NIH aiming to commit RFA funds to ME/CFS research

Update: NIH confirms RFAs will happen

On March 30 NIH revised it’s response to the CFSAC recommendations and made clear there would be more than one RFA, without saying how much money it would commit.

The Trans-NIH ME/CFS Working Group is in the final stages of putting together a comprehensive research strategy for ME/CFS research that will include new RFAs

Ever since Director Dr Francis Collins announced that the National Institutes of Health (NIH) would ‘ramp up’ funding for ME/CFS, patients have been asking “where are the RFAs?”

RFAs, or Requests for Applications, are a major way the NIH encourages research in particular areas, by putting aside a pot of money for them and inviting grant applications. Patients – and the Chronic Fatigue Advisory Committee – have been calling for the NIH to put money into ME/CFS RFAs for years.
To date, no RFAs have been announced, but it turns out the NIH is working hard on this, though they can’t announce anything until it’s been finalised – and approved.
At Tuesday’s tele-briefing, Collins said “[A] vigorous re-invigorated Trans-NIH Working Group is working to define the strategic areas of research that would form the basis for a Request for Applications to the extramural community, both in the short term and in the longer term.

“We’re quite serious about looking for opportunities to expand our research in this area and to recruit new investigators into the field, bringing new eyes and new brains into the issue of trying to understand the puzzling aspects that previously have eluded us.”

Later in the call, Jennie Spotila asked Dr Walter Koroshetz, Chair of the Trans-NIH ME/CFS Working Group, “Can you make a commitment to this community today that a request for applications with set-aside funds is going to be part of the short and long term strategy coming out of the Trans-NIH Working Group?”
Koroshetz replied, “I can’t really say that. I can tell you that that’s our goal. That’s what we’re working towards and we’re hopeful but I couldn’t say publicly what we’re going to be able to do until we have a plan that we can make public”.
Elsewhere in the briefing, Dr Vicky Whittemore said they were working towards approval by various appropriate NIH councils in May, adding, “We will be able to move forward with initiatives soon after that”, though she didn’t explicitly say that this would include RFAs.
So that’s still not a definite ‘yes’, but both Collins and Koroshetz have made it clear that RFAs for ME/CFS research are exactly what they both want, though they won’t commit publicly until it’s been signed off.
Watch this space.
 
 
 

Facebook
Twitter
WhatsApp
Email

Latest News

Press Release: UNC Closes its Long COVID Clinic – the Only One in the State

The University of North Carolina closed its Long COVID clinic last week after its federal funding ran out. It was the sole Long COVID clinic in North Carolina.  The clinic has been a lifeline to thousands of people living with complex conditions often triggered by infection, including Long COVID, myalgic encephalomyelitis / chronic fatigue syndrome

Read More »
rectangle image with a greyish background. three white pillows stacked from smallest to largest. the words, Pillow Writers en Español in black font. the #MEAction logo in the bottom right corner.

Pillow Writers en Español

#MEAction is thrilled to announce Pillow Writers Network has expanded once again! This time with a dedicated group for Spanish speakers: Join us for our Pillow Writers En Español meetings! A place where ME/CFS/Long Covid patients are welcome to participate through writing. This #MEAction-sponsored event has been held in English for over three years. We

Read More »