Geoff’s Narration

The GIST

Whoa! This was a bit of unexpected good news. I had to read the sentence from Solve M.E. below twice to make sure I got it right.

“This year’s Senate Appropriations bills include some of the strongest support for ME/CFS we’ve seen in over a decade.”

Advocacy made the ME/CFS gains possible.

Could it be that in this year of billions of NIH cuts, ME/CFS (and long COVID) are getting stronger? It’s possible. The cuts, the Office closures, the shutdown of Ian Lipkin’s research, and the attempt to cut the NIH and CDC’s funding from 40 to 50% – they’re all coming from the Trump administration, not Congress, and it’s Congress that holds the purse strings.

The Trump administration may propose cutting NIH and Centers for Disease Control funding by 40-50% but ultimately, it’s Congress that decides the budget and sends it to the President for sign (or not).

So, it is possible for Congress and the Trump administration to be going in very different directions. It’s still notable, though, that despite some pretty fierce headwinds from the Trump administration, our status at the congressional level may have actually improved.

That’s the result of dedicated advocacy at the Congressional level from three organizations, Solve M.E., #MEAction, and, more recently, #NotJustFatigue.

Solve M.E. reported that 80 federal appropriations requests have been submitted, 187 congressional meetings occurred during Advocacy Week, and 3,500 messages were sent to Congress. Over 2,000 people signed #MEAction’s letter to the NIH Director, asking that the NIH allocate $50 million to implement the Roadmap Initiative.

STOP!

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Deciphering The Senate Appropriations Bill

The Senate uses specific language to signal its intent. Occasionally, the bill allocates specific monies for a disorder; e.g., “The Committee provides no less than $285,295,000 in NINDS for the HEAL (chronic pain) Initiative” or “The Committee includes not less than $110,000,000, an increase of $10,000,000, for research into Lyme and other Tick-Borne diseases” (whoa!) – to cite two helpful instances. (Lyme disease has a very strong advocacy movement.)

Most of the time, appropriation bills use words like “urge” and “encourage” to tell the NIH/CDC what Congress wants it to focus on. Getting the appropriation bills to specifically state how much the NIH will spend on ME/CFS is where we ultimately want to get to – and almost did at one point.

What Might Have Been 

Prior to the pandemic, Solve M.E. tried to get us there. The goal was to get Congress to instruct the NIH to continue its existing spending – and then increase funding from there. (This is how that process works.)

After years of getting signatories to letters stating ME/CFS needed more funding, the effort was launched, and got a good number of sponsors, but ultimately failed.

That turned out to be a kind of tragic failure because long COVID was just around the corner, which raised ME/CFS’s visibility dramatically. One would have thought that would have helped ME/CFS at the NIH, but despite our attempts (the NIH ME/CFS conference, Roadmap), the Nath Intramural study, and the CDC’s dramatically increased prevalence statistics, support for the ME/CFS research centers declined, and NIH funding decreased – demonstrating once again, that when it comes to the NIH, political pressure is critical.

Lyme Disease’s trajectory demonstrates what was possible had we gotten Congress to incorporate line-item funding for ME/CFS in the appropriations bills.

In the mid-to late 1990s, Lyme Disease received about the same amount of funding as ME/CFS. During that time, similar to what is happening with ME/CFS now, the appropriations bills started including specific language urging first the CDC and then the NIH to do more. Over time, it slowly crept so that, by the early 2000s, it was up to $15-20 million – again about what ME/CFS was receiving from both the NIH and CDC.

In 2021, Lyme and tick-borne illnesses at the NIH became a line item on the appropriations bill, and NIH CDC funding shot up to $82 million. The next year, funding more than doubled to approximately $153.5 million by 2022. This year, NIH funding was increased to $125 million, and total US government Lyme and tick-borne illness funding is $157.5 million. Since Lyme became a line-item on the appropriations bill, its funding has increased tenfold. 

That’s the potential of having a line item for the NIH in the appropriations bill.

Back to the Present

As noted earlier, the Appropriations Committee mostly uses words like “encourage“, “urge,” or “expect” to signal its intentions. These are not legally binding words but signal “strong guidance” from Congress that the NIH is expected to treat seriously.

Sometimes the NIH uses the word “concern,” i.e., “The Committee remains concerned about the economic and overall health impact that Long COVID inflicts on the Nation”. “Concern” indicates that Congress believes the subject deserves attention but carries less weight than “expects,” or “encourages”.

When the Senate “directs’ the NIH to do something, on the other hand, the NIH is expected to do it. A directive is “regarded almost as law” by the NIH. To the best of my knowledge, the Committee rarely directs the NIH to do things.

Remember – the House bill is next!  

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ME/CFS Roadmap 

The NIH’s ME/CFS Roadmap Initiative was intended to be a significant development. Years in the making, the Roadmap resulted in a series of webinars and a detailed, comprehensive strategic document designed to give the NIH direction in funding ME/CFS research. Because the Roadmap originated within the NIH and was approved by the NIH, it had special cachet. The NIH itself was laying out the most fruitful path for ME/CFS research.

The Senate bill directs the NIH to produce a “detailed” plan to implement the Roadmap.

Similar strategic documents have led to increased funding for other diseases, but this has not yet happened with ME/CFS – not yet. In fact, the opposite has occurred. One of the three ME/CFS NIH-funded Research Centers was lost. Accounting for inflation, funding for the NIH ME/CFS research centers has declined by approximately 50% (in real terms) since their introduction. Similarly, accounting for inflation, ME/CFS funding – frozen at $13 million for the past couple of years – is about 30% lower than it was in 2018. A grant that was expected to be published in December to compensate for the Center’s loss has not materialized. (Neither did two post-infectious grant opportunities.)

We still have an NIH-produced Roadmap, which asserts that the NIH should increase funding. #MEAction and #NotJustFatigue spearheaded the drive to get the Senate to compel the NIH to implement the Roadmap. Dozens of meetings on the Hill and thousands of letters to the new NIH director paid off, resulting in language that supports the Roadmap.

The Senate Appropriations bill “encourages” the NIH to implement the ME/CFS Roadmap and, more importantly, in the strongest language used in the bill, it “directs” the NIH to provide Congress with a detailed plan outlining how it will do so.

The bill states:

“-The Committee recognizes the urgent need to advance research for ME/CFS, especially given its overlap with Long COVID and relevance across multiple ICs, and commends NIH for approving the ME/CFS Research Roadmap. The Committee encourages NIH to implement the roadmap’s recommendations, including advancing biomarker discovery, diagnostic tool development, and clinical trials. NIH is further directed to provide a detailed implementation plan to the Committee within 180 days of enactment.”

CDC Funding Retained

This year, simply being able to retain the federal funding we already have counts as a big and surprising win. Funding for ME/CFS at the CDC is always a little tenuous because it’s a line-item addition that needs to be renewed annually and could get taken away at any time. This year, the funding seemed destined to disappear, but the Senate held the line, and the $5.5 million outlay for ME/CFS will continue. That’s a remarkable achievement given that RFK Jr. has proposed cutting the CDC budget in half.

Long COVID (and ME/CFS)

The Senate bill wants the RECOVER and Heal Initiatives to expand their clinical trials to account for more ME/CFS-like symptoms.

Long COVID gets one of the longest paragraphs in the bill. The Committee made it clear to the NIH that when it comes to long COVID, the NIH should not forget the other post-infection syndromes: It notes:

“long COVID resembles other post-acute infection syndromes [PAISs], such as fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome [ME/CFS] and related conditions, known as chronic fatigue syndrome [ME/CFS] and related conditions, known as chronic overlapping pain conditions [COPCs] or nociplastic syndromes.”

The Senate Appropriations Committee stated that it is “concerned” that the RECOVER and HEAL Initiatives are not evaluating enough treatments that target the ME/CFS-like subset of long COVID. ME/CFS advocacy has been focused on ensuring that ME/CFS, long COVID, POTS, and other post-infectious diseases are together in one big (hopefully) happy family. To that end, we see the symptoms associated with these diseases explicitly stated in various passages of the bill, like this.

“While the Committee is pleased that NIH’s HEAL and RECOVER initiatives plan to target some specific symptoms of Long
COVID, the Committee is concerned that NIH has not expanded the evaluation of treatments to address many common symptoms associated with Long COVID either individually or that present as syndromes which are combinations of symptoms… such as “widespread pain, fatigue, non-restorative sleep, brain fog, dizziness, post-exertional malaise [PEM], postural orthostatic tachycardia syndrome [POTS]”.

It “urges” the NIH to rebalance its research program to prioritize clinical trials and urges NIH to “prioritize the support of clinical trials that have demonstrated efficacy in… treating COPCs or nociplastic syndromes that overlap with Long COVID.”

High Risk, High Reward Work – Will ARPA-H Show Up?

In a win, the bill specifically urges ARPA-H to engage in high-risk/high-reward work on long COVID, ME/CFS, and other post-infectious diseases.

Plus, the bill also “urges ARPA-H to invest in high-risk, high-reward research into long COVID” and “Long COVID-associated conditions, such as dysautonomia, postural orthostatic tachycardia syndrome [POTS], and myalgic encephalomyelitis/chronic fatigue syndrome [ME/CFS].” and to do the work to invest in clinical trials focused on the ME/CFS-like symptoms.

This was a significant step forward. Advocates attempted and failed to include language in the 2024 Appropriations bill requesting that ARPA-H focus on these diseases.

With no congressional direction, ARPA-H acted much like its sister agency – the NIH – and did nothing. That’s a bit of a disappointment as we’d hope that ARPA-H with it’s exciting mandate “to fund high-risk, high-reward biomedical and health research that cannot be readily accomplished through traditional funding mechanisms” would jump on these diseases, but it began no projects on long COVID, ME/CFS, or post-infectious diseases.

Now the bill – if it passes muster in the House – is asking it to do just that.

Women’s Health Issues Supported

On a side note, the Senate bill dramatically increases funding (from $70 to $106 million) for the Office of Research on Women’s Health to continue to “research sex and gender influences in health and disease within the NIH scientific framework (note the careful language) to achieve equity in women’s health across the lifespan. Congress is committed to prioritizing this research portfolio and ensuring ORWH has the resources it needs to help fulfill its mission.”

The Senate bill gives the Trump administration a tight timeline for disbursing funds.

Funding Must Be Quickly Disbursed 

In what must be a new section for the Appropriations Committee, the “Time Access to Funding” section says no more withholding funding for grant awards. The bill states:

“The Committee is concerned about ongoing delays in awarding NIH fiscal year 2025 appropriated funds and noted that in July 2025, NIH’s rate of grant awards and overall spending lagged more than $5,000,000,000 behind the same period in fiscal year 2024.”

“This scale of slowdown in NIH spending threatens to disrupt critical biomedical research projects across the country. Therefore, the Committee directs NIH to award competitive grants as expeditiously as possible and noncompetitive grant renewals within 30 days of the end of their period of performance”.

Taking It to the House

All of this is naught unless the House agrees to sign the bill using the same language. The next step then is taking it to the House – and Solve M.E. makes that so easy…

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