When it comes to medical research funding, the NIH is, and always will be, the elephant in the room – the one organization that cannot be ignored, rejected, given up on, or, with regard to diseases like long COVID, ME/CFS, fibromyalgia, and postural orthostatic tachycardia syndrome (POTS), left to its own devices.

It’s very simple. Whatever the NIH’s faults, it remains the singular medical research establishment in the world. Its $47 billion/year budget is more than 20x the size of any other country’s effort. It presents a resource like no other.

This blog is going to take on four different disease groups (ME/CFS, long COVID, POTS, and post-infectious diseases), and it’s going to be very hard on the NIH. It’s crucial, though, that we not get so drowned in upset that we take our eyes off the ball. Our upset stems in part from how great the opportunity is in contrast to how little it’s been realized. One study found that to be commensurate with its disease burden, ME/CFS NIH funding would need to increase twenty-five-fold or more. Dozens of diseases that are less impactful and/or prevalent than ME/CFS, fibromyalgia, or POTS receive much more money.

That is hard to swallow, but we must not forget the enormous possibility that the NIH presents for these diseases, and in general, what a gift it is. The US has poured an enormous amount of money into medical research. We just have to find a way to get at it.

Oh No! A Funding Collapse for ME/CFS?

In December of last year, ME/CFS Science’s devastating post, “NIH funding for ME/CFS keeps falling“, provided a wakeup call. We knew that funding for the NIH-funded ME/CFS research centers was down by about 50% and that one research center had been dropped – that was bad enough – but ME/CFS Science’s perceptive reporting pointed out that funding for individual investigators might be about to take a big hit as well.

ME/CFS Science found that funding was actually lower than the NIH reported. Going project by project, ME/CFS Science could find only $10 of the $13 million the NIH reported ME/CFS received in 2024. Then, after Ian Lipkin’s ME/CFS research center was temporarily defunded, ME/CFS Science was able to find only $7.4 million in funding for 2025. Adding Lipkin’s renewed funding brought the new total to $9.4 million, but Lipkin’s work was grounded for much of the year.

Those were the lowest funding levels in over a decade, but they looked like good times when ME/CFS Science looked forward to what was happening in 2026. With five grants projected to end in 2025, and only two newly funded projects, unless some new grants showed up, it looked like ME/CFS funding at the NIH was about to take an even bigger hit.

Nobody could have foreseen this. Indeed, a couple of years ago, it seemed like good times were finally coming. ME/CFS, after all, turned out to be very similar to a disease, long COVID, which is getting quite a bit of funding. Plus, a CDC report dramatically increased ME/CFS prevalence, an ME/CFS Conference took place at the NIH, the massive ME/CFS Research Roadmap (8 reports, 8 webinars, 156 page report) was completed, and while the Nath Intramural study had been truncated, it still validated a surprising number of findings. Indeed, the relative success of the project indicated that, far from being some sort of impenetrable, wastebasket disease, ME/CFS could be successfully researched.

The NIH said it wanted proof that ME/CFS could be successfully studied, and with the Intramural study, it got it in spades. It said it wanted directions it could pursue, and it got them in the Roadmap, yet instead of rising, ME/CFS’s already low funding appears to have fallen rather dramatically.

This is not due to a decline in researcher interest. A Freedom of Information Act (FOIA) request indicated that the CFS SEP (which oversees ME/CFS grants) received 11 applications in 2022, 19 in 2023, 10 in 2024, and 18 in 2025.

The decline is due to a combination of factors. Some of it is just bad luck. The rest is clearly due to the NIH’s decades-long resistance to funding ME/CFS research.

Bad Luck

ME/CFS seemed poised for a breakthrough in 2025, but all plans were derailed by the chaos that occurred at the NIH during the first year of the Trump administration.

The massive cuts to the NIH that the administration proposed, the large job losses imposed by DOGE, and the big drop in the number of grants funded all played havoc with any diseases trying to move forward with the NIH, let alone a neglected disease like ME/CFS.

With the NIH basically refusing to move forward with or review any new grants for much of the first half of 2025, the number of new grants awarded plunged by 20%, and the grant success rate dropped to its lowest level in 30 years. The NIH (smartly) resorted to an accounting tactic to hold its budget steady at almost $50 billion in 2025: it paid out the full total of its multi-year grants all at once, rather than funding them year by year.

ME/CFS got hit in a number of ways. The funding loss caused by the elimination of one ME/CFS research center was supposed to have been made up with a major ME/CFS grant opportunity. That was slated to show up at the end of 2024, but the chaos over the next year at least temporarily derailed it.

The good news is that grant applications for ME/CFS, while still nothing to crow about, have increased recently. A Freedom of Information Act request indicated that the NIH received 13, 19, 10 and 18 grant applications during 2022, 2023, 2024 and 2025.

Note that the problem for ME/CFS is not that reviewers are rejecting ME/CFS grant applications wholesale. The last time I looked, the grant success rate was roughly normal. The problem is that getting researchers into the field requires guaranteed NIH funding.

ME/CFS Grants Show Up

The year is not done, and more grants may be approved later this year. Thus far, though, three major ME/CFS grants have been awarded. I believe that would bring us near our recent totals.

LDN Clinical Trials Grant – Jarred Younger won a rare clinical trials grant to assess the efficacy of LDN in 150-225 people with ME/CFS. Fifty people will also undergo advanced neuroimaging and blood tests of neuroinflammation, neurodegeneration, and oxidative stress in an attempt to find biomarkers that track with success and to learn how LDN is doing what it is doing.

The Blood Brain Barrier Grant – A major (RO1) grant, “Blood-Brain Barrier Integrity and Immune Dynamics in Neuropsychiatric Sequelae of Post-SARS-CoV-2 onset ME/CFS versus Pre-Pandemic ME/CFS Patients“, is being funded. The five-year, 300-person project will assess the integrity of the blood-brain barrier (BBB) in pre-pandemic ME/CFS and post-pandemic ME/CFS patients.

This is a timely grant! The author, Alba Azola, who works with Peter Rowe at Johns Hopkins, believes that damaged endothelial cells lining the blood-brain barrier are allowing immune cells to enter the brain and produce neuroinflammation. This is the kind of grant that makes me yearn for more.

The Mold Grant? – Then there’s the big surprise. The last thing I would have thought the often stodgy NIH would have funded would have been a mold grant, but the multi-year, 200-person Nathanson grant “Stratification of ME/CFS by mycotoxin exposure” coming to Dr. Klimas’s group is going to do just that. This is a major grant which will assess mycotoxin levels, gene expression, immune analyses, etc.

While these are good grants, they still leave us considerably below our peak 2021 levels and obviously well below what a disease of this size and impact deserves.

Like Lazarus rising from the dead, the biggest opportunity in years, however, has shown up.

Back from the Dead: the ME/CFS Research Roadmap Gets New Life

The ME/CFS Research Roadmap presented the greatest opportunity for ME/CFS since Solve M.E. tried and failed to get Congress to take over funding for ME/CFS approximately 10 years earlier. If that effort, which was also years in the making, had succeeded, I have no doubt that, with long COVID highlighting the need for more post-infectious disease funding, ME/CFS would be getting tens of millions of dollars more in funding now.

I don’t think most people realize how big of a deal the ME/CFS Research Roadmap Initiative potentially is, and what it took to create it. It’s actually been in process for 7 years.

NIH Research Roadmaps have been around for about 20 years. They mainly involve pan-institutional diseases or areas that don’t fit neatly within the heart and blood, neurological, or immune institutes. The NIH creates these Roadmaps when it recognizes that business as usual isn’t working.

They give the NIH guidance on grant packages to produce, what centers to create, what technologies to focus on. Once implemented, they provide a coordinated, multi-year plan, and they’ve been effective in accelerating research.

The ME/CFS Research Roadmap, though, has been a different animal from the beginning. It’s the first roadmap produced for a disease that lacks institutional support and receives low funding. Other roadmaps (Brain, Pain strategy, Alzheimer’s) were built on top of fields with ample funding but which needed cross-institutional support to maximize their potential.

Instead of accelerating a field like the other roadmaps have, the ME/CFS Research Roadmap is essentially trying to repair/ build a field that the NIH has officially recognized is underfunded, and has recognized it’s underfunded for a long time, and yet, has done little about it.

Step-by-Step Process

Creating the ME/CFS Research Roadmap was a step-by-step process taken within the NIH, and the fact that it happened at all is due to the now departed NINDS Director, Walter Koroshetz.

(Koroshetz publicly supported ME/CFS, regularly attended the patient meetings, conferences, etc., supported the Trans-NIH Working Group, increased NINDS funding for ME/CFS, and got the Research Roadmap going. He was easily the most involved NIH Director ever, and it’s too bad that he’s gone.)

First, a Working Group composed of NIH staff, ME/CFS experts, and patient/advocates had to be created. That group had to create a report demonstrating that barriers to ME/CFS research exist and recommending that a strategic planning document (the Roadmap) be produced. The NINDS Council approved the document in Sept. 2019.

A couple of months later, COVID hit, and work on the Roadmap stopped before it got started. It started up again in 2023 and ultimately resulted in a massive effort that produced 8 separate reports and webinars, as well as a 148-page final report. It was approved in May 2024 by the NINDS council.

Now came the implementation phase, which would lay a coordinated plan that included such things as grant packages, research centers, working groups, clinical trials, etc.

But nothing happened. The Roadmap received zero funding. No implementation plan was produced. No grant packages, new centers, clinical trials, or new working groups were announced. Vicky Whittemore told me that, in part, this was due to staff cuts produced by DOGE. It appeared that the Roadmap was dead and gone – until advocates from MEAction and NotJustFatigue resurrected it.

The Elizabeth Ansell / #NotJustFatigue Interview

I talked with Elizabeth Ansell, the creator of the spectacular #NotJustFatigue website, about the Roadmap and her organization. Elizabeth has had a severe case of ME/CFS for ten years, and at one time was unable to speak or respond to speech.

There was no sudden crash, just a gradual decline punctuated by viral infections. She had worked with ABC and Showtime prior to getting ill, and promised herself that if she got well enough, she would contribute. She is still bedbound, and it took her six and a half years to produce #NotJustFatigue, but it is a beauty. It’s a visually evocative website that resonates emotionally.

#NotJustFatigue has created a film, a series of short impactful videos including “You could be next”, “You have no idea how serious this is”, “Get out of my office”, “It not hysteria, it’s sexism”, as well as a nifty ME/CFS history, and provides regular advocacy updates. She said many people have written how the videos have helped them communicate about this disease.  Elizabeth regularly engages in advocacy from her bed and has used the videos to quickly get Congressional staffers up to speed on ME/CFS.

She told me that two years of behind-the-scenes efforts talking to Congressmen and their staffers (and 7,000 persons signing #MEAction’s letter) resulted in a Feb. 2026 Labor-HHS-Education appropriations bill, which included language directing NIH to “provide a detailed implementation plan for the ME/CFS Research Roadmap to the Committee within 180 days of enactment“. That is due by August of this year, and Vicky Whittemore and company at the NIH are working on it.

The implementation plan does not mean the NIH will fund the plan. If the past is prologue, in fact, it’s hard for me to imagine the NIH doing anything other than dropping it in a dusty file cabinet somewhere.

That’s why, in March of this year, #NotJustFatigue, #MEAction, and Solve M.E. made a coordinated push for $50 million in the 2027 appropriations bill to fund the Roadmap implementation plan. #MEAction also secured a meeting with NIH Director Bhattacharya to discuss implementing the roadmap. That was supposed to happen on May 13 but has been postponed, and apparently rescheduled.

Time will tell. $50 million is a nice chunk of change for a disease that’s barely getting $10 million/year, but Elizabeth regards it as just a start. The good news is that our advocacy orgs are aligned on getting funding for the Roadmap passed, we will soon have an implementation plan, and, if funding doesn’t happen this year, they’re going to keep pressing on it.

There’s no giving up on the NIH and its $45 billion budget. At some point, it’s going to crack.

Long COVID at the NIH

Forty years ago, I was naïve enough to believe that if I could go from a healthy, vital young man to a shadow of myself, there MUST be a large team of researchers working hard to figure out what happened. I see the same statements today from long-COVID patients.

It’s not true. Yes, some researchers are working hard, but tackling a disease requires large, concentrated, and persistent efforts, and that’s never come close to happening in ME/CFS. Thanks to Congress, it did get started in long COVID.

Yes, the RECOVER project has been a huge disappointment. It’s basically confirmed every negative critique about the NIH: that it’s a stodgy, conservative organization. It’s still getting funded though, and that’s saying something.

After the RECOVER Initiative blew through its $1.5 billion stash, the NIH plowed $600 million into the program to save it. The NIH, it seemed, had changed its spots. Now it was giving hundreds of millions of dollars to long COVID.

Or was it? The NIH didn’t have to do the hard work of reallocating funds from other diseases to long COVID. Almost all of that money came from unused COVID-19 funding. This wasn’t necessarily, then, an example of the NIH saying that “we now view long COVID as a priority”. It may have been more the NIH finding a way to use up unused COVID-19 funding. In fact, because COVID-19 was no longer a priority, long COVID may have been one of the only ways the NIH could use that money. (If the NIH doesn’t use its money after a period of time, it loses it.)

Basically, the RECOVER program lucked out. The money should keep the RECOVER program going, albeit at a lower level, through 2029. RECOVER will have to find another way to fund its programs shortly.

Words Will Get You Exactly Nowhere

The latest iteration of long COVID and ME/CFS at the NIH looks sinkingly familiar. NIH Director Bhattacharya and DHHS Director Kennedy have said all the right things about ME/CFS and long COVID. Bhattacharya has publicly emphasized that ME/CFS and long COVID are real, historically neglected conditions. He’s even agreed that both groups of patients have been “gaslit”. He stated that he assured long-COVID patients that the NIH was going to find an answer.

Similarly, in his confirmation hearings, RFK Jr. noted that he has a son with long COVID and explicitly pledged to direct long-COVID research funds toward potential treatments and diagnostics “with enthusiasm”. In Sept, 2025, RFK Jr. hosted a long-COVID roundtable, which endorsed increased biomarker/diagnostic work, mechanistically informed clinical trials, and stronger pharma engagement, and announced he was creating a long-COVID consortium.

Researchers and advocates left the event excited about the progress they expected to happen. Eight months later, nothing has happened. Kennedy hasn’t even fulfilled his easiest promise – the creation of a long-COVID consortium to help guide research and clinical trials.

A consortium, of course, is a far cry from what the field really needs: a state-of-the-art biomarker/diagnostics long-COVID effort that includes large, multi‑site cohorts employing multi‑omics (proteomics, metabolomics, autoantibody profiling, viral sequencing, etc.) to look for molecular signatures. Basically, it would do what the RECOVER Initiative could have and should have done and alone had the money to do.

It might cost $50 million/year for five years but it could break the back on long COVID. That seems like a lot of money, but that’s the kind of money that the $46 billion/year NIH regularly ponies up when it’s serious about something.

I wrote, in a letter to the long-COVID community at the beginning of the pandemic, urging them to never, ever trust the NIH’s heartfelt protestations about long COVID. The NIH has NEVER in the past 40 years said a single negative thing about ME/CFS. It’s always said that it’s a serious disease. And it’s always behaved as if it is not.

Unless statements from NIH leaders are backed up by real action they’re just window dressing designed to mollify the patients. It’s an old and tired phrase, but it’s true – follow the money. That’s the only thing that matters.

We have good people at the NIH who would like nothing better than to see ME/CFS and long COVID succeed. The problem is that they’re caught within a system that actively pulls against supporting these diseases.

That’s why Congressional advocacy is critical.

POTS and Dysautonomia at the NIH

Postural orthostatic tachycardia syndrome (POTS) is in the same boat. Despite the fact that at least 1-2 million people in the US have POTS (the number has surely risen since the pandemic), getting the NIH on board with POTS has been like giving a cat a bath. It will seemingly do anything to avoid supporting it. The NIH won’t even take the trouble to break out POTS funding.

Dysautonomia International has been trying. It’s July 2017 Lobby Day and October Congressional briefing led Congress to formally recognize POTS as a disabling, under‑researched condition and stated that it “expected” the NIH to “stimulate the field”.

Seemingly working as slowly as humanly possible (but probably at its normal pace (lol)), the NIH produced a POTS workshop in July 2019, which generated priorities for future research, better studies, better prevalence figures … the whole shebang.

Seven months later, a Workshop report was given to Director Collins, and the official 21-page report was published in a Journal about two years later, in June 2021. The Report agreed that POTS was serious, needed more research, etc. – things we’ve heard so many times regarding ME/CFS – but crucially, as we’ve seen many times in ME/CFS, it did not produce a funding target. Doing that in an NIH-produced report would have produced some obligation for the NIH to take action, and that was a bridge too far for it to cross.

Dysautonomia International subsequently produced two larger journal reports from the Workshops and explicitly asked for $50 million over 5 years.

Three years later, in 2024, Congressional testimony indicated that the NIH was still spending less than $2 million/year on POTS. In 2024, the NHLBI Institute produced a “Notice of Special Interest” (now expired) which explicitly invited POTS researchers to apply for grants. It highlighted how prevalent and disabling POTS is, and how it overlaps with ME/CFS and long COVID. It too, did not, however, provide any funding.

Funding remains low. In fact, NIH POTS funding levels, adjusted for inflation, may be even lower than they were 10 years ago. The NIH simply refuses to “support the field” in a meaningful way. (We’ll know it’s supporting the field in a meaningful way when funding increases.) It still does not even provide funding levels of POTS research.

This does not mean that progress has not been made. Getting the NIH to hold a Workshop on a disease it had virtually ignored, writing an official report, and securing a Notice of Special Interest are all steps forward. POTS now has visibility at the NIH.

Notice, though, how hard it’s been to get the NIH to move on POTS. One would think it would be easy. POTS, after all, unlike ME/CFS, has biological-based diagnostic criteria, making it harder to pretend that it’s not a real disease. Prevalence figures indicate that it affects many people, including many people with long COVID. The RECOVER project has even aimed large clinical trials at it. It’s gotten a lot of publicity due to its connection with long COVID.

Like ME/CFS, like fibromyalgia, like long COVID, though, POTS remains stuck at the NIH. My belief is that the NIH is BUILT – not intentionally – but still built to resist the entry of new diseases into its pantheon. These are often disabling, complex, “invisible”, and prevalent diseases such as ME/CFS, FM, and irritable bowel syndrome, which do not usually kill, and which mostly affect females.

Without Congressional action, we can expect the NIH to continue doing what it’s been doing for decades.

The Doomed NIH Post-Infectious Grant (and Field?)

Take the latest and greatest – post-infectious diseases. One might think that the NIH would be eager to jump into a new field, and show that it’s not the stodgy, stick-in-the-mud institution that so many people accuse it of being. Who, after all, wants to get left behind?

As noted in an earlier blog, Germany has reportedly promised to fund post-infectious disease research to the tune of $500 million over 10 years. Its goal is to be a leader in this newly emerging field. If it even comes close to that, its goal will surely be achieved.

Its biggest competitor would be the NIH, but the NIH is once again, oh so consistently, asleep at the wheel.

The NIH has several ways to show researchers that it’s serious about a field: first, it commits to a certain amount of funding to a major grant opportunity, commits to funding a large number of grants, and gets buy-in from the Institutes. That gives researchers confidence that the months they spend writing a grant application will not be in vain.

The one NIH post-infectious grant opportunity (PAR‑25‑116: “Towards a Better Understanding of the Neurological Effects of Infection-Associated Chronic Illnesses” did none of those things. It provided no funding, did not commit to funding any grants, and got little buy-in from the Institutes/Offices. Plus, it required a twist – mechanistic research – which put a further burden on researchers entering into a new field. Plus, the rules were changed in mid-game by the Trump administration. The institutional support from the NIH for this weakest of grant opportunities consisted of the three NIH Institutes/Offices who supported it (NINDS, NIMH, OD).

Instead of starting to build a field, the NIH effectively communicated the following message: “We’re not interested in this field”. That message was received. The one post-infectious grant opportunity proved to be a nothing burger. As far as I can tell, PAR-25-116 funded one grant. (Ironically, it did happen to be an ME/CFS grant…:))

Lyme Disease Makes it Over the Hump!

Lyme disease appears to be the only post-infectious disease to make it at the NIH. Its trajectory demonstrates what might have happened had Solve M.E. been able to convince Congress to create a line item for ME/CFS within the NIH around 10 years ago.

That line item has made all the difference. Line items have been described as the holy grail for advocacy groups because when Congress produces one, it commits NIH to spending a specific amount of money on a disease. They explicitly tell the NIH that Congress is not happy with how the NIH is spending its money, that it’s on the watch, and the NIH is on the clock. With a line-item, a disease is no longer at the mercy of biases at the NIH. Now it has political protection.

I have no doubt that, given ME/CFS’s association with long COVID, ME/CFS would have $50 million/year in NIH funding if Solve M.E. had been successful.

Something like that, after all, happened with Lyme disease.

In the mid-90s, Lyme Disease funding at the NIH was in the pits, and Lyme advocates were doing pretty much what ME/CFS and POTS advocates are doing now: getting specific language into appropriations bills, urging the CDC and the NIH to do more. By the late 1990s, Lyme was receiving about as much money as ME/CFS is now, and it slowly crept up to $15-20 million by the early 2000s.

In 2019, a 501 (c) (4) organization, the Center for Lyme Action, was created specifically to lobby the federal government. In 2021, Lyme and tick-borne illness funding at the NIH became a line item in the appropriations bill, and total federal funding shot up to $82 million. The next year, NIH/CDC funding more than doubled to approximately $153.5 million by 2022. Last year, total US government funding for Lyme and tick-borne illness exceeded $200 million.

So, it can happen.

Conclusion

The conclusion is not pretty, but we have to be clear-eyed about what we’re up against. History shows that, left to its own devices, the NIH is not going to do anything significant for these fields. It will say nice things about them, it will communicate its sincere concern, it will create reports, it will even agree that they need a lot more funding: it simply won’t provide it.

For me, there’s some comfort in knowing that we’re all (ME/CFS, fibromyalgia, long COVID, POTS, etc.) in the same boat. (Doesn’t it suggest that we should be working together?)

At some point, I imagine the NIH will surprise us, but the message from this blog, and it can’t be repeated too many times, is that the only remedy is Congressional action, and that’s why we need to support groups like Solve M.E., #MEAction, and #NotJustFatigue, focused on that.

Here’s hoping they can secure $50 million to support the Roadmap Initiative in the 2027 Appropriations bill. That would be a game-changer. We should know soon enough.

Health Rising’s Donation Drive Update

Thanks to everyone who has brought us to almost 45% of our goal. Research/treatment blogs may be more appealing, but ultimately, I would argue that nothing is more important than being kept apprised of, and taking action on, our status within institutions like the NIH.

ME/CFS and long COVID appear like they’re on the verge of major breakthroughs, but the kind of studies needed to readily produce those breakthroughs need to be large, expensive, and comprehensive ones, and if that’s the kind of study you want, the NIH is the place to go. That’s why, for all the angst and upset surrounding that organization, we can never give up on it. Thankfully, our advocacy organizations have not, and neither has Health Rising.

If being kept informed of the situation – good or bad – with the federal funders that drive so much medical research is important to you, please support us.

 

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