May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
Discuss the article on the Forums.

Live feed of 12/13 January CFSAC Meeting

Discussion in 'Upcoming ME/CFS Events' started by Sasha, Jan 11, 2017.

  1. Nielk

    Nielk

    Messages:
    6,883
    Likes:
    10,630
    Dane Cook is talking about his working group - Stakeholders Engagement Working Group.

    Interesting to note that at the start, CFSAC had 4 in-person meetings with patients testifying fro 5 minutes each - 4 times a year. Over the years, these meetings were cut to two in-person meetings with 5 minutes for each patient testimony. Now, we only have one in person and one teleconference a year with 3 minutes per patient. In addition, in 2016, we only had one meeting for the entire year. Now, they have cut the webcast for us for the in-person meetings.

    HHS is great at forming working groups to discuss things but, in actuality, none of this talk matters - IMO.
     
  2. JayS

    JayS Senior Member

    Messages:
    194
    Likes:
    534
    This is Dane Cook? I missed the introduction. Thought the one saving grace was that this had to be someone who had zero experience with ME/CFS.
     
  3. Nielk

    Nielk

    Messages:
    6,883
    Likes:
    10,630
    Ha ha ha
     
  4. Denise

    Denise Senior Member

    Messages:
    1,095
    Likes:
    3,449
    TO CLARIFY - one had to announce oneself when entering the call, so they knew which public comment providers were on the call. Those people were unmuted for their comment time.
     
    Nielk likes this.
  5. Nielk

    Nielk

    Messages:
    6,883
    Likes:
    10,630
    Thanks, @Denise for clarifying. I have my timeslot tomorrow.
     
    Joh and Denise like this.
  6. JayS

    JayS Senior Member

    Messages:
    194
    Likes:
    534
    This is the part where they talk about how the whole thing is designed to never function properly.
     
    actup and Kati like this.
  7. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,523
    LOL.
     
    Webdog, Hutan and Kati like this.
  8. Sasha

    Sasha Fine, thank you

    Messages:
    12,803
    Likes:
    34,275
    UK
    Just a reminder that today's session begins at 9 a.m. East Coast time - that is, 2 p.m. UK time, so a couple of hours to go until the start.
     
    Hutan and AndyPR like this.
  9. Nielk

    Nielk

    Messages:
    6,883
    Likes:
    10,630
    Started. Vicky Whittemore talking now.

    Any investigator can submit for a grant from NIH. CDC study reveal the heterogeneity of patients which should help. They continue the discussion as far as which criteria to use for research. They want to expand that discussion with stakeholders.
     
    actup and MEMum like this.
  10. Nielk

    Nielk

    Messages:
    6,883
    Likes:
    10,630
    RFA to address the stigma in ME/CS.
    NIH's institutes involved have committed to five-year awards.
    $7 million for 2016 and $7 million set aside for 2017 (? I thought it was supposed to be double!)
     
    actup, Webdog and MEMum like this.
  11. Nielk

    Nielk

    Messages:
    6,883
    Likes:
    10,630
    Talking about the intramural NIH study. Nothing new here.
     
  12. Nielk

    Nielk

    Messages:
    6,883
    Likes:
    10,630
    RFA's which will be announced in January will be for a total of $29,750,000 over 5 years. Which makes it about 6 million a year - for the RFAs.
     
  13. Nielk

    Nielk

    Messages:
    6,883
    Likes:
    10,630
    I think this total is for both the centers and the data management RFAs.
     
    ScottTriGuy likes this.
  14. Nielk

    Nielk

    Messages:
    6,883
    Likes:
    10,630
    Vicky just confirmed that this is for both.
     
    actup and MEMum like this.
  15. Nielk

    Nielk

    Messages:
    6,883
    Likes:
    10,630
    I can't remember how many centers they proposed. Is it 3 or 5?
     
  16. mfairma

    mfairma Senior Member

    Messages:
    204
    Likes:
    1,049
    Ha!

    "NIH to spend 200 million on finding cure for CFS*"
    *Over next 100 years
     
    Izola, Webdog, halcyon and 4 others like this.
  17. Nielk

    Nielk

    Messages:
    6,883
    Likes:
    10,630
    I would laugh if it wasn't so desperately sad.
     
    Jan, MEMum, NL93 and 4 others like this.
  18. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,478
    Likes:
    511
    Clay, Alabama
    Herza fail: This contract was discussed at the last CFSAC meeting as a problem and report back. Yet, the ex officio today had no knowledge of it? FAIL!
     
    actup likes this.
  19. Rrrr

    Rrrr Senior Member

    Messages:
    1,555
    Likes:
    694
    so the RFAs are to be for about $30 million over 5 years. thus, as noted above, this is $6 million per year.

    in other words, this is a continuation of the same old pathetic gov't response we have seen over the last 30 years.

    (@mfairma who ever said this?: "NIH to spend 200 million on finding cure for CFS")
     
    Zombie_Lurker and NexusOwl like this.
  20. Cheshire

    Cheshire Senior Member

    Messages:
    1,122
    Likes:
    9,003
    mango, Jennifer J, actup and 5 others like this.

See more popular forum discussions.

Share This Page