RFA Ticker, 10/10/16


It’s a new year (in Washington DC, anyway). I didn’t have to turn the RFA Ticker back to zero, since that is where it was all of FY 2016. But here we are, so let’s get started on FY 2017.

NIH issued three times more funding in RFAs in the first week of FY 2017 than all the funding that ME/CFS research received in FY 2016.

Here are the cumulative numbers:

FY 2017 FY 2016
RFAs Issued 9 352
Dollars Committed $23,087,00 $2,840,680,617

And here is the table for FY 2017 alone.

Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS
10/3/16 9 $23,087,00 Zero

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

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6 Responses to RFA Ticker, 10/10/16


    Male pattern baldness could be cured in our lifetimes!

  2. JS says:

    I’m pretty sure the ‘male pattern baldness’ thing that people always bring up is a misnomer. Or, simply not true.

    Jennie, I asked you a question on Facebook recently. Something about what it means when we talk about PEM, especially if we’re going to shoot for the goal of requiring it in criteria and, presumably, research. What does it mean? I mean, we know what it means, but how do we define it? The CDC has said they can’t define it. Where does anyone think the cutoffs should be? What then of a patient that just misses a cutoff? I’m not sure this is an issue to begin with, but if it is, I don’t think there’s been enough discussion of it.

    Last question, and I’ve been concerned about this for a long time: what if there is an RFA, and then money is awarded to research teams we would tend to feel is a waste, or could even be counterproductive? After all, we’re still dealing with the idea that someone, somewhere, is deciding what applications have merit, and which ones do not. Yes, I’m encouraged after seeing the recent roster of experts on the panel, but it was the first time anyone saw a panel that looked qualified, on balance, pretty much ever, right? I’m not sure how much trust I can put in the process, much as I’d like to. If people clamoring for RFAs end up seeing money going to Seattle and Stony Brook…I really don’t want to see this filed under, ‘be careful what you wish for.’ You’ve done a great job with this ticker. I remain concerned about unintended consequences.

    • Jennie Spotila says:

      This is a very good point – how do we define PEM in a meaningful way? Lenny Jason has done several papers on this problem, and his frequency/severity cutoffs are also a good place to start.

      In terms of who succeeds in getting funding under an RFA, yes this is a risk. The grant review panels have been well composed for several years now, so we’re certainly better off there than we were even five years ago. But it is certainly still possible for awards to be made that you or I or others may not be happy with. There is a risk of unintended consequences, and probably a higher risk here than in other fields (like HIV or MS). But we can’t move forward without taking that risk.

  3. Has kind of a ‘been there, done that’ feeling to it, doesn’t it?

    Having hopes raised, and then dashed, is hard on us PWCs, though whether it is harder than just living without hope decade after decade isn’t clear.

    Keep it up – I don’t think the activists who are finding their voice for us are going to quit, and the PACE nonsense is getting some very bad publicity.

    But I’m so very tired, and there are so many other competing interests out there for research money…

    We’re not going away.

  4. kathy d. says:

    I don’t think I have hope right now.

    What gives me hope is the strong advocacy work going on, the protests and the letter signed by Congressional representatives. All that is the result of hard work by ME/CFS sufferers, relatives, advocates and some medical practitioners. And, of course, David Tuller, with his dissection of the PACE trial.

    What can we do? Right now, I’m not going to feel uplifted until I see dollar amounts, deadlines and names of people working on the research.

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