“We’re saying that ME/CFS is a program priority now…Give us a chance to prove we’re serious – because we are.” Francis Collins

No one could have expected this. The NIH was supposed to reinvigorate ME/CFS research, not watch a vital aspect of it go down the tubes.  According to Freedom of Information Act requests (FOIA’s), fewer ME/CFS researchers applied for the fewest individual grants in 2017 (n=8) and 2018 (n=8) in memory.

The NIH has failed to re-invigorate or even stop the decline in the most important source of funding – individual research grant applications

The individual research grant application problem dwarfs everything. Three small NIH-funded research centers cannot and aren’t meant to carry the load for a disease. The Intramural Study is promising, but is going to take years to complete – and it will need interested researchers to follow up on its findings.

“It is very important to know that the vast majority of NIH funding goes to investigator-initiated grants that be submitted at any time.” Vicky Whittemore

The NIH has a serious problem on its hands. Four years after it said it was committed to reinvigorating this disease, the individual grant applications that basically run the show over there not only aren’t increasing – they’re actually sinking fast.  Since most of the NIH’s budget goes to individual-initiated grant applications, that’s a big deal. No disease program can be successful at the NIH without a steady stream of researchers submitting applications.

Grant Applications for ME/CFS

  • 2011 – 20
  • 2012 – 30
  • 2013 – 16
  • 2014 – 18
  • 2015 – 26
  • 2016 – 13
  • 2017 – 8
  • 2018 – 8

It should be noted that the NIH has always  complained about the lack of grant applications. They complained about the few applications they were receiving back in 2011 when ME/CFS researchers submitted 20 of them, and in 2015 when 26 researchers applied.

Have the Research Centers Hurt the Individual Grant Application Rates?

The Research Center applications in 2017 were certainly expected to tie up some of our best researchers and therefore produce a decline in individual research applications that year. We can’t, however, blame the Research Centers for the decline we’ve seen since then.

At the very most the three winning Research Centers tied up nine potential individual applications.  Adding 9 more applications from 2017-2018 – a very unlikely scenario – still leaves us with a still substantial decline in application rates.

It’s quite unrealistic to assume that the nine projects developed for the Research Centers grant applications would have been turned into individual grant applications. My guess is that in the normal course of events only 3 or 4 would have been submitted leaving the situation virtually unchanged, and indicating that the bad old days really are looking like the good old days now.

A Stark Reality

“We recognize and empathize with the suffering experienced by people with ME/CFS and their frustration that so little is known and so little research has been done to find answersWe aim to change that. The NIH is committed to unraveling the underlying biologic cause(s) of ME/CFS as swiftly as possible.” Collins and Koroshetz

The one good thing that may come out of this mess is how utterly stark the problem is. Now that the bottom has officially fallen out, it’ll be interesting to see how the NIH responds.

Almost four years after Dr. Collins’s promise that the NIH was finally going to get serious about ME/CFS, it’s clear that what they’ve done isn’t working – which is really no surprise.  The NIH, after all, immediately broke Collins’s promise: it has never come close to being serious about this disease.

ME/CFS funding NIH

The recent boost in NIH funding for ME/CFS wasn’t much of boost, historically speaking, at all. The NIH was spending almost as much money on ME/CFS in the early nineties (red-line -spending adjusted for inflation) as it is today.

The Lie in the NIH’s “Accelerating Research on ME/CFS” Slogan

The NIH did create three small research centers and fund one intramural study, but in doing so committed about the same amount of money into ME/CFS that it had in the past. It assured us that a Working Group, which had never been effective before, was somehow going to change its spots and turn into an ME/CFS research generating machine.  Without dealing with the individual research grant problem it suggested – without ever telling us how – that that problem was going to resolve itself.

“Serious” Effort Needed

The NIH has failed so miserably thus far at invigorating this field that it must – if is serious at all about ME/CFS – rethink its approach. The beauty of the collapse in grant applications is that it’s so total. There’s no grey area, no promising signs – it’s a complete and utter failure.

The NIH has to grapple with the fact that its preferred way of working with ME/CFS – the Trans-NIH Working Work – is an abysmal failure.  When over half the Institutes in a Working Group can’t contribute even a minimum amount for the group’s one big initiative, something is seriously wrong.  (Not having the buck stop anywhere is a sure recipe for indolence and inattention, and it has been just that. )

(Check out the graph above. A precipitous decline in ME/CFS funding began 2001 when NIAID kicked out ME/CFS, and the Trans-NIH Working Group took over responsibility for ME/CFS.  It hit it’s nadir in 2007/2008, jumped up for a few years when the RFA money came in, then declined again.)

Strategic Plan

It’s now abundantly clear that one funded grant opportunity (RFA) and a conference every ten years is not enough to put this field on a sustainable trajectory. If the NIH wants to succeed, it has to create a strategic plan that, step by step, methodically builds this field over time. That includes funding RFA’s, providing regular reports that assess performance metrics and benchmarks, providing a home for ME/CFS, etc.

The NINDS panel that Vicky Whittemore and Walter Koroshetz put together to assess the way forward may provide that. It is due in the fall.

If the NIH doesn’t produce a coherent, long-term strategic plain, we will surely be back doing this again and again and again.

In the meantime, we should recognize that the NIH is designed to respond to researcher interest – not disease burden or need.  It actually appears structurally designed (probably inadvertently) to make it difficult for controversial diseases – particularly with diseases like ME/CFS, which lack a clear pathophysiology – to get a leg up.

This isn’t easy for them either. (Ron Davis said it wasn’t going to be easy.)  There’s much we don’t know about the NIH but the idea that someone there is going to suddenly plunk $50 million down on the table for ME/CFS is apparently harder than we know.  It took Vicky Whittemore over a year to get three small research centers (and one data center) funded – and that was with Francis Collins’s public support.

Two-Pronged Attack To Produce Major Change

We have the ability, though, to force the NIH to give up its almost complete reliance on researcher interest and fund ME/CFS research based on the need that is present.  One way to do that is by telling our story to the people whose job is to look after the American people – our Congressmen and women.  They have the power to force the NIH to change its ways.

change at the NIH

The NINDS report plus support from Congress will give us an opportunity to push the NIH to finally get serious about ME/CFS

The NIH also has internal mechanisms that can help and we have supporters there. The Institute of Medicine (IOM) and Pathways to Prevention (P2P) reports gave Francis Collins the foundation to publicly state this disease has been neglected and needs substantially more funding. That gave us a substantial boost, which then appears to have foundered on the structural constraints that were still present; namely our reliance on the Working Group.

The NINDS panel report due in the fall should give us substantial ammunition to push for major changes. Coupling that report with strong Congressional support could give us the wedge we need to finally produce major and lasting structural changes in the NIH’s approach to ME/CFS.

Our next opportunity to enroll Congress in supporting our efforts to produce meaningful change at the NIH will come in a couple of weeks on Advocacy Day – easily the biggest one yet.

  • Coming up next – a chat with the SMCI’s Advocacy Director – Emily Taylor.


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