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.