Written CFSAC testimony - has to be in on or before Wednesday

Discussion in 'Fibromyalgia Main Forum' started by QuayMan, Oct 12, 2009.

  1. QuayMan

    QuayMan Member

    (From Co-Cure)

    [I just sent in a message to apply to make a written submission. I wasn't
    sure I needed to do this but thought it meant I wouldn't have to make the
    submission till Oct 15, however the details below make it clear written
    submissions have to be in by Oct 14. Tom]


    The next Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting will be
    held on Thursday, October 29 and Friday, October 30, 2009, from
    9:00am-5:00pm EDT. Please link to
    http://edocket.access.gpo.gov/2009/pdf/E9-21334.pdf to access the Federal
    Register Notice.

    Due to the number of requests, CFSAC public comment slots are filled. A
    waiting list for public comment has been developed for those wishing to make
    comments; they will be accommodated in the order received, and if no-shows
    or cancellations occur.

    You may submit written comment, which will be provided to the Committee in
    read ahead materials and to the public on site at the meeting, if testimony
    is received by October 14, 2009. Written testimony is limited to five (5)

    The proceedings of the meeting will be accessible via videocast. More
    information will be posted on the CFSAC website at
  2. mbofov

    mbofov Active Member

    for keeping us up-to-date on this!

  3. QuayMan

    QuayMan Member

  4. hensue

    hensue New Member

    All I know is the cdc is friggin nuts! After reading what the dude said in the NYT today.
    He made me so angry.
    What do you want me to do and I will do it
  5. QuayMan

    QuayMan Member

    Hi Hensue,

    If you don't like the direction the CDC are going in or what they have been doing, you could say so in an E-mail.

    Send it to: CFSAC@hhs.gov

    Unfortunately you don't have much time - it has to get there in less than 48 hours (before end of business on Wednesday, which I presume is 5pm EST).

    The CDC will be announcing their five year plans for CFS at this meeting. Bill Reeves' bosses will be at it. What you write will be circulating to all the committee before the meeting and all the meeting attendees. So you have the option that it also goes up on a website with lots of other submissions.

    The more people who give out about the CDC, the more difficult the meeting will be for the CDC team (probably). And the committee might ask tougher questions.

    So if you want to give out about the CDC, feel free.
  6. zeowa

    zeowa New Member

    It takes a phenomenal amount of ignorance and arrogance to make the statements that he made (Reeves) and I hope that, even though the CFS population has reason to fear him, that the scientific community sees him as the laughing stock I presume he is. I have no doubt that the CDC can get whatever results they are looking to get--who doesn't after more than 2 decades!?

    QuayMan, what types of information can we send by email? I am passionate about having a voice in this but I am too unwell to get into the work of dissecting the specifics of the CDC's policy toward CFS at this time. I do not want to send an email simply saying how pissed or disappointed I am; I feel like that may not be as useful.

    Thanks for this info and any advice.

    ETA: I am working on a draft, will only be about 2 pages long (doesn't compare with all of the well-footnoted and excellent letters I've seen around phoenixrising), but a voice is a voice, right!?
    [This Message was Edited on 10/12/2009]
  7. AuntTammie

    AuntTammie New Member

    I am writing something - almost finished with it......I didn't realize that the public comments were filled, though and was waiting till I had this written before deciding whether to try to speak over the ph to them, too....guess that decision has been made for me - kind of bummed, but also glad to know that there are enough people who want to speak that it has filled - that is a good sign
  8. AuntTammie

    AuntTammie New Member

    anyone who hasn't written - it doesn't have to be any big thing - just letting them know any and/or all of the following would be good:

    - that you don't agree with the CDC's plan
    -that you want the name changed
    -that you want them to start using the Canadian definition (and stop using the empirical definition)

    -that you want them to stop ignoring all the objective physical abnormalities that have been shown to exist in ME/CFS patients and stop pushing CBT and GET
    -that you are concerned that Reeves has stated that he wants to model the US treatment after that of the UK - their treatments are psychological - we have a physical illness and psychological treatments will not work

    -anything else that you feel strongly about re the CDC's pseudo research plans for ME/CFS

    the more the people who respond, the better, so please please please, if you can write anything, make your voice heard.....the CDC really needs to be stopped from continuing along the path that they are on, and if we don't even try, it looks like we don't care
    [This Message was Edited on 10/13/2009]
    [This Message was Edited on 10/13/2009]
  9. AuntTammie

    AuntTammie New Member

    please write
  10. nah.stacey

    nah.stacey Member

    Just posted my two cents. Hope it make a difference somewhere.
  11. QuayMan

    QuayMan Member

    People could look at AuntTammie's suggestion (post #8).

    Regarding the Canadian definition, it'd be good if people also asked the CDC to stop using the Reeves' criteria (the so-called empiric criteria). They are really rubbish and nobody else around the world is using them. They mean that people with just psychiatric disorders are seen as having CFS. This really messes things up. So maybe say you don't want these criteria and then suggest that the Canadian criteria would be better.
  12. QuayMan

    QuayMan Member

  13. AuntTammie

    AuntTammie New Member

    thanks for the compliment....and I edited my post to add your suggestion that they need to stop using the empirical definition (I meant to write that in the first place, so thanks for bringing it up again)
  14. mbofov

    mbofov Active Member

    for your suggestions - I was feeling a little overwhelmed, trying to decide what to write, this is a very big help!

  15. AuntTammie

    AuntTammie New Member

    you are welcome, and if you are going to write, then thank you, too! : )
  16. zeowa

    zeowa New Member

    Would anyone be willing to look it over? I can't make sense of it anymore! I haven't found postings here of letters; is there somewhere else to look?
  17. zeowa

    zeowa New Member

    Even if we are not signed up for testimony, we can send a letter to CFSAC? I think I'm emailing mine regardless since it's now at 4 pages and I've just about put myself in the ground over it!
  18. QuayMan

    QuayMan Member

    Yes, you don't need to be signed up for written up submission - just send it in in the next 8.5 hours.
  19. zeowa

    zeowa New Member

    I just finished the final, final, final version and sent it in so I couldn't make anymore changes. Feels good to have it behind me. I got some nice feedback over at Cort's site and am feeling happy that you got this ball rolling!
  20. mbofov

    mbofov Active Member

    It looks there is a typo in the first post here. Here's what the edocket notice actually says:

    Members of the public who wish to have printed material distributed to CFSAC members for discussion should submit, at a minimum, one copy of the material to the Executive Secretary, CFSAC, prior to close of business on October 15, 2009. Submissions are limited to five typewritten pages.

    You can see it directly at http://edocket.access.gpo.gov/2009/pdf/E9-21334.pdf