Health Update – continued slow improvement!
Hot Button Post – the reason Health Rising almost never posts on political issues is that they hardly ever intrude upon medical research. In this case, the Trump administration’s proposed rule changes to the conduct of medical and scientific research could dramatically affect ME/CFS, fibromyalgia, and long COVID fields. As much as I’d like to avoid topics like this, I don’t see how to avoid it.
The new rules constitute an about-face on how the US has funded scientific research.
President Trump is surely the most polarizing figure in recent US political history. People tend to run very hot or very cold regarding him. Trump supporters – please do not perceive this as an ad hominem attack on President Trump. It is an attempt to deal with a serious issue. If President Biden had proposed these new rules, the response would have been the same. Trump non-supporters – please do not use this post as an opportunity to vent regarding Mr. Trump. Everyone, please stick to the topic at hand.
Alarm bells rang when UC Berkeley chemist Omar Yaghi, PhD, decamped to China to pursue an initiative to apply artificial intelligence to materials science. Materials science may sound rather boring, but it’s actually a critical area that has underpinned many of the technological breakthroughs of our era, and Yaghi is not just any researcher.
Yaghi was born to a poor Palestinian family that had fled to Amman, Jordan. He grew up in a single-room house that also contained the family’s livestock. Now 60, he has been studying and working in the U.S. his entire adult life. Last year, he won the Nobel Prize in chemistry, and the University of California Board of Regents promoted him to their highest honor – the rank of University Professor – which is reserved for scholars of the highest international distinction. (He has also won the Albert Einstein World Award of Science (2017), the Wolf Prize in Chemistry (2018) among many others.)
Omar Yaghi’s move to China because it gave him more opportunities for research sent shockwaves through the scientific establishment. Yaghi won the Nobel Prize in chemistry last year. (Image by Christoper_Michel via Wikimedia commons)
It wasn’t enough. Yaghi will lead a new AI institute in China devoted to discovering new materials to power the next technological breakthroughs. The idea that a premier researcher in such an important field would leave the US for another country sent shock waves through the scientific establishment. Yaghi said he took the post “to do science with more energy, more intensity, and more ambition than ever before”; i.e., he found more opportunities to do science in China than in the U.S.
Science has arguably been the United States’ superpower. We’ve led the world in innovation for decades, but times are changing. China now produces almost 50% more patent applications than the U.S. and invests more in research and development. By placing barriers that make it difficult for the U.S. to attract the best and brightest – arguably its greatest superpower – the U.S. is slowly ceding its lead on science.
The Trump administration’s proposed federal rules will upend the way the U.S. has approved and distributed scientific grants over the last 50 years will only increase the drain – and I believe they will hurt medical research. I believe they should not be allowed to stand. An opportunity to comment on these rules is given at the bottom of this post. This opportunity ends at midnight, EST, on July 13th.
The Proposed Federal Rule to Politicize Science (Regulation for Federal Financial Assistance (Proposed Rule, 91 FR 32198, May 29, 2026)
The U.S.’s merit-based scientific infrastructure, with its external peer reviews, conflict-of-interest checks, formal scoring, and other features, has been adopted by developed countries worldwide. Now, the Trump administration is proposing to turn back the page on the scientific review process. Under its new rule, political appointees, not researchers, will determine which research gets funded and which does not.
Political Appointees, Not Researchers, Decide Who Wins Grants
The proposed rule gives political appointees the final power to approve or reject all grant proposals. This is not just an unusual move – it’s unprecedented in the West. Except for Hungary – exactly a Western-facing country – I could find no other Western-facing countries that give political appointees the last say over research grants. Even China relies on peer-reviewed panels.
The response to the proposed rule from the scientific community has been swift and unanimous. In its “Solve Fights Proposal to Dismantle Federal Research Infrastructure” email blast, Solve ME wrote:
“Scientific discovery depends on a strong, independent research infrastructure. When that foundation is weakened, patients pay the price.”
“The provisions described below would cause serious harm to the federal biomedical research infrastructure regardless of one’s political perspective, undermining taxpayer return on investment, ceding American scientific leadership to international competitors, and imposing new bureaucratic burdens that would slow rather than accelerate results for patients.”
The American Association for Cancer Research called the proposed rule changes “a major threat to the National Institutes of Health (NIH) and its lifesaving mission to accelerate progress for patients with cancer and the hundreds of other diseases that afflict millions of Americans.”
Research America warned that, ”Taken together, these changes would move the federal research funding system away from scientific merit, collaboration, and stability. The result would be slower scientific and medical progress, delaying the discoveries, treatments, cures, and public health advances that Americans depend on.”
In the Scientific American, Colette Delawalla, founder of the science advocacy group Stand Up for Science, stated:“It replaces expertise with political appointees, globally decouples the U.S. and completely guts our scientific ecosystem.”
Whatever problems the National Institute of Health has – and it has many – the review process, while sometimes flawed by out-of-touch and ignorant reviewers, is not the most pressing problem for ME/CFS researchers. My understanding is that the grant acceptance rates for ME/’CFS grants are fairly typical. It’s the low grant application rates and the NIH’s unwillingness to help build this field that are our main concern. This rule will not address this situation and could make it worse.
Vague Policy Priorities
Vague policies add too much uncertainty and wiggle room into the grant review process.
The new rule requires grants that advance the President’s policy priorities – without spelling out what they are. Grants that are not aligned with the President’s “program goals, federal agency priorities, or – here’s the big one – the “national interest” can be rejected. The Office of Management and Budget (OMB) clarification that this includes changes arising from “new direction from politically accountable leadership.” suggests that the administration can use any manner of means at any time to reject grants.
If the administration specifically outlined subjects such as minorities’ access to health care and minority training programs, that would be one thing, but vague priorities that are subject to change at any time create too much uncertainty. Note that while DOGE eliminated $350 million in DEI grants, it also halted approximately $1.8 billion in grants for infectious diseases, cancer, and other areas.
Putting the fate of grants in the hands of political appointees could put political considerations above medical ones. The Trump administration has shown ample willingness to target medical research to achieve its other goals. In March 2025, the administration canceled approximately $400 million in federal grants and contracts to Columbia University. It froze or threatened to freeze more than $2.2 billion in federal grants for Harvard, including those for research on cancer, infectious diseases, and other areas. In April 2025, it froze approximately $790 million associated with Northwestern University and more than $1 billion associated with Cornell University.
These actions were taken to pressure the Universities to change their policies regarding protests, admissions, and curricula.
Should a University not support a”policy priority” of the administration, it’s conceivable that the political appointees could simply stop funding its medical research grants. Or, more chillingly, the administration, which proposed a 40% haircut to the NIH in 2025, could decide that one of its national goals is to dramatically cut NIH funding to free up funding for immigration, defense, etc., and begin rejecting already vetted grants willy-nilly.
This may seem extreme, and it is, and I would think the administration would not resort to that. In its first year, though, the Trump administration created an administrative bottleneck that prevented grant review committees from meeting, which resulted in a dramatic reduction in new grant funding.
With the NIH funding approximately 50,000 grants a year, overseeing each one also adds inefficiency and will lengthen an already overly long grant review process.
Whether the political appointees would have the skill set to assess complicated grant applications is another question. Given that the Trump administration has not always put a high premium on past experience and qualifications, it remains an open question whether it will fill political appointee positions with experienced reviewers.
These reviewers will, of course, bring their own biases to the table. Long COVID may be too big and well-known to fail, but smaller, more controversial diseases like ME/CFS, fibromyalgia, and POTS bring more baggage and are less protected. Would post-infectious disease research pass muster? Maybe it would, maybe it wouldn’t.
It may very well be that none of this will happen but the potential is there.
The NIH Can Defund Ongoing Studies Without Evidence of Wrongdoing
The new rules allow the administration to terminate ongoing studies for any number of reasons.
Until this year, ongoing research studies were considered sacrosanct. Once the NIH has committed millions of dollars to a multi-year project, it will not withdraw funding except in cases of fraud, researcher malfeasance, or similar misconduct. In other words, certain conditions had to be met for an ongoing study to be terminated.
The proposed rule would allow the NIH to dismantle ongoing research projects that do not fit the administration’s policy priorities or are not in the “national interest.
In a worst-case scenario, this could result in the NIH terminating ME/CFS or long COVID research if it decides it’s not “in the national interest” or does not fit its “program goals”.
Shutting down an entire field – even a small field like ME/CFS – may seem extreme, but this was already attempted with long COVID. Last year, someone in the Trump administration stopped and defunded all of RECOVER’s long COVID grants – most of which had been underway for years. Only a political outcry stopped dozens of expensive studies from being shuttered midstream.
The danger is that a political appointee decides that studying a small and controversial field like ME/CFS, fibromyalgia, or POTS is not in the national interest, or doesn’t align with the program goals, and decides to shift its funding into something like heart disease or cancer.
ME/CFS may not be doing great, but it does have a steady place in the NIH and is in no danger of being terminated. If ME/CFS studies were terminated, it probably wouldn’t have the political clout to counter the way long COVID did.
The idea that perhaps uninformed, biased political appointees will be able to play such a major role in determining medical research funding simply introduces too much uncertainty in the process.
Doing Medical Research on the Cheap
Attempts to divert research dollars from prestigious research institutions with the top researchers will only hurt.
The Trump administration’s budgets tried to reduce NIH funding by about 40% and 12% over the past two years. Thankfully, Congress held firm and kept NIH funding flat.
Failing that, it’s trying to find other ways to reduce medical research funding. The proposed rule, for instance, explicitly favors institutions with lower indirect cost rates. Since prestigious universities tend to be located in higher-cost urban areas, this rule could lead to cutbacks in research fields like ME/CFS and long COVID that need the most.
Every ME/CFS, long COVID, or fibromyalgia grant that goes to a researcher at Harvard, Stanford, UCSF, Yale, etc., is a cause for celebration. Why? Because these premier academic research institutions host the world’s top researchers and provide access to the best, most modern equipment. The researchers’ papers get published in the most prestigious journals. When they speak, others listen. Getting researchers of this caliber involved increases the legitimacy of these diseases in the eyes of others.
Under this rule, attending scientific conferences – which provide a fertile ground for collaboration – will only be paid for if the participation in the conference is a) “expressly approved” and b) written into the grant application itself. Since most large grants last five years, researchers will need to account for all conferences that take place over the next five years, in order to attend them.
The proposed rule also prohibits grant money going to publication costs “unless such costs are expressly required by statute or approved in advance by the Federal agency on a case-by-case basis.” You might think, well, who cares about publication costs? I know of researchers who have a great deal of trouble finding ways to pay the sometimes substantial publication.
International Research Collaborations Take a Hit
In order to thrive and maintain its leadership position in the sciences, the US needs the best and the brightest from around the world, to study and work here.
The NIH’s decision to help fund the UK’s DecodeME project may prove to be a singular achievement for ME/CFS field. Not only has Decode ME produced several important papers that have helped legitimize this field, but its genetic data is being used by PrecisionLife and other ME/CFS research efforts. Under the new rule prioritizing domestic research over international collaborations, projects like DecodeME might never have gotten off the ground.
Nativism – the desire to prioritize native born Americans over foreign students and researchers has its appeal. Modern-day research, however, is unremittingly international. Studies are often made up of researchers from a range of countries.
Because the US contains just 4% of the world’s population, if it wants to remain at the forefront of medical, scientific, and technological achievements, it needs to attract the best and brightest from around the world. (Ironically, putting hurdles in their way constitutes the very absence of the meritocracy that DEI detractors claim to worry so much about.) America’s strength has lain precisely in its ability to attract the most talented students and researchers from across the globe.
Since 2000, 40% of the US’s Nobel Laureates have been immigrants. Foreign-born PhD graduates are not taking their education and running either. A study found that almost 80% of STEM (science, technology, engineering, and mathematics) PhD’s end up staying in the US and contributing their talents. If the current rules were in place back in the 1990s, a poor Palestinian youth named Omar Yaghi living in Jordan never would have made it to this country.
Conclusion
Vague policy prescriptions, putting political appointees in charge of scientific grant approvals, defunding ongoing research studies without evidence of wrongdoing, moving grants away from prestigious academic institutions, doing medical research on the cheap, and placing hurdles to prevent the best and brightest from studying and working in the US is not helpful and could be particularly detrimental to small, controversial fields like ME/CFS, fibromyalgia and POTS.
So ends this editorial!
Commenting on the proposed rule changes
- Solve ME has provided instructions for commenting on the proposed rule changes and why commenting can be very helpful.
- Read Solve ME’s comment here.
