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Live feed of 12/13 January CFSAC Meeting

Nielk

Senior Member
Messages
6,970
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.
 

JayS

Senior Member
Messages
195
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.
 

Denise

Senior Member
Messages
1,095
CFSAC - If the meeting is teleconference (and slides) and if one only has one phone, how can one listen if one has to have a phone line available for public comment?

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.
 

Sasha

Fine, thank you
Messages
17,863
Location
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.
 

Nielk

Senior Member
Messages
6,970
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.
 

Nielk

Senior Member
Messages
6,970
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!)
 

Nielk

Senior Member
Messages
6,970
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.
 

Rrrr

Senior Member
Messages
1,591
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")