NIH Funding Update From Solve

[Never Give Up]

From their Facebook post.

Solve MECFS Initiative
18 hrs ·
SMCI President Carol Head met with NIH/NINDS Program Director Vicky Whittemore this week. Vicky confirmed two funding mechanisms for ME/CFS are making their way through the Trans-NIH Working Group. Both NINDS and NIAID are fully on board, having committed funding, while other institutes are still working through the process. Vicky remains confident that funding for ME/CFS research will come through.

Regarding last week’s congressional sign-on letter, Vicky believes that the NIH must respond to Congress and that the letter truly does matter. Kudos to all who worked so hard to make it happen.

 

[Bob]

Regarding last week’s congressional sign-on letter, Vicky believes that the NIH must respond to Congress and that the letter truly does matter.

Kudos to all who worked so hard to make it happen.

Much Kudos!!! And much respect!!! And many thanks!!!
An enormous amount of thankless work goes into that sort of advocacy!

 

[dreampop]

Vicky confirmed two funding mechanisms for ME/CFS are making their way through the Trans-NIH Working Group.

Any idea what those mechanisms are?

 

[*GG*]

From their Facebook post.

Regarding last week’s congressional sign-on letter, Vicky believes that the NIH must respond to Congress and that the letter truly does matter. Kudos to all who worked so hard to make it happen.

Oh, so it's not a law that they have to repond? Seems like some agencies pay no respect to Congress these days. Guess Congress gets what it deserves, because it still funds lots of crap!

GG

 

[aimossy]

From Cort Johnson's blog 'The NIH’s Big Change: Is it Coming For Chronic Fatigue Syndrome (ME/CFS)?'

"The Working Group is preparing two RFAs which will support ME/CFS collaborative research centers across the United States and a Data Management Coordinating Center. We hope to finalize and release these funding opportunity announcements as soon once they complete the NIH approval process."

It isn't clear what may come in the centers RFA and if it will include any large funding for the actual research. If it does include funding, based on what solve have just reported it seems at least positive that it might, it would need to be considerable to make a dent in funding needs for teams like Lipkin and Davis, not to mention other centres. It also isn't clear how long this could take. Honestly, I am chomping to hear the actual announcements.

 

[dreampop]

From Cort Johnson's blog 'The NIH’s Big Change: Is it Coming For Chronic Fatigue Syndrome (ME/CFS)?'

"The Working Group is preparing two RFAs which will support ME/CFS collaborative research centers across the United States and a Data Management Coordinating Center. We hope to finalize and release these funding opportunity announcements as soon once they complete the NIH approval process."

It isn't clear what may come in the centers RFA and if it will include any large funding for the actual research. If it does include funding, based on what solve have just reported it seems at least positive that it might, it would need to be considerable to make a dent in funding needs for teams like Lipkin and Davis, not to mention other centres. It also isn't clear how long this could take. Honestly, I am chomping to hear the actual announcements.

Yes, I am also quite interested in hearing this for many reasons. I can see the NIH going many directions, actually, but the one thing I do not see is a major step forward. Seems like those two RFAs are a dramatically reduced form of the RFA proposal for Center's for Excellence. AKA making it unrecognizable from the Centers for Excellence program that proved effective for rare genetic disorders. I guess we will have to wait to see if the RFAs actually provide funding, it seems unclear from Cort's blog, and how much that funding would be.

I've already commented elsewhere about Whittemore's comments on private funding and hypothesis driven research. The private funding comment was shocking because it makes no sense from an economic perspective and I consider it to be grade A bureaucratic bull shit - and also demonstrably wrong both in mandate and in NIH practice. Hypothesis driven research has not only been a problem for CFS, it is a blindspot in all NIH research, and many private articles have been written about creating efficiency and breakthroughs in the grant mechanism.

 

[Cheshire]

https://twitter.com/i/web/status/786206108171902976

I copy the image here as it's complicated to read in the tweet: