Reprinted with the kind permission of Cort Johnson and Health Rising.
By Cort Johnson
“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 answers. We 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 NIH is looking to the future in this conference, but what future? The title of the conference is “Accelerating Research”. The NIH has certainly accelerated research in ME/CFS – our funding is about double what it was 5 years ago – but acceleration by itself does not mean a field is strong or able to fulfill a disease’s needs.
In 2015 Francis Collins said, “we are going to ramp this up” and that the NIH was now serious about ME/CFS. He also acknowledged the NIH’s historical neglect of the field.
“Given the seriousness of the condition, I don’t think we have focused enough of our attention on this” Collins
It’s important to note just how bad things were prior to the NIH’s re-invigoration of ME/CFS research in 2015, in order to put the NIH’s next actions in context. We were at such a low ebb – an almost historically low ebb in 2015 – that any increase was going to seem significant.
If my figures are correct the five million dollars in funding ME/CFS received in 2014 was, adjusted for inflation, the lowest amount of funding it had received from the NIH in over twenty years. ME/CFS was receiving more funding in 1991 – just a couple of years after the NIH started funding it – than it was in 2014. We were in a seriously deep hole – even by our horrifically low standards. (We hit an even lower level in 2007 and 2008).
Thankfully, funding did triple in 2016 ($16 million). That was the most funding – adjusted for inflation – that this disease has ever received but not by much. It was only about $2,000 more in 1993 dollars than our prior peak ($8,000) on that date.
Since 2016 ME/CFS funding has declined by almost 15%. The NIH estimates that it will spend $14 million on ME/CFS this year, which adjusted for inflation, is just a bit above what the NIH was spending on this disease in 1994.
So yes, Collins and the NIH have accelerated research funding, but only to a level of neglect that the ME/CFS field is very familiar with.
Returning a field to a former level of abject neglect does not denote serious action. It looks like more of the same. Even with Collins re-invigoration of ME/CFS research, the NIH really hasn’t budged an inch in 20 years.
In one important way the situation is actually worse than it’s ever been. The number of individual research applications for ME/CFS grants appears to have declined to record lows. (Part of that could be because researchers in the research centers aren’t applying for grants.) That means we’re failing dramatically at getting the most important and biggest source of NIH funding.
Another telling figure is the proportion of the NIH’s budget that it allocates to ME/CFS every year. Even though the NIH is allocating more money to ME/CFS this year than in years past it is actually allocating a smaller percentage of its budget to ME/CFS than it was from around 1992-1998. Again, this suggests that while funding has increased it has not increased beyond the historical norms of a disease which Collins agrees has been neglected. ME/CFS was being neglected then and it is being neglected now.
The lies embedded in the “accelerating research” phrase are two fold. They include the unspoken suggestion that the NIH is doing something unusually meaningful and that it’s currently accelerating research. It’s true that NIH did accelerate research in 2016, but this is 2019, research funding has fallen and grant applications are probably at historical lows. The NIH has done nothing about either of these. The acceleration, then, is gone and the NIH is now basically standing pat.
Tough Institution to Change
“He (Francis Collins) knows what he has to do. It’s just very hard to do it.” Ron Davis. Nov 2015
When Francis Collins committed to reinvigorating ME/CFS research, we probably should have listened more closely to two of the old hands in the field. Ron Davis said he believed Francis Collins was sincere when he intended to reinvigorate the field but that he had a “hard job” ahead of him. Ian Lipkin said, thanks for all the nice words – but show me the money; he knew those promises were all too easy to make and all too difficult to keep.
“Is it good news for us? Potentially yes…. The function is the budget. Ian Lipkin – reacting to the reinvigoration announcement in Nov 2015
The fact that it took Vicky Whittemore so long to wring so the same amount of money (again, adjusted for inflation) that Vivian Pinn in the Office of Research into Women’s Health did in 2006 from the Trans-NIH Working Group suggested that Working Group may have even hardened itself against ME/CFS over time. When you consider that Whittemore had the public support of the Director of the NIH, the Director of NINDS, the Institute of Medicine report and the Pathways to Prevention report to support her ask, it’s remarkable how stingy the Working Group was.
That told us something about the environment Whittemore is working in. Koroshetz’s claim that Collins public stand in support of ME/CFS was courageous evoked ridicule in some quarters, but the fact that he made it indicated something.
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Working Group Woes
The Working Group (WG) bashing aside, it should be acknowledged that the WG probably never had a chance. It didn’t make sense twenty years ago and it doesn’t make sense now that the Institutes represented in the group would pony up serious funds for a disease they’re not responsible for. It tells you something that Working Group – the group responsible for moving ME/CFS forward at the NIH – allowed the 2015 Program Announcement to lapse (PA’s are no longer being done now), didn’t appear to participate in the Fatigue Initiative Whittemore/Koroshetz worked on, and isn’t participating in a panel tasked with providing a way to move this field forward.
A Stuck NIH
The NIH has been treating this disease as an afterthought for over 30 years, is still not serious about it, and could easily continue this way for another twenty or thirty or years.
My guess is that won’t happen: I believe that one or more of our superb researchers is going to come up with a breakthrough that finally captures the NIH’s interest. I think the Nath Intramural study will open doors. Plus medical technology, thankfully, is moving on at a blistering pace. Even if our current crop of researchers doesn’t have more money than those in the past, they have far more powerful tools to play with. We’re more likely to have a fundamental discovery now than at any time in the past.
Still, the environment of disinterest and neglect that continues to pervade the NIH means that any discovery will take exponentially more time to make a difference.
It should be noted that we’re not alone. The culture of neglect that plagues ME/CFS is experienced by every disease it is allied with. Diseases like ME/CFS, migraine, fibromyalgia, POTS, and IBS which effect large numbers of people, cause pain and fatigue, are largely invisible (don’t produce highly visible signs), don’t produce the mortality rates associated with diseases like heart disease and multiple sclerosis, and effect more women than men – are all being vastly underfunded at the NIH.
Giving Up Not an Option
It appears that we have a few individuals (Whittemore, Koroshetz, Collins) pulling for us in an infrastructure that is pulling the other way. Despite the continuing disappointment that the NIH is, taking the easy route out – giving up or retreating into upset and resignation – is not an option if we want to break the back of this disease in a time frame that’s acceptable to any of us.
Plainly put, there’s no substitute for the NIH. The possibilities that it – with it’s immense funding capabilities – provides are simply too large for us to turn away from it.
Our goal must be to make the tasks of our allies in the NIH easier by giving them the ammunition they need to wrench the NIH out of its rut. That means getting Congress to push the NIH. The good news is that we have more effective advocacy than at any time in the past.
We have gathered more allies on the Hill than we ever have before. The Solve ME/CFS Initiative and ME Action are more active than ever before. (Check out ME Action’s Facebook feed if you have any doubt how incredibly active the ME/CFS community is.) Democrats, now in control of the House, are believed to be more open to pushing the NIH on health matters. Plus, the NIH’s budget has grown significantly over the past five years. The money is there – we just have to get at it.
In the meantime we should give ourselves a pat on the back. We’ve done something that no other disease of our ilk or indeed few diseases have done – we’ve more than doubled our funding in a short period of time. ME/CFS now receives substantially more money per patient per year than migraine and fibromyalgia. That’s a tribute to our effective advocacy.
Helping the NIH Help Itself
While the inaction at the NIH is a source of immense frustration and anger, please consider that the kind of people who choose to work at the National Institutes of Health are probably, by and large, people who are or at least were committed to doing good works. It’s possible, of course, that the bureaucracy at the NIH has leached that desire out of them. They work in a system, after all, which allows diseases that affect millions of people to be neglected.
Whatever justifications the Institutes or individuals there use for not funding ME/CFS and similar diseases, the fact remains – and they know this – that millions of ill people are being neglected. That fact must drag on those who still remember why they entered the NIH in the first place. I submit that deep down, no matter how well they seem to have covered it up, the fact that so many are not being cared for, must, at some level, must bother everyone.
The NIH was not created to be an Institute that awards winners and losers. It was created to safeguard the health of this country. Somewhere along the way it went astray.
When we push for the NIH to support ME/CFS and similar diseases we help it to be more like the Institute it was intended to be. I submit that when we succeed, the NIH succeeds, and the people that work there will breath a sign of relief knowing that they’re not leaving a huge number of people out in the cold. By helping ourselves we’re helping them and making a NIH stronger, more effective, more compassionate institution – the kind of institution its founders surely intended it to be.
Bringing About the End of ME/CFS as Quickly as Possible
Vicky Whittemore and Walter Koroshetz have created a new group (which includes Jen Brea)that’s tasked with producing a report, due this fall, on how to move ME/CFS forward at the NIH.
That report, as the IOM report was, will likely provide another critical decision point for us. It’s a time we’ll want to bring everything we can to bear on the NIH to make it’s recommendations a reality. That means politicians slamming the NIH with requests that it honor the reports recommendations. That starts now – with our enrolling politicians who can provide critical help in the fall.
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About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on myalgic encephalomyelitis, chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.