzzle of ME?
    Do we have any power that way? Does the CAA?

    If this last teleconference does not accomplish something in our behalf, I am going to be truly disappointed...again.

    I still say a class-action lawsuit should be started; it will take 4 years to come to court probably, but that would be a start, at least. It may put some fear into the CDC, which may help put some brakes to their plans to "NICE" the USA, or at least slow them down.


  8. outofstep

    outofstep Member

    Skeptik-please go ahead and initiate it and many will join in!
  9. ladybugmandy

    ladybugmandy Member

    a lawsuit is a great idea.

    there was one initiated by a patient in the UK but he lost.

    i would LOVE to start one in canada....but how? (i am poor now, thanks to this disease!)
  10. 3gs

    3gs New Member

    After reading this book by Dorothy Wall I was disgusted by what the CDC has done to us and continues to do.

    It's true if we don't fight nothing is going to be done. Start a lawsuit,you want action anymore hit people in thier pocketbooks. Or find a celeb who has this and will start talking!

    She lists Prohealth site in her book. I have Post Polio and until enough of us started showing up at docs and demanding our rights we were also told its all in your head.

    Healthcare is scary. Insurance companies and drug companies need the power taken out of thier hands.

    Where can I read report?
  11. mezombie

    mezombie Member

    is the report Skeptic2 refers to.

  12. mezombie

    mezombie Member

    I'm glad you posted this.

    Perhaps you could edit your first post to refer to the thread itself so people know where to look?

    It's called CDC's DRAFT Strategic Research Plan, posted by QuayMan.
  13. outofstep

    outofstep Member

    John Anderson's post for that thread recommends this-does anyone know how we would pursue it?
  14. skeptik2

    skeptik2 Member

    Thanks, mezombie, I changed it!

    Could you all help me keep this bumped?
    I don't get on every day lately.

    Caledonia, thank you for the great information!

    Hugs to all
  15. outofstep

    outofstep Member

    I'll try this but my Congresspeople really just do not seem to care. I wish there was a way to do this via Congress, but collectively instead of each of us going through our individual reps. (That's where the class action suit sounds especially good.) Maybe if enough of us write then we could get a couple/few Congresspeople involved?
  16. QuayMan

    QuayMan Member

    The thread Skeptik2 is referring to is at:
  17. skeptik2

    skeptik2 Member

    I have tried to BUMP this 3 times; it never happens.

    Could you all help me do that? Then, we will have two posts relating to each other, ok?

    Love ya!

    p.s. BUMP
  18. simka

    simka New Member

    A lot of helpful information. Thank you.

  19. mezombie

    mezombie Member

  20. skeptik2

    skeptik2 Member

    Well, I'm bringing this up again because Debbie Anderson on FB has written a
    cover letter to the Alaska ACLU, and has sent them the file of the 8700 (yes,
    that's eight-seven hundred!) names on the petition to change the name to
    Myalgic Encephalomyelitis. She has received an answer that she must find
    an attorney who will work pro bono, with the ACLU, to file a lawsuit against
    the CDC for perpetuating the name CFS in total disregard of the symptoms
    patients have that prove they really have M.E. The intention is to get the
    medical code/diagnosis for M.E. reinstated in the U.S. For those of you who
    may not know the history of the name, the CDC held a committee meeting
    wherin they knew it was M.E., but did not want to acknowledge another
    epidemic running parallel with HIV/AIDS, so called it CFS. Three
    virologists walked out of the meeting and refused to agree to this.

    Debbie says others can use the letter and the petition to send to their state's
    ACLU branch, and request another class action lawsuit. Visit her on FB.

    Lots of research on XMRV is happening; however, the threat of a class
    action lawsuit or congressional inquiry may be important if it makes the
    government agencies change their ways regarding CFS, and if it makes
    the NIH and DHHS (Kathleen Sebelius) come out of the closet and make
    public statements about the serious nature of true CFS, which is M.E.

    I brought this back to the front page so when you see blogs and FB pages
    mentioning class action lawsuits and congressional inquiries, you'll know
    what others are talking about, ok?

    What are your thoughts about this?