Expired Opportunities

expiredNIH funding of ME/CFS research has bumped up against a deadline that could have dire consequences for 2015 and beyond. The primary mechanism for grant applications has expired.

Grant applications to NIH must be submitted in response to calls for proposals. Sometimes that takes the form of an RFA, in which money is set aside for a specific purpose. ME/CFS advocates have been begging for an RFA for years without success.

The usual way to submit a grant application is in response to a Program Announcement, and this has been the norm in ME/CFS for many years. However, the current Program Announcement EXPIRED on February 25, 2015. In the past, these announcements have been extended by a year or more, as an apparent matter of routine. But not this year. The only way to submit an ME/CFS grant proposal now is for collaborative research at the NIH Clinical Care Center, and that program announcement expires on March 20, 2015.

But there is another troubling signal. The last meeting of the CFS SEP to review ME/CFS grant applications was September 2014, and there is no meeting currently scheduled. In 2012-2014, the SEP met three times per year, usually once in January/February, once in April/May/June, and once in September. Why is there no early 2015 meeting? This means that applications submitted in the last six months are just sitting at NIH, waiting for the SEP to be convened.

What does all this mean for NIH funding of ME/CFS research in 2015? Worst case scenario – there is none, unless a researcher can shoehorn an ME/CFS project into another program announcement. Best case scenario – NIH is preparing to issue a new program announcement or RFA to take advantage of the P2P and IOM findings. I’ve sent an inquiry to Dr. Mariela Shirley, chair of the Trans-NIH ME/CFS Research Working Group, and will report what I hear from her.

UPDATED MARCH 13, 2015: I emailed Dr. Shirley asking if NIH will issue a new Program Announcement/RFA, and when the CFS SEP will meet again. On March 12, 2015, she replied:

Dear Ms. Spotila,

Information about funding opportunities is published in the NIH Guide to Grants and Contracts.  Anyone can join the weekly listserv for the Guide TOC to review all newly published content http://grants.nih.gov/grants/guide/listserv.htm . Please note that the “Guide” is the official notice vehicle for NIH funding opportunities.  A spring meeting date for the ME/CFS SEP has not yet been set.

UPDATED MARCH 20, 2015: As noted by Anonymous in the comments, the SEP will meet on April 14, 2015.

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18 Responses to Expired Opportunities

  1. Cort says:


    Who knew? Jennie knew – thanks for digging into what’s going on with this extraordinary situation and being our on-point person on this stuff.

  2. Cecelia says:

    THANKS SO MUCH for keeping your eye on this ball. The bureaucratic temptation to make it disappear, if that be the case, will be lessened through just this sort of watchful reporting.

  3. Clark ellis says:

    Just to echo what Cort said; thanks for digging into this and being on top of it. Very interesting. You know, cautiously, a bit of me thinks this might actually turn out to be a good sign. I Could actually see them anouncing an RFA. I feel the mood is shifting our way at last. It has to happen one day, eventually. But we’ll have to wait and see. I wouldn’t argue with anyone who thinks I’m bonkers – it could equally turn out to be bad news. Thank for trying to find out for us.

  4. Nita Thatcher says:

    Thank you Jennie for always being on the ball with stuff like this! Hoping for the best case scenario! Preparing for the worst!

  5. Claire Prideaux says:

    Thanks for catching this and for sending an inquiry.

  6. catherinelyn says:

    Wow! Thanks so much for you diligent investigation and monitoring of this Jennie! I do hope that your best case scenario is the explanation for the lapse in meetings and communication. Do you think there is anything more we patients/advocates can do in the next few days to help make sure things turn out for the better?

    • Jennie Spotila says:

      Write to your Congressman and ask for funding. Write to NIH and demand funding. In the absence of organized campaigns, we have to do this the hard(er) way.

  7. Kathy D. says:

    Thanks for following up on this, telling us and contacting Dr. Shirley.

    I have a very bad feeling about all of this and ME/CFS research being funded.

    You are right: Putting as much pressure on Congresspeople is good. We all
    have to do this, as well as on NIH and HHS.

    By the way, when does HHS have to respond in writing to the IOM report?

    And, also, can anyone explain to this befuddled ME/CFS brain fog sufferer (as this point) what happened with ME/CFS Forum? I went to read it and got a sign-up notice. I’ve never signed up because I don’t comment nor do I want to. Just
    want to read posts.

    Then I searched and got a different website with topics and articles. Is it the
    same blog? It’s very different and harder (for me) to figure out. So, any
    information is helpful. Maybe these things don’t throw other people for a
    loop, but they do it to me.

  8. Claudia Goodell says:


    As always, thank you for doing the tough work and for continuting to dig through this. So, according to the response there is no Spring meeting scheduled, and according to the information I read at that link there is currently no accessible money in the NIH pipeline for ME/CFS. Is that your takeaway? Also, does this mean that the estimated 5 million that the NIH has budgeted for ME/CFS for 2015 will not be spent if this current situation doesn’t change? Is it these program announcements, RFA’s, collaborative research at the NIH clinical care centers, SEP grant application reviews (approvals) the only mechanisms by which the NIH budgeted money is allocated to specific projects and subsequently spent?


    • Jennie Spotila says:

      “currently no accessible money in the NIH pipeline for ME/CFS”
      Technically, that’s not 100% true. ME/CFS applications could still be filed under other non-ME/CFS specific program announcements or even generally (according to a comment from someone on FB). But will ME/CFS researchers file under other program announcements? And how likely are they to succeed? I can’t answer either question.

      “does this mean that the estimated 5 million that the NIH has budgeted for ME/CFS for 2015 will not be spent if this current situation doesn’t change?”
      Quite possibly. The projections are just that – estimates. There’s no guarantee that we won’t get less or more than projected.

      “Is it these program announcements, RFA’s, collaborative research at the NIH clinical care centers, SEP grant application reviews (approvals) the only mechanisms by which the NIH budgeted money is allocated to specific projects and subsequently spent?”
      I’m not sure I understand your question. NIH funds research both extramurally and intramurally. Extramural research are the program announcements, RFAs, and so on, and that money goes to researchers outside NIH. Intramural research is done by people at NIH, like Dr. Leorey Saligan.

      Extramural funding applications for ME/CFS generally get reviewed by the CFS SEP. No SEP meeting equals no grant review, unless a researcher has managed to get the application assigned to a different study section. I don’t know for a fact, but I think it’s a safe assumption that applications submitted by ME/CFS researchers in the last six months are waiting for review. I don’t know how intramural funding is applied for and allocated.

      • Anonymous says:

        Jennie’s right in that researchers can apply for grants creatively; for example a study on pediatricME/ CFS could be submitted under a general program announcement studying disability in children since kids are certainly disabled by this illness. Or a grant could be submitted under a FM announcement if it compares patients with ME/CFS-only with ME/CFS+FM. (From what I know, Nancy Klimas got funding for some of her research by using money for a GWI grant by including a ME/CFS comparison group.) Some of most successful research groups are that way because they know how to play the grants game. However, the grant application might end up in a study section where the grant reviewers know little about CFS and thus may not give the application a good score.

        In terms of “earmarked” funding even though the NIH budget reports the estimated amounts spent for a year followed by the actual amount spent, I’m not sure ANY money is set aside specifically in plain program announcements. RFAs have money attached to them but not program announcements as I understand. Program announcements do state however the maximum that can be applied for.

        • Jennie Spotila says:

          Correct. Program announcements do not have set aside funding. RFAs do. However, even in an RFA there’s no guarantee the money will be spent. If the grant applications aren’t good enough, they won’t be funded.

          Anonymous makes a great point about the grant review. As many problems as there have been over the years with the CFS SEP, going to one of the other study sections could be riskier.

          • Claudia says:

            Thanks Jennie and Anonymous – you’ve both answered all my questions. This is a terrible financial position for this disease to be in, especially given the huge awareness wave it is currently riding following the release of the IOM report. This detailed information must make its way to congress.

  9. Lisa Petrison says:

    Thank you for looking into this and reporting on it.

  10. Anonymous says:

    The next SEP meeting will be on the afternoon of the 14th of April 2015 http://www.gpo.gov/fdsys/pkg/FR-2015-03-19/pdf/2015-06268.pdf

  11. Jim Ellsworth says:

    Gawd, the idea of digging into the intricacies of the grant approval process gives me the chills – I’d rather get my teeth drilled.

    Is it correct to say that there may be applications for the SEP to review at their next meeting? Is is correct to say that until an RFA is renewed there will be no applications to review at SEP meetings that take place after April 14?

    • Jennie Spotila says:

      The SEP will not meet if there are no applications to review. Applications can always be made even without an RFA or program announcement, but there will probably be less of them.

  12. kristy schell says:

    Jennie, you are amazing and completely invaluable to the ME/CFS community.

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