RFA Ticker, 4/4/16

ticker
Last week was a big one for RFA news.

NIH issued revised responses to the August 2015 CFS Advisory Committee recommendations. Regarding RFAs, NIH said: “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.”  (emphasis added)

So, awesome news, right? Not so fast, cowboy. This is a commitment (which I do applaud) to issue new RFAs. But there are no specifics about amounts and timelines. And that’s what really matters.

What if the new RFAs will not be issued until 2017? 2020? What if the new RFAs are for $1 million? Less? The smallest RFA that NIH has issued since October 2015 is $250,000. A total of 98 RFAs have been for less than $5,000,000. That will not get the job done for ME/CFS.

A written commitment to include new RFAs is a first step. But the amount of money and timeline are very important pieces of information that we do not have yet. Let’s suspend the standing ovation for NIH until we have that information.

In other RFA news, NIH committed a whopping $161,000,000 last week, but none of it was for us.

  • Total RFAs Issued by NIH: 176 (October 2015 to date)
  • Total Dollars Committed to RFAs: $1,880,900,000 (October 2015 to date)
  • Total RFAs for ME/CFS: ZERO (October 2015 to date)
Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
3/28/16 13 $161,000,000 Zero
3/21/16 1 $2,700,000 Zero
3/14/16 5 $23,650,000 Zero
3/7/16 9 $82,710,000 Zero
2/29/16 1 $1,890,000 Zero
2/22/16 9 $30,100,000 Zero
2/15/16 4 $26,500,000 Zero
2/8/16 5 $9,500,000 Zero
2/1/16 8 $26,000,000 Zero
1/25/16 4 $9,300,000 Zero
1/18/16 2 $4,500,000 Zero
1/11/16 10 $71,200,000 Zero
1/4/16 0 $0 Zero
12/28/15 0 $0 Zero
12/21/15 3 $10,260,000 Zero
12/18/15 5 $20,260,000 Zero
12/11/15 27 $765,090,000 Zero
12/4/15 6 $26,600,000 Zero
11/27/15 4 $21,000,000 Zero
11/20/15 15 $134,400,000 Zero
11/13/15 2 $16,100,000 Zero
11/6/15 10 $22,850,000 Zero
10/30/15 7 $49,800,000 Zero
10/23/15 10 $33,200,000 Zero
10/16/15 0 $0 Zero
10/9/15 13 $332,450,000 Zero

If you want more background on the RFA Ticker, read the inaugural post.

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13 Responses to RFA Ticker, 4/4/16

  1. The road to hell is paved with good intentions.

    Zero is still zero – and writing about some unknown and mythical future will not get attention diverted from them.

    Keep up the pressure – good job!

  2. Janine says:

    This is good news! A big ” Thank You!!” to the Trans-NIH ME/CFS Working Group for the work completed so far. I feel encouraged with the progress we are seeing from the scientific research community, upcoming NIH study, CDC on going study, and now the Trans-NIH ME/CFS Working Group.

    • jimells says:

      I feel encouraged by the privately funded research groups. NIH and CDC? Not so much.

  3. Freda says:

    Words are meaningless, it’s actions that count. Zero promised, is the same as zero committed, it’s still zero.

  4. Kathy D. says:

    Thanks for this information and I agree.

    I’m in the “Don’t count your chicks until they’re hatched!” group. And “Don’t hold your breath!” too.

    I’ll believe it when I see it. They are inching toward progress but until it’s real I’m not celebrating.

  5. Simon McGrath says:

    ” But there are no specifics about amounts and timelines. And that’s what really matters.
    What if the new RFAs will not be issued until 2017? 2020? ”
    Huh? If it’s approved, will surely be for this financial year, not some vague commitment out of an unknown budget in future years?

    And of course the total is still zero, we know May is the earliest we’ll see action. Let’s hope we will see those RFAs as soon after approval as posssible. How much will be critical.

    • Jennie Spotila says:

      It’s important to note that NIH is already issuing RFAs to begin in FY2017, and with commitments going out as far as 2020. We are halfway through the fiscal year, so that is not surprising.

      Also important to remember that the strategic plan is being presented to the Councils in May. That’s not a guarantee that we’ll get an announcement in May (although I hope we do).

      • Simon McGrath says:

        Didn’t know that. Just to clarify, NIH is announcing RFAs that won’t release any funds til 2020?

        But given Francis Collin’s commitment to ramp up mecfs funding, it seems a bit unlikely the NIH is going to announce RFAs and say ‘but no money for years’.

        I can see that money might not be released til FY 2016/17, given the likely length of time a) to allow for submissions, hopefully from researchers who are new to the field too, and b) for review and decisions.

        • Jennie Spotila says:

          If I recall correctly, the RFAs that include funding as far out as 2020 begin with funding in FY2017, and then includes set asides per year for 2020.

          I think, given that this isn’t being presented to Council until May, that the earliest we will see an RFA begin is FY2017. Hope I’m wrong.

  6. magdalena says:

    just wanted to remind you that i think you are fantastic <3 🙂 that is all.

  7. kathy d. says:

    Maybe I’m the class skeptic here, but if Francis Collins says he’s committed to researching ME/CFS and takes this seriously, but funds won’t be allocated until FY 2017 at the earliest, how is this progress?

    • Jennie Spotila says:

      Just remember that I’m speculating, Kathy. We’re all reading tea leaves at this point.

Comments are closed.