The NIH recently found a way to kick the chronic fatigue syndrome (ME/CFS) community in the teeth again. Jack Reacher couldn’t have done it any better. You have to give it to the NIH: they’re nothing if not masters of disappointment.

NIH Promise

Francis Collins promised a long-neglected ME/CFS community that the NIH would finally get serious about the disease. He was wrong.

Almost five years ago the NIH – largely in response to the Institute of Medicine (IOM) report – funded its first ME/CFS research centers in over 15 years, and started on an in-depth intramural study under the direction of Avindra Nath.

It seemed like the NIH was indeed turning over a new leaf. Director Collins actually agreed that the disease had not gotten enough research and challenged the ME/CFS community to “watch us” and “Give us a chance to prove we’re serious, because we are”.

Not Great but Not Embarrassing Either

“Given the seriousness of the condition, I don’t think we have focused enough of our attention on this.” Francis Collins

Looking under the hood, the news was good and not so good. While it was great to see the NIH finally pro-actively funding ME/CFS, the Centers project fit a kind of NIH meme evinced by then Director of the Office of Research on Women’s Health Director, Vivian Pinn MD back in 2006 when she stated – in reference to the last NIH-funded ME/CFS grant – that the NIH did just enough not to make it “embarrassing”.

(We wouldn’t even be talking about ME/CFS research centers if Vivian Pinn hadn’t stepped in to rescue ME/CFS after Anthony Fauci cast it out of the National Institute of Allergy and Infectious Diseases (NIAID) in the early 2000s. NIH funding of ME/CFS fell to almost unbelievable depths but ME/CFS’s federal advisory group, CFSAC, remained, and it was that group that got the Institute of Medicine report funded, which then laid the way for Research Centers and intramural project.)

The research centers were a step forward but only that. Researchers reported that they were burdened with so many reporting requirements and received so little money yearly ($1,200,000) that some didn’t apply. Many, though, were so eager to get any money for ME/CFS that ten did, and three research centers were funded for five years. Whatever their limitations, though, the centers still provided a few ME/CFS researchers the rare opportunity to engage in large, complex, and expensive studies.

NIH Doesn’t Get the Memo

“Give us a chance to prove we’re serious – because we are.” Francis Collins, NIH Director

Three years later another singular event occurred – the coronavirus pandemic – that changed everything, it seems, except the NIH’s attitude towards ME/CFS. The near-identical symptoms, the exercise, gut, autonomic nervous system, etc. results all indicate that the predominant form of long COVID is essentially what we know of as chronic fatigue syndrome (ME/CFS).

NIH ignores ME/CFS long COVID connection

So far as NIH funders were concerned, the striking long-COVID ME/CFS connection might never have happened.

Nobody could miss that connection – not the public, not doctors, and certainly not the researchers or bureaucrats in charge of NIH funding. There’s no escaping the central fact that ME/CFS is inextricably linked to what’s been described as one of the most serious health threats of our time. There’s also no escaping the fact that ME/CFS’s credibility is on the rise.

Apparently, the NIH didn’t get the memo. Four days ago, the National Institutes of Health (NIH) announced that the next iteration of NIH-funded ME/CFS research centers would be getting the same crummy funding as the last iteration. Instead of the 20 or so research centers that ME Action noted that National Institute of Neurological Diseases and Disorders (NINDS) Director Koroshetz acknowledged – prior to the coronavirus pandemic – that ME/CFS needs, the ME/CFS community would remain stuck with three small ones.

The funding makes it clear that NIH either never intended the 2017 funding to provide a glide-path for significant new funding or if it did, it quickly forgot about it. With only five institutes supporting the second research center package, compared to nine in the 2017 package, the NIH has become less supportive of ME/CFS over time, not more.  It’s clear, now, that the 2017 funding was in response to a singular event – the publication of the IOM report – and once the impact of that event dissipated, the NIH’s interest dissipated as well.

Time Warp

Hearing that was like stepping into a time warp in which no pandemic had occurred, no link to a major health threat had been established, and ME/CFS remained a kind of strange stepchild that no one wanted to adopt. The unwillingness to substantially increase ME/CFS funding was doubly confusing given that the NIH prominently stated on their RecoverCOVID website that they hoped that the long-COVID research would provide insights into ME/CFS.

What the NIH didn’t say is that it expected those insights to kind of magically morph through the ether or metaphysically translate themselves into ME/CFS findings. It certainly wasn’t going to help. (Somebody on the RecoverCOVID website apparently got a little too enthusiastic about supporting ME/CFS, by the way. The wording supporting ME/CFS has been scrubbed from the website.)

For me, I was so darn naive that it’s embarrassing now to even think about it. When, with a wave of its pestilential hand the coronavirus had laid bare for all to see that post-viral illnesses could be devastating, that they affected young, healthy people, and that the biological abnormalities were there for the looking, I thought that would mean something to the NIH.

After all, the medical profession, by and large, seemed to turn on a dime and publicly quickly agreed that long COVID was real, that it was serious, that it was clearly linked to ME/CFS, and that it needed a lot of funding. Countries all over the world started following long-COVID cohorts with the result that long-COVID research – still in its infancy – already far outstrips ME/CFS/FM research.

The NIH Misses Out

I didn’t take into account, though, that the biggest medical funder in the world – our own NIH – was the odd man out. As the rest of the world sprang into action, the NIH sat on the fence and funded few long-COVID studies. In retrospect, the fact that the only thing we heard from the NIH was Francis Collins’ blog hailing long-COVID patient-supported studies (but not NIH-funded ones) should have been a big red flag.

NIH shizophrenic approach to ME/CFS

The NIH’s strange approach to ME/CFS – highlighting its enormous needs while refusing to do anything meaningful about them – means it can’t be trusted with this disease.

In retrospect, the NIH’s ability to virtually ignore one of the top medical topics of the day was an indication that the old power structures, the special interest groups (read the big, well-funded diseases) were probably fully in charge – and they weren’t having any of this long-COVID stuff. It wasn’t until Congress – in the form of a $1.15 billion check – stated they wanted long COVID studied that the NIH did anything.

Still, I thought the opening long COVID offered for the NIH to redress past wrongs might hold sway. One could persuasively argue, after all, that it was the NIH’s neglect of ME/CFS that had left people with long COVID so high and dry. Plus, there were those 865,000 – 2 million sick people with ME/CFS, who, time and time again were told, when they went to the NIH for help, no thanks – you’re on your own. Surely, the advent of long COVID had activated some pangs of conscience and triggered at least a grudging recognition of some historical wrongs.

With ME/CFS being clearly linked to long COVID, and with the NIH’s coffers full after six years of significant budget increases, it seemed to me that the NIH had all the reasons (and the cover it needed) to do an about-face, make some amends, and provide some real funding. Not a lot by the way – not by the NIH’s standards. A small amount of funding – $20-30 million a year more – would probably have been sufficient for the funding-starved ME/CFS community.

Study Finds ME/CFS Most Neglected Disease Relative To Its Needs

The NIH, after all, wasn’t hiding anything about ME/CFS. It powerfully displayed the needs of this field in its Research Centers grant offering:

“ME/CFS is a debilitating and complex disorder that severely impacts the lives of an estimated 800,000 to 2 million Americans, with 25% or more of the individuals either house- or bed-bound. The underlying etiology and pathophysiology of ME/CFS are unknown, there is no diagnostic test for the disease, and there are no FDA-approved treatments for ME/CFS.”

In its description of a common, almost uniquely debilitating disease with no known etiology, diagnostic test, or FDA-approved treatments, the NIH clearly and succinctly acknowledged the needs present – then dismissed them with its ridiculously low funding. It fully knew, in other words, what it was doing.

Hollowing Out of Key Study

Intramural ME/CFSstudy

The most potentially important study in ME/CFS’s history was stopped well short of its intended goal.

Given the NIH’s recent actions, the hollowing out of the NIH’s intramural ME/CFS research study is of greater significance. The study was truly the cream of the crop of the 2017 funding. Even if the research center studies failed, this impeccably conceived and organized study seemed, except for its very small size, like a cannot-fail project. The most potentially impactful study in the history of ME/CFS, the intramural study essentially constituted a contract with the ME/CFS community. If the study found something, the NIH was bound to follow it up with real money.

Then the study ran into the coronavirus pandemic. Avindra Nath’s decision to curtail the study early and assess its findings was understandable but unfortunate, and potentially, given NIH’s continued hands-off stance towards ME/CFS, devastating. We don’t know what the truncated study will show, but we do know we won’t have the full findings – findings that were supposed to build the backbone of a new and expanded NIH-funded ME/CFS program.

Given the small size of the study, those findings always seemed a bit tenuous (Nath argued they were not), but with the study severely truncated, they will likely have much less impact. With the NIH clearly not embracing ME/CFS, the study’s small size will give it room, if it chooses to, to dismiss them. At the very least, the shortened study could set us back years.

Ironically, long COVID – the beneficiary of the original ME/CFS study – will have those findings, but the small ME/CFS field won’t. Nath has said that he expects the long-COVID findings to apply to ME/CFS, and they surely will, but the ME/CFS field needs to have the resources to validate them in ME/CFS, and given the NIH’s business as usual approach, doing so won’t be easy.

A Consequential Blockade

All of this might not be so bad, and in fact, might not have been that big of a deal if the NIH had just consented to include people with ME/CFS in its long-COVID studies. In possibly the most consequential decision the NIH has ever made about ME/CFS, the NIH decided not to allow ME/CFS patients to participate in the hundreds of Congressionally-funded long-COVID studies it will surely be funding.

Preventing ME/CFS patients from long COVID studies

Preventing ME/CFS patients from taking part in the Congressionally funded long-COVID studies – and then not providing any relief for that – underscores the NIH’s antipathy towards ME/CFS.

Had the NIH decided otherwise, we would have quickly been able to learn what applies to long COVID and ME/CFS, ME/CFS would have been at the head of the treatment studies, etc. Instead, the tiny ME/CFS field is left trying to digest and methodically assess, and then test, the enormous amount of data that’s sure to come from the long-COVID research. That’s far too much for a little field to do on its own in any reasonable amount of time.

That the NIH hasn’t found a find a way to rectify this problem or find a way to support ME/CFS in its effort to do so is just astonishing. Of course, it’s possible that Vicki Whittemore and company will, against all odds, pull off a miracle and convince the NIH to do that. Clearly, nobody should hold their breath.

Illusions Gone – Clarity Reigns

“The field “desperately needs some new ideas.” Francis Collins, NIH Director

All this points to a real naivete on my part – an incredible naivete, really, given the long, long string of disappointments I’ve witnessed over the past thirty years with the NIH. Even after all that, for some reason I expected the leopard to change its spots. This is the single biggest disappointment I can remember in all these years.

There is a silver lining, though, and it’s called clarity. If the NIH couldn’t support ME/CFS research now – when all the stars seemed aligned for it to do so – it’s not going to do so any time soon. The NIH has shown a remarkable ability to shake off damning reports, cries for help, and pleas from very, very upset people. It’s shown that it’s immune to calls for well-considered and thoughtful calls for fairness, equity, or ethical treatment.

As small as the NIH-funded research center package was, it was a start. Now we know that for all the big words – for all Francis Collins’s seemingly heartfelt promises – that the NIH would eventually revert to its mean. This is the shattering fact – that even a global pandemic of long COVID, err ME/CFS patients, couldn’t get the NIH to move even a little bit on ME/CFS.

Let’s hope that Vicki Whittemore and the Trans-NIH Working Group can make some things happen, but let’s give up the idea that they will. Let’s certainly give up the idea that whatever they manage to do will be sufficient. Instead, let’s recognize that NIH is not going to “snap to” or suddenly “get it” – it just had the opportunity to do that and blew it – and therein lies the opportunity. The NIH’s actions have made one thing very, very clear: if we want results in anything resembling a reasonable time-frame, there’s only one place to go – and that’s Congress.

Forget the reports, forget trying to appeal to the NIH’s better nature, forget the well-reasoned arguments. Forget all that. There’s only one organization that can fix this mess – and that’s Congress. That’s doubly true now that the NIH may have finally made its big mistake.

The NIH’s Big Mistake

Instead of turning over a new leaf, the NIH continued on its well-worn path, and therein it may have made its big mistake. The coronavirus pandemic has changed things. Congress pledged $1.15 billion to fight long COVID. That’s not play-around money. That’s serious big-time money. Congress is not fooling around.

Has the NIH turned its back on ME/CFS one too many times?

One wonders, then, what Congress will think now that the NIH has once again turned its back on the original long haulers. These are the formerly healthy, young people who’ve been sick with a long COVID-like illness not for 6 months or a year but for decades. People who, like the long haulers, haven’t been able to find a doctor – except they’ve been looking for decades. People who’ve experienced the same abuse by the medical profession that has enraged the long haulers and their supporters – for decades. People whose careers were ruined decades ago by virtually the same illness that Congress has allocated so much more money for. People who the NIH, left to its own devices, is continuing to treat like dirt.

Hence the NIH’s big mistake. Things may not have changed at the NIH, but they have changed in Congress – and Congress is, after all, the NIH’s master. When the NIH decided to treat ME/CFS as if long COVID never happened, its bias against ME/CFS was starkly laid bare. Its unwillingness to act – even when given all the opportunity to do so – in an appropriate manner with ME/CFS clarifies how little it can be trusted with this disease or the well-being of its community.

The NIH has been derelict in its duties to the ME/CFS community for a long time, but now that dereliction is being laid bare in harsh relief.  If the NIH can’t bring itself to support the original long haulers, a simple, blunt, and much-needed fix is available. Congress relieves the NIH of its role as the overseer of ME/CFS research, Congress decides how much funding is appropriate, Congress, like a parent overseeing a negligent child, oversees the NIH to ensure that it acts.

In making its distaste for this disease crystal clear, I say the NIH has actually gifted us with an enormous opportunity. In fact, it may have opened the door for more ME/CFS research than it could have possibly imagined. As we head into Advocacy month, upcoming blogs will focus on that.

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