Live feed of 12/13 January CFSAC Meeting

[shannah]

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.

Pathetic - Don't they think we know how to divide?

Anybody know what the reaction in the room is - from Carol or others?

 

[mfairma]

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")

No one. Just me making a joke about how 30 million seems kind of impressive, but then isn't when spread over 5 years.

 

[Rrrr]

Assistant Sec. of HHS DeSalvo sounds committed to us! So sad she is leaving. Thank you to the ME activists who met with her!

 

[Nielk]

Gabby Klein's CFSAC comment

https://relatingtome.net/2017/01/13/cfsac-comment-gabby-klein-january-13-2017/

 

[Tom Kindlon]

https://twitter.com/i/web/status/819958546364301312

 

[Sasha]

Argh... I don't like the idea of being obliged to add WebEx to my computer (?) to listen to this thing - it says WebEx can read and change all your data on the websites you visit. I don't know what that means but I don't like the sound of it. I wish they'd put this up on YouTube.

 

[Nielk]

Eileen Holderman's CFSAC comment - https://relatingtome.net/2017/01/13/eileen-holderman-cfsac-comment-january-13-2017/

Excerpt:

* remove the expired CDC/Medscape video online course

* remove all references to the Oxford Case Definition in the CME online courses

* remove references to CBT

* remove references to GET

* remove references to St. Bart's and NICE Guidelines

* remove all links to CDC psychosocial published studies on ME/CFS

* remove all implications both subtle and overt to ME/CFS as a psychogenic and/or a fatigue "condition"

 

[usedtobeperkytina]

I want to share how important these public comments are. This is for a couple of reasons:
1. For those who serve on the committee, and ex officios, who know the disease, they may get frustrated with the challenges in getting some progress. I remember one committee member, when his term ended, said he often thought about quitting the committee. Yet, hearing the desperate stories of what it's like for the patients kept him on, knowing the committee is the only way to get the government's ear.
2. There are always new people coming on as ex officios or committee members. They need to be educated. It may be a slow way to do it, but when an individual has any interest or connection to the disease, they need to be informed of what the disease is and its impact. Only patients can describe this.

 

[AndyPR]

Solve have put Carol Head's presentation up as a Facebook video here - www.facebook.com/SolveMECFSInitiative/videos/vb.47921632107/10154211462122108/

They haven't said but I would assume they will put it up on their Youtube channel as well, which is here https://www.youtube.com/channel/UCzrFQHNiCc_6AMpw_GpWZOA (and in fact the video is already there...)