No Facts for YOU!

The NIH funding argument is a broken record: Advocates and researchers say, “We want more funding!” NIH replies, “We need more applications!” And advocates and researchers reply, “Your review panel is made up of dentists!”

Back and forth. Back and forth. Dr. Nancy Klimas said at the April FDA meeting that only 1 in 8 of her applications to NIH for ME/CFS research are approved – a 12.5% success rate. In contrast, Dr. Susan Maier (NIH) reported to the CFS Advisory Committee that the 2012 acceptance rate was 18%. To my knowledge, she has not presented data on the historical acceptance rates, but she said at the May 2013 CFSAC meeting that she does have those numbers. Dr. Maier literally begged the CFSAC audience to increase the numbers of applications. Dr. Mary Ann Fletcher repeated the complaint that grants are reviewed by the wrong people. Back and forth. Back and forth.

What truly bugs the crap out of me about this argument is that these are factual questions with factual answers. The historical acceptance rate for ME/CFS grants is something that can be measured, as can the number of applications. Why aren’t we having the discussion based on data? Multiple researchers have said on multiple occasions that there is no point in submitting an application for ME/CFS research to NIH because the CFS Special Emphasis Panel that reviews these applications is not staffed by ME/CFS experts. But again, this is a factual question! Who serves on the CFS Special Emphasis Panels? How many of them are ME/CFS experts? Instead of repeating perceptions, let’s examine the FACTS. I have attempted to do just that, but have been thwarted by NIH policy. It’s time to tell you that story.

Last year, I exchanged multiple emails with Dr. Susan Maier and Don Luckett at NIH in an attempt to get the CFS SEP rosters. Some of those rosters were posted on the Center for Scientific Review website, but most were not. On October 19, 2012, Mr. Luckett emailed me:

We no longer post this roster online due to threats some previous panel reviewers have received. Anyone who wishes to view the roster is advised to submit a Freedom of Information Act (FOIA) request to the NIH FOIA office.

Based on that advice, I filed a FOIA request on November 1, 2012 requesting 1) the complete membership rosters for each meeting or other activity of the CFS SEP for the last ten years and 2) documentation in NIH’s possession relating to threats or alleged threats made against one or more member of the CFS SEP in the last 10 years. My intent was to evaluate the rosters to see how many experts participate, and to understand the nature of these alleged threats. Many readers are no doubt familiar with allegations of threats against certain researchers in the UK, so I think it is important to establish the facts behind the allegations – especially since these allegations are the stated reason for requiring a FOIA request for the SEP rosters.

On February 11, 2013, the NIH responded to my request. They found 94 pages of records responsive to the two requests, but they only sent me four redacted pages. The remaining 90 pages were withheld in their entirety under the FOIA exception for “clearly unwarranted invasion of personal privacy.” Needless to say, I appealed this decision on March 7, 2013. The basis of my appeal is:

The only way for the public to know whether the CFS SEP is staffed with scientists with the appropriate expertise is for those rosters to be public, just as they are for the panels in other areas of research. It is no invasion of privacy to disclose the names of the individuals appointed to this advisory committee. I am not requesting anything that is not available to the public in the case of hundreds of other panels.

Furthermore, there is a significant public interest in documents related to the alleged threats made against previous panel members. Specifically, I was told that these alleged threats were the reason that the panel rosters were no longer available. NIH cannot refuse to release the rosters and then also refuse to release documents that may or may not support that policy decision. It is entirely possible that these alleged threats are merely rumor and hearsay, but there is no way for the public to know if no information is released. Given that the alleged threats are being used as the justification for withholding information that would otherwise be available, and that up until a few months ago was available, the public benefit of accountability and openness clearly outweighs the small potential harm of disclosing these documents.

I am not requesting anything unusual. Review committee rosters at NIH are public. You can go on the CSR website and see the names and office addresses for hundreds of advisory committee members across many disease areas. I’m not requesting special treatment – I am asking for information that is available to other interested members of the public. Instead, not only am I prevented from reviewing the rosters, I am prevented from seeing the evidence that is being used as the basis for denying me the rosters.

As a result, we cannot have a fact-based conversation about the CFS SEP. Is it populated with dentists and non-experts? Or has the composition of the SEP improved over the years? Knowing these facts are critical to a productive dialogue about whether it’s worth the effort for ME/CFS researchers to apply for funding. And because we are denied access to these facts, we are stuck in the back and forth argument of whether more applications will lead to more money. In trying to protect the privacy of reviewers, NIH is perpetuating the perception that ME/CFS grants are reviewed by unqualified scientists.

I am still awaiting the NIH’s response to my appeal.

Updated June 7, 2013: Several people have pointed out that the May 2013 SEP roster is available on the CSR website. This makes the denial of my FOIA request even more ludicrous, and I will be updating my appeal accordingly.

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14 Responses to No Facts for YOU!

  1. Sasha says:

    Very interesting. Thanks for all your hard work on this, Jennie.

    Is there a way of moving things forward by bypassing the difficulties with this line of inquiry and simply asking for a list showing the areas of expertise of each committee member, rather than their names, at least in the short term?

    I think Dr Klimas (?) has said that her success rate in getting (NIH?) funding for her other (GWI? HIV?) work is much higher than her NIH success rate with ME/CFS. Would it be possible to survey those researchers known to have submitted ME/CFS research proposals to the NIH and ask for their NIH success rates in ME/CFS and their other specialities (since almost all presumably don’t survive on ME/CFS research alone)? If they’re getting funded at much higher rates for their other work, it strongly indicates a problem with the panel rather than the proposals.

    • Jennie Spotila says:

      Good ideas, Sasha. I think it would be great if IACFS/ME could gather information from their membership. Even just knowing how many grants members are submitting would be helpful.

  2. Heidi says:

    The obvious hypothesis would be that there IS NO CFS SEP. Did you find evidence that it actually exists or has any members at all?

    • Jennie Spotila says:

      I think it does exist because I have seen a few rosters. In addition, in denying my request, NIH said they found many pages of records responsive to the roster request – so the rosters exist. They just won’t give them to me.

  3. Katrina Berne says:

    Thank you, Jennie. You are a true crusader. This situation is appalling.

    • Jennie Spotila says:

      Actually, I think IACFS/ME is in the best position to do this by surveying their membership. I’ve spoken to one of their Board members about the general idea, but their resources are really stretched thin right now. I’ve also spoken to a CFSAC member about the kind of information they need to diagnose this problem at NIH.

  4. Sasha says:

    Thanks, Jennie. This is such a major issue that I think it should be a priority. A lot of our problems would go away if the NIH funded ME/CFS research at a rate even remotely commensurate with funding for diseases of comparable severity and prevalance so identifying what the stumbling block really is, is crucial.

  5. Anne Boyd says:

    There might be a third party that could step in and help IACFSME conduct the survey, perhaps with both money and legwork. It doesn’t actually seem too hard to conduct a SurveyMonkey survey, or very expensive (in fact there is a limited survey membership you can do for free, but limited to 10 questions and 100 surveyees. How many members does the IACFSME have?)

    I think the trickiest bit would be designing the survey itself – which questions to ask, how much it’s reasonable to ask researchers to disclose (even if the responses are made anonymous, what information can researchers give without having to take time to go and dig through their files…etc. Creating that survey would take the time of knowledgeable people.

  6. LC says:

    Here’s one idea for those interested in getting at the NIH data: write/ call your Congress members and ask that their offices write a letter to Dr. Francis Collins and Dr. Susan Maier for the data and to make it publicly available. As citizens, we pay Congress members and staff to work for US and this is part of their duties — helping citizens navigate the federal system. Congress members and offices asking for information usually get their requests expedited and they can bypass laws we can’t if we write as solely citizens.

    I will be visiting my Congress member to talk to them about CFS and I will be asking them about this. A key point to remember is that you want to keep your messages concise, sweet, and short. 3 take-aways and say 3 requests. Another key — recognize it may take several follow-ups to get something done but you can do this from home by phone, e-mail, Skype.

  7. Sasha says:

    That’s a good point that Anne makes – it would take the time of knowledgeable people to be well-designed enough to be taken seriously but of course, the committee is made up of knowledgeable scientists who want this question answered! They will know the key issues and therefore what questions should be put in the survey. Those questions could then be handed over to a third party to run the survey if there were concerns about researchers knowing other researchers’ results.

    What about proposing this to Dr Mary-Anne Fletcher, who was pressing the committee on exactly this issue?

  8. Joe Landson says:

    Sideways. We can study ME/CFS by researching its constituent parts, in immunology, endocrinology, wherever. Leave the ME/CFS terms out of it. If the system won’t help us, we can bypass it, and get related research approved through usual channels. For example, since it’s pretty clear the mitochondria are involved in this illness, mitochondrial work can and does go forward, with or without our acronym attached.

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