NIH: Passing ME/CFS Over Again

NIH will (in its own mind anyway) be showcasing ME/CFS at the P2P Workshop next week. But ME/CFS research at NIH is caught in a never-ending cycle of being passed over in every way that matters.

At its June 2014 meeting, the CFS Advisory Committee recommended that NIH create and maintain a data sharing platform for ME/CFS research. Their reasoning was that such a platform would “greatly accelerate research discovery” and foster “opportunities for new scientists to enter the field.” CFSAC wasn’t suggesting starting something from scratch. A centralized data platform already exists, and its architecture could be readily adapted to serve ME/CFS.

That existing platform is NDAR, the National Database for Autism Research. I wrote about NDAR several months ago. Everything is already in place, and as we’re starting to see in ME/CFS research, big data is not only helpful, it is essential.

But NIH said no. Why? Because it would be “cost prohibitive in light of the small number of researchers,” and because the cost of such a database “would significantly reduce funds available for funding research on ME/CFS.” The circular reasoning could make you dizzy. ME/CFS doesn’t have enough researchers, so CFSAC proposes using an existing centralized data platform to help attract new researchers. NIH says no, because we don’t have enough researchers.

It’s not that NIH doesn’t want to expand NDAR. They actually just did. NDAR is now the NIH/NIMH Data Repositories. Three other repositories have been folded in, and grants funded by the National Institute of Mental Health will carry an expectation of data sharing. The same will be true for research funded under the Research Domain Criteria Database. Now, there are powerful arguments for why ME/CFS does not belong in NIMH, and would be better housed at the National Institute for Neurological Disorders and Stroke (NINDS). But NIMH covers autism and Alzheimer’s, and also efforts like the BRAIN initiative, so the boundary of “mental health” may not be what it once was. Given the growth and success of NDAR, it seems likely that expansion of the data platform will continue and may reach further into the neurological realm.

It’s also not the case that NIH doesn’t understand the power of big data. They just invested $32 million to increase the utility of big data. These grants will create 12 centers to address specific data challenges. It is part of NIH’s Big Data to Knowledge (BD2K) initiative, which is projected to have an investment of more than $600 million through 2020. That funding comes from across NIH, and the initiative seems perfectly suited for ME/CFS research. Can you imagine what we could do with the Open Medicine Foundation, Chronic Fatigue Initiative, Solve CFS Biobank and CDC multisite data – all aggregated and accessible to researchers?

Let’s be crystal clear. The data platform is there. The funding is there. But ME/CFS? It’s not there.


It’s possible that ME/CFS researchers are not applying for funding through the BRAIN or BD2K opportunities, or that they’ve applied and been denied. It’s possible they don’t know about these opportunities. It’s possible that Dr. Susan Maier and the Trans-NIH ME/CFS Working Group have not served as the conduit that they should, connecting initiatives like these with the researchers who could leverage them. It’s possible that ME/CFS big data is not actually “big enough” compared to other areas. And it’s possible that NIH doesn’t think ME/CFS is important enough to be included in these cutting edge initiatives.

Regardless of the reason(s) or complexity, the end result is this: no access to the existing data platform at NIH and no funding to grow our data initiatives. It feels like ME/CFS is a windup toy that just keeps running into the wall, over and over and over.

There are plenty of ways and plenty of opportunities to change this. Someone – ANYONE – change something! Otherwise, we will just get passed over, passed over, passed over.

This entry was posted in Advocacy, Research and tagged , , , , , , , , , , . Bookmark the permalink.

7 Responses to NIH: Passing ME/CFS Over Again

  1. Russell Fleming says:

    Time for your ME/CFS non-profits to collaborate formally on projects such as this and take vital initiatives from the NIH. I don’t think these kind of things will ever be done otherwise. Same with Biobanks. Why not share resources and really enagage with patients across the USA and elsewhere. Infrastructure is vital is we are truly to establish ourselves as a recognised disease and increase research… (now I’ve run out of words and need a rest!).

  2. cort says:

    What funds for ME/CFS research? Are they kidding? You mean that 1/100th or one percent or whatever it is of their budget they devote to ME/CFS research? That’s a big hit for the NIH!

    I’m sure they’re right that there isn’t enough activity to warrant it in their eyes. It’s the NIH’s ME/CFS catch 22 – they won’t fund ME/CFS – so there’s little activity – so they won’t fund ME/CFS projects like this.

    I imagine that Lipkin would have been happy to include his data in that database – if his grant had been approved.

    They know what works – an RFA grant worked to attract grant applications in 2003 and it would work this to do even better now. All they need to do is produce and the activity will be there…

    They know exactly what this field needs…They’re just not willing to do it.

    • Jennie Spotila says:


      • Cort says:

        I was so frustrated I couldn’t get my words out 🙂

        I meant that the Neuroimmune grant package (RFA) in the mid 2000’s attracted plenty of responses. It was supposed to help jumpstart the field and it did. Now here we are over ten years later with much more research under our belts and a tier of top-flight researchers finally interested in doing research. An Neuroimmune RFA done now would get a huge response….

        That’s how you get a field going. You don’t do it with program announcements. You don’t do it by trying to shuntME/CFS researchers into other fields that have money. You do it by spending some money and you don’t need to spend a lot of it – you just need to spend some…

  3. Chris says:

    Jennie, a great little piece (based on a lot of information) that packs a real punch. Somehow Collins’ attention has to be focused on what is going on–and even more what is not going on–in his vast domains. And of course if he already knows, we will know better just what is -and is not–going on, and why. I wonder if that offer from the publicity company willing to try to make us more visible might have a partial answer? Chris

  4. NA Wright says:

    The challenge with any vicious circle reasoning is to be able to identify where on the wheel a brake can effectively be applied. In isolation each of the NIH objections to making changes appear to be reasonable; each objection may be arguable but in itself is not logically perverse. And while one can argue each objection the absence of any killer error on the NIH’s part, each becomes a perspective issue not a matter of fundamental principle – basically there doesn’t look to be anywhere to shove a stake between the spokes and bring the wheel to a stop.

    In a case of self sustaining logic like this, to evoke change the wheel as a whole has to be challenged rather than any one part of it. One question that might be asked is why ME/CFS research is treated as explicitly isolated within its own frame of reference, rather than as a multifactoral research challenge that bridges multiple disciplines ? The argument might then be, not that the presently limited number of ME/CFS researchers need a data sharing platform but that ALL health research, without limitation to its immediate focus, needs access to an ME/CFS platform so as to encourage new perspectives on the problem of ME/CFS. And ME/CFS patients are not immune to other diseases and there is an undoubted need for data sharing on dealing with comorbidities, not just because ME/CFS patients currently frequently get inappropriately treated but critically because synergies and serendipities are essential for scientific progress – think Fluge & Mella and Rituximab.

    My take is that the NIH is not especially at fault in its detailed arguments, rather its failing is that, at least in respect of ME/CFS, it is pursuing an approach to research that is decades out of date. Even were the ME/CFS budget jacked up by orders of magnitude, spot funding isolated institutions through year on year accountancy isn’t going to produce major breakthroughs. What is required is broad interest from across the medical research establishment, it needs previously uninvolved people suggesting new approaches, new and repurposed research applications and most of all, the sharing of ideas. The NIH could lead on this without having to find vast amounts of new money. That perhaps is where the vicious circle could be opened up. Though I’m guessing the NIH would reply “IOM/P2P” !

    • Jennie Spotila says:

      I think the P2P agenda shows how out of date NIH’s thinking is, and I just hope we can count on the experts to point that out!

Comments are closed.