It’s June 2017 – the Advisory Committee to the Director of the NIH is in the middle of their 114th meeting to the NIH Director. Their task is:

“To make recommendations concerning program development, resource allocation, NIH administrative regulation and policy, and other specific or general aspects of NIH policy.” They also review and make recommendations on grant applications.  In short, they oversee what is going on at the NIH.

It’s a pretty heady committee: it’s made up of presidents of three universities, chiefs of hospital departments, directors of  academic centers, chairs of departments, even a president and CEO of a pharmaceutical company.  Sitting among them is “our own” Ian Lipkin, Director of the Center for Infection and Immunity.

The agenda for the two-day meeting included a smattering of different topics: there was a report on a universal flu vaccine the NIH is apparently working on, an update of the group working on probably the most important and certainly the most famous cell line ever established – the Henrietta Lacks (HeLa) cells, an update on 21st Century Cures, a report on the Opioid crisis, etc. And then tucked in on day two was NIND Director Koroshetz’ presentation.

Lipkin is third from the left on the stairs

Lipkin is third from the left on the stairs.

(Fun Fact: the award-winning book on Henrietta Lack’s famous cell line “The Immortal Life of Henrietta Lacks” was written by Rebecca Skloot, the daughter of ME/CFS patient and author Floyd Skloot.)

With its $1.6 billion dollar budget, the National Institute of Neurological Disorders and Stroke (NINDS) is huge; Koroshetz and it are responsible for understanding and curing diseases like multiple sclerosis, Alzheimer’s, Parkinson’s, stroke, neuropathic pain, etc.

During his talk, Koroshetz spoke on various NINDS initiatives including the Porter Neuroscience Research Center (which has brought 800 scientists together); NINDS’ progress on stroke, Parkinson’s, and multiple sclerosis; FDA approved drugs; its excellent grant application success rates (indicating that it’s got some hot researchers); a translational research program, etc.

Koroshetz finished up his presentation with a special focus on the NINDS work on four diseases: Parkinson’s ($129 million/funding), traumatic brain injury, Alzheimer’s ($790 million/funding), and…ME/CFS ($12-15 million/funding). It was a surprise to see Koroshetz touting the NIH’s small program on ME/CFS to some of the top officials associated with the NIH.

That was a surprise indeed. That’s called “getting the word out”. Koroshetz started off by stating that:

“Myalgic Encephalomyelitis and Chronic Fatigue Syndrome is an area that’s really been completely under-investigated across the country, and Francis [Collins] was really courageous and went out there and said that NIH is gonna change that.”

Koroshetz went on to say that ME/CFS is a pathological condition, and then turning to the committee, stated that “people are completely disabled for decades because of this terrible fatigue and inability to exercise”. Citing the “poor research environment out there”, Koroshetz talked about the research centers being formed and of their efforts to work with the community

 “which feels terribly ignored and quite angry over this over the last decades, but I think we’re making definite inroads there and getting the trust rebuilt.”

Thanks to The Solve ME/CFS Initiative for putting this video together:

That sparked some real trouble in one corner of the ME/CFS universe. It brought to mind a major figure of the ME/CFS community saying that no good deed goes unpunished.  Koroshetz’ comments could have been interpreted in several ways, and, in one corner, were met with scorn and dismay.

His comment that the community feels “terribly ignored and quite angry” was interpreted as an attempt to blame and to suggest that “we are the problem”; i.e. “You’re (the community is) angry because there is no funding, but there’s no funding because you are angry.”

I interpreted Dr. Koroshetz’ remarks in a different light, however. By starting off the discussion stating that ME/CFS has been “completely” underfunded, Koroshetz provided a justification for the community’s anger over the decades of low funding.

Koroshetz next did an amazing thing; in response to Dr. Lipkin’s assertion, he acknowledged that 3 or 4 centers is not nearly enough – that the field needs probably “20 centers”. Then, when he said the budget is going to have 10 or 20 times the money it has now, my jaw dropped open. Hearing the Director of NINDS state – before this august NIH advisory committee – that this disease, this oh-so-neglected disease, needs a vastly increased budget astonished me.

Lipkin Questions ME/CFS Research Center Funding 

It is imperative that members of the ME/CFS community push their representatives for more substantive support. Ian Lipkin

It was good, very good to have Dr. Lipkin. He’s a friend in a high place. Nobody knows how much help Lipkin has been or what happened to turn Francis Collins’ head. Was it XMRV, Lipkin, Ron Davis and Whitney’s story, Brian Vastag’s piece, Carol Head’s talk, the IOM report, or more likely, all these put together? However it happened, it’s good to have Ian Lipkin sitting at that table and speaking to Collins, Koroshetz and the other mucky-mucks at that meeting. There’s nothing like being in the room.

NIH research center budget chronic fatigue

Lipkin asserted that the budgets for research centers aren’t big enough.

Dr. Lipkin told me that he pressed the Research Center funding issue before and after Koroshetz’ presentation. During the presentation Lipkin cut to the chase during the discussion period stating, “I’m not as excited about the investment in ME/CFS”. It’s pretty clear now that the funding for the research centers is helpful and it’s a start, but it’s not adequate. Ron Davis has expressed concern, and David Systrom, who dearly wants to comprehensively study the disease, backed off from submitting a Centers grant because he deemed he could do better with individual grants. The reporting requirements, the need to provide indirect funding to the universities, the need to engage in a collaborative study – it all eats up money.  The reporting requirements have been described as better suited to a major research center.

This is probably what happens when you do a research centers grant by committee – everybody gets their piece (but perhaps not their money) and, by the time you’re done, it’s pretty unwieldy.

Lipkin, who submitted an application for a grant, basically warned the NIH not to expect too much. If anyone knows the ins and outs of a research center proposal, it’s probably Lipkin, whose lab, I was recently told, is the recipient of tens of millions of dollars of NIH funding a year.

Lipkin was polite but firm and did not pull any punches. He stated that by the time everything is accounted for, those $1.2 million grants will dwindle down to about $800,000 in actual research funding. That, he said, with a wry, rather painful grin, “is a challenge” and, “It’s far less than an ROI for each of the investigators involved.”

Lipkin asked if there was any chance that the funding for the Centers might be increased. Koroshetz said there’s “always a chance” (i.e. there’s probably no chance…) and that the idea was that the initial Centers would provide a seed which would spark more grant applications from the ME/CFS research community or the funding of more Centers.

So Why Don’t We Have 20 Research Centers and $100 million in Funding?

More to the point – if Koroshetz believes we should have 20 centers and 10x more funding, why don’t we have more centers and $100 million in funding? Probably for a couple of reasons.  First, it’s politically probably impossible. The huge increase in funding Alzheimer’s got last year was the result of years of effort focused on gaining consensus and building allies. By the time a big chunk of money came around, the Alzheimer’s group was ready to nab it.

I’m getting the idea that the NIH doesn’t really run by fiat. It runs by enrollment and we had a difficult enough time enrolling the Institutes that are purportedly interested in us in coughing up any money for the research centers. Koroshetz gave a clue to the difficulty in getting that through earlier when he said:

“Francis [Collins] was really courageous and went out there and said that NIH is gonna change that” ,

The idea that Dr. Collins “courageously” acted to support ME/CFS was ridiculed in the face of the courage that those who have ME/CFS exhibit in their daily lives. That’s understandable, given the suffering so many endure and the need out there, but consider that the NIH’s disregard for ME/CFS over the decades indicates there is probably very little to no agreement on Collins’ actions.

We pretty much know that, given the year or so it took Vicky Whittemore to put together this small research center grant. Bucking your peers is never easy. It does, in fact, take courage for an NIH Director or NINDS Director to publicly stand up and say that a disease that the NIH has held in disdain for so long is a real and serious one. More than one NIH official probably feels both Collins and Koroshetz have a screw loose with ME/CFS, and are sharpening their knives in order to prove it. Koroshetz appears to be leery of funding clinical trials because he believes that one major mis-step could set the field back for decades.

In any case, if Dr. Koroshetz applauds Dr. Collins for being “courageous” in front of the NIH Advisory Council, it’s because from where he sits, what Collins did is a courageous act. Carol Head of The Solve ME/CFS Initiative acknowledged that when she cited NIH’s “brutal bureaucracy and tough internal politics”, and noted that Dr. Koroshetz’ support for ME/CFS didn’t win him any points with his peers.

Passionate Pragmatist: Carol Head and the Fight for ME/CFS Equality: The SMCI Pt. I

The NIH also clearly doesn’t want to flood what they regard as an immature field with too much money – possibly because, again, the knives are out for ME/CFS (or any program that doesn’t have strong standing. Ron Davis  – who’s not particularly enamored with past ME/CFS research – agrees with building the field gradually.  My guess, though, is that he and the NIH are far apart on what constitutes “too much money”.)

In any case, Davis, Lipkin, Klimas and others are entering the Research Center competition with eyes wide open: they know the amount provided is insufficient, but hope to produce enough results to quickly build on the funding. They’ll have a toehold in and hope to be able to expand it.

We should be clear, though, that the main source of funding at the NIH is through researcher-initiated grant applications – not Requests for Applications grants (ME/CFS research centers grants) or intramural studies. Until researchers start showing up and applying for ME/CFS research grants, this field is going to remain severely underfunded.

Research Center Announcement

Depending on who you talk to, the winning Research Centers will either be announced very soon (like perhaps today) or at the very latest by the end of September. Each research center has received its score and its summary analysis. The rumor I’m hearing is that the scores aren’t particularly high.

As Jennie Spotila pointed out, the scores are just the beginning; next, program recommendations based on the scores and other factors will go to the Institute Advisory Councils, which will then provide recommendations to the Institute Director, who makes the ultimate decision. Since ten Institutes provided funding, it’s not clear who will make the ultimate decision, but it may come down to the Directors of the Institutes who put the most money in: NIAID and NINDS.

But we have a long way to go at the NIH. We don’t have a robust research program, the research centers are small and underfunded, the intramural study, while quite exciting, is on a very slow road to completion, and we’re not in an Institute.

We do have a foot in the door, though. The Intramural Study is designed to build a foundation for major increases in funding.  Funding for the research centers is inadequate but will hopefully grow over time.  Meanwhile, ME/CFS researchers simply have to start applying for research grants. The ME/CFS grant review panel has been almost completely filled by ME/CFS experts for several years now, but the number of applications is absolutely abysmal. We’re not going to get where we want to be until individual researchers actually start applying for funding.

One of the benefits of having such an excellent response to the Research Centers grant initiative is that the seven applicants who do not win should have upwards of 15 grant applications ready to submit. (That’s about how many applications are received yearly.)  Depending on which centers win, applications from Unutmaz, Cook, Davis, Klimas, Lipkin, Lombardi, et. al, should be landing on grant reviewers’ desks next year. That should provide a temporary but significant boost – a boost that is sorely needed: the number of ME/CFS grant applications submitted to the NIH is simply dismal.

We clearly have to keep the heat on. That means acknowledging the help we are finally getting (keeping our allies close), being skillful in our advocacy, and pushing to get what we and this disease deserve. It’s great, finally, to have a professional advocate working for us. Just last month, Emily Taylor of the SMCI got the National Organization of Women to back more funding for ME/CFS, and she has big plans in store.

A Professional Advocate for ME/CFS (Finally!) – the SMCI’s Emily Taylor

Given that, it’s very nice to know that Dr. Koroshetz, Emily and the ME/CFS community are thinking along the same lines: many more research centers and ten times as much funding are needed. Let’s help him get us there.


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