Last chance for CFS petition: Only need 75 more signatures!

Discussion in 'Fibromyalgia Main Forum' started by karynwolfe, Oct 28, 2009.

  1. karynwolfe

    karynwolfe New Member

    QuayMan originally posted this (Thank you!)

    (This was posted on another forum)

    Speak out about the Reeves definition delaying XMRV/XAND research


    I'm starting this thread, because there may be some people who haven't heard of Tom Kindlon's online petition against the Reeves (2005) empiric definition. There are about 1750 signatures on the petition, and it would be great if there were 2000+ by Thursday, the first day of the CFSAC meeting. If you haven't signed, please do. (Link to the petition is at the end of this post.)

    My fear is that Reeves is going to do XMRV testing on the patients he's been studying in Georgia using his definition. Because around 75% of those patients don't have ME/CFS, he will find a much lower percentage of people with XMRV than was found by the group at the Whittemore-Peterson Institute. Although I think WPI will ultimately prove Reeves wrong, it could cost precious time and energy and delay finding the answers about transmission and treatment that we all want and need. So I think it's very important that the CFSAC makes a strong statement against the Reeves definition--something they didn't do at their last meeting. We need to push them!

    In order to get more signatures, I've been emailing old friends, relatives, colleagues, anybody I can think of who might sign. It's actually been a good excuse to get in touch with people. This is what I've sent out, after saying hi & what's up:

    By the way, I'm emailing everyone I can think of to see if anyone is willing to sign a petition about the definition of Chronic Fatigue Syndrome (which I, along with many other people, call Myalgic Encephalomyelitis or ME/CFS). It's a pretty esoteric thing to have to have a petition about, but, unfortunately, it's important. Basically, since there's now a lot of data about infectious and other possible causes for CFS, in 2005 Dr. Reeves of the CDC decided to redefine it (CFS) so it would better fit his theory of a psychological cause. Dastardly! Anyway, there's an online petition against the definition. It's a bit of a slog to get through: there's the petition, then there are references, then there's an explanation, then there are a bunch of additional notices, then there's the place where you "sign". They do want your email address, but you can check a box saying you don't want to be notified about any additional related petitions, and I've never been spammed by them to my knowledge. You can also check a box if you don't want your name showing up on the internet. It only takes a couple of minutes.

    You may have heard about the new data that suggests that ME/CFS may be caused by a retrovirus called XMRV. Given that a retrovirus was suggested as the cause in the early 90's but rejected by the CDC, a lot of people think this is a good time to discuss why the science has been so bad. Hence, the petition. If you want more information before considering whether or not to sign, call, email or shout loudly and I'll be happy to explain further. If you know anyone else who might be willing to sign it'd be great to pass it along.

    Here's the link:

    If you've seen this post before, I apologize. I've been putting it on threads that seem appropriate. Anyway, if you have the energy to send this to friends, I think it's worth the time.

    Also, please feel free to copy & paste and post this anywhere (Facebook, MySpace, Twitter, other forums, any other places you can think of), and to alter it in any way that works for you. If you hate ME/CFS use another name. My goal is to get as many signatures on that petition as possible.

    By the way, I think Tom Kindlon has forgiven me for describing the petition as "a bit of a slog". It's a great petition. I just want people not to give up reading before they sign. Some people have short attention spans. I know I do at times. If you want to experience a real slog, try reading the original paper on the Reeves definition. Now that's a slog.

    Here's the link again:
  2. mbofov

    mbofov Active Member

    Thanks for posting! I may have signed this before, cannot remember, but signed again anyways -

  3. karynwolfe

    karynwolfe New Member

  4. bakeman

    bakeman New Member

  5. karynwolfe

    karynwolfe New Member

    Just 50 more to hepl change our lives, please give the link to anyone who will isten!
  6. Spinetti

    Spinetti New Member

    I thought it was that important.
  7. karynwolfe

    karynwolfe New Member

    Thanks a bunch! I think we've gotten so close, it's bound to make an impact =)
  8. QuayMan

    QuayMan Member

    There was a clear-out of duplicates before it got to the committee.
    Best to have it "Reeves-proof" I think.

    So 81 needed.
    They can still say "nearly 2000" signatures now anyway.
    It was over 1000 at the the last one.

    2000 by Friday when they do the recommendations is still possible as there has been a great response in the last couple of days.
    [This Message was Edited on 10/28/2009]
    [This Message was Edited on 10/28/2009]
  9. Elisa

    Elisa Member


  10. karynwolfe

    karynwolfe New Member

    Well 1,922 with only 81 duplicates isn't bad at all, I think...

    I've done so much to help this I've made myself a bit worse unfortunately. Time for someone else to take over from here and advocate, I've done all I can but will be watching the conference tomorrow

    cheers, all
  11. PoodlesMom

    PoodlesMom New Member

    signed the petition and wrote a little something.

    Thanks for all this......Kathie (Wolfe) Mullins

  12. Bunchy

    Bunchy New Member

    I've just signed it and also added some (IMHO educated) comments from a UK person's point of view!

    Love Bunchy x
  13. QuayMan

    QuayMan Member

    RE: Well 1,922 with only 81 duplicates isn't bad at all, I think...
    Just to be clear, the duplicates have been deleted.
    These weren't deliberate duplicates I imagine - people signing months apart.
    It was after these were deleted that 81 were then needed.

    It's a pain that some people's comments don't show up.
  14. misskoji

    misskoji Member

    Also put a feed on Facebook and emailed everyone I can think of. We are so close.

    Thank you QuayMan for all you do.
  15. bakeman

    bakeman New Member

  16. hermitlady

    hermitlady Member

    I signed (#1951!) and then my husband tried to, but it wouldn't let him because we were using the same computer. I guess they don't trust us :(

    We'll try again later.

    Thanks for posting this.

    edited to let you know the latest # of sigs.......[This Message was Edited on 10/29/2009]
  17. bakeman

    bakeman New Member

  18. karynwolfe

    karynwolfe New Member

    Great, let's keep it going! I dont' know if they print it out either for today or tomorrow, but the more the better

    Edit: 1962!
    [This Message was Edited on 10/29/2009]
  19. bakeman

    bakeman New Member

  20. bakeman

    bakeman New Member