Geoff’s Narration
The GIST
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.)
The new rules constitute an about-face on how the US has funded scientific research.
THE GIST
- Regarding my health, it is slowly improving.
- This post – an editorial on President Trump’s proposed rule changes to scientific and medical research – presents a hot-button topic. Health Rising wades into the political arena hesitatingly and only when it affects the medical research prospects of diseases like ME/CFS, fibromyalgia, and long COVID.
- Please do not use this editorial to vent your feelings, positive or negative, towards President Trump. Please stick to the issues at hand.
- The editorial begins with the shocking departure of Omar Yaghi, the 2025 Nobel Prize winner in chemistry, from UC Berkeley to open a new AI institute in China and pursue opportunities unavailable to him in the US. Yaghi’s move was particularly alarming because he’s working on the forefront of technologies that are powering many of the important advances in science today.
- The first section concludes with the assertion that Yaghi’s departure is emblematic of a change in the US scientific landscape that has made it less conducive to research.
- It asserts that the proposed rule to alter how the US government funds scientific and medical research will only continue to lead the US down an unfortunate path.
- The US has been the foremost proponent of a merit-based approach to scientific research that relies on experts in the field to decide the worthiness of each grant.
- The proposed rule gives political appointees the last say in whether a grant will be approved. To understand how large of a departure this is from scientific norms, note that no Western-facing developed countries allow this kind of political intrusion into the scientific funding process.
- Political appointees, who are not required to have any medical experience, can reject a grant because it does not meet vague standards such as Presidential policies, or national goals, which the rules state can shift over time.
- Taken to its extreme, political appointees could reject grants from medical researchers at universities or from states that President Trump has issues with. The Trump administration has previously held up billions of dollars in medical research grants in an attempt to force universities to accept changes to civil rights, admissions policies, and curricula.
- While diseases like ME/CFS are not doing well in the NIH, they do have their place and are not in danger of losing their funding. Political appointees who bring their own biases to the table could upend that.
- The Trump administration could decide that ME/CFS or long-COVID research, for instance, does not meet its national goals and move its funding into diseases like cancer, heart disease, etc. As diseases with already low standing in the NIH, these fields would be hard pressed to combat this.
- Given its attempts to dramatically reduce NIH funding, it’s possible that the Trump administration could even decide that NIH funding is not in the national interest and simply start rejecting grants willy-nilly to free up funding for immigration, defense, etc.
- The NIH has been loath to stop expensive, multi-year grant projects absent evidence of malfeasance. The new rule allows the NIH to stop studies that are underway if they don’t meet the same vague criteria.
- This actually happened a couple of years ago to long-COVID research when someone in the Trump administration stopped dozens of multi-year Recover Initiative-funded long-COVID studies in midstream. Only after a political outcry ensued did the administration return funding.
- The rules also attempt to move research away from prestigious universities located in expensive urban centers, which require more indirect funding to less prestigious universities with lower indirect costs. The result – potentially fewer premier researchers working on these diseases.
- The rules also attempt to reduce international collaborations in favor of domestic collaborations. Under this rule, it’s quite possible that DecodeME – funded by both the NIH and UK funders, would never have gotten off the ground.
- Further rules that make it more difficult for researchers to attend conferences and get their papers published will only serve to impede medical research.
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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 and 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 – not 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 M.E. 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 costs.
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 the 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) PhDs 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! Thanks for your time.
Commenting on the proposed rule changes
- As of 5:40 PM PST, over 290,000 people have commented on the rule changes thus far!)
- Solve M.E. has provided instructions for commenting on the proposed rule changes and why commenting can be very helpful.
- Read Solve M.E.’s comment here.
As a former and succesful researcher, I am shocked by the following (from the Solve M.E.’s comment link provided by Cort):
[200.454] Memberships, subscriptions, and professional activity costs. The proposed revision to §200.454 makes the costs of all subscriptions to “business, professional, academic, and technical periodicals” unallowable. Researchers need access to the scientific literature to do their work. This is a necessity for federally funded research, no different from laboratory supplies. Preventing researchers from accessing the literature will slow progress and reduce the quality of the science taxpayers are funding.
=> Either the big instituations will have to ‘somehow’ pony up for the cost of accessing quality literature (which will be difficult as allowed indirect costs are severely cut down too) or the (often junior) researchers will have to pay for their own access to professional literature. When you choose the latter, you will only be able to compete with third world countries’ science in less then a decade. If you can’t (afford to) learn from the best in the field arround the world, you simply can’t compete at the top of the field. If you can’t (afford to) learn even the basics of your field beyond the textbooks provided by your master’s education and what is freely available on the internet, you can barely compete better then a top researcher with only 1950’s knowledge would be able to do nowadays. It’s that simple.
=> I can’t see how any person with reknown research qualifications and experience would write down such a proposal, at least if said person was concerned more with quality of scientific output then with politics or other interests.
Regardless if it is unable or unwilling to see the problems with it, that does not bode well for what the political appointees approving or disapproving the future research are likely to make of it.
At best you get a NASA-ification, meaning that goalposts are changed with every new administration. Plenty of expensive projects got terminated halfway the last decades as they simply didn’t fit into the new vision of the new leaders. Contracting and subcontracting of different parts of the new programs were often divided by Senators seeking to get a big win for a company in their home state and project specifications were often designed to make those companies the best fit for the contracting process. That frequently happened regardless of which party had the majority in Congress or Senate or delivered the president and is detrimental for efficieny.
The new proposed rules however make even a NASA-ification a far dream as long as those rules stand, regardless of who will be in power in the future.
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It “could” cause problems. It also “could” bring much needed solutions. If there hadn’t been so much waste and fraud in the past, we wouldn’t have to revisit our current policies. I’ve been desperately following research for ME/CFS since 1980. No results so far. Maybe things will change for the good.
Just saying…
Thanks Lisa,
That’s a long time to follow ME/CFS research! I didn’t start until the 90’s (lol).
Here’s what I think about the ME/CFS research funded by the NIH – it’s uniformly good. When it funds ME/CFS studies the NIH typically forms large, complex and expensive studies. I don’t see any waste or fraud – all I see are badly needed studies. The more the better.
My issue with the NIH is not with the studies it’s funding (which are the studies the political appointees would be reviewing) it’s with the unwillingness of the NIH to commit the kind of funding that’s needed to build this field. The NIH knows in spades that relative to its disease burden it is vastly underfunding ME/CFS and has been for decades.
Since it’s responsible for the health of the nation it should do something about that – and it isn’t.
My understanding is that the political appointees come in too late in the process to do anything about that. Their job is weed out not support – and I think what ME/CFS needs above all is to support (not weeding (lol). (We couldn’t handle any weeding to tell the truth.)
You could say, well if the political appointees trim out waste that could leave more money for ME/CFS but the NIH has NEVER responded to increases in its budget by giving ME/CFS more funding. In fact, there have been periods of time when the NIH received large increases in funding and ME/CFS funding got hammered.
We’ll see how this all turns out. It may be that the political appointees will simply try to weed out DEI type applications and the ME/CFS, fibromyalgia, long COVID, fields will not be affected.
I really hope so! Thanks for your reply. P.S. I don’t believe there’s been waste or fraud 8n our case but for sure in other areas. ❤️
Yes usually the studies are reasonably well done by the NIH.
Although for fraud or serious misconduct we should remember the U.S. in the late 1990s another government department had its own ME/CFS scandal. When a CDC whistleblower, Scientist William Reeves, revealed that
millions of dollars allocated by Congress for CFS research had been diverted to other
programs.
Federal investigations later found that approximately US$12.9 million intended for CFS
research had been redirected or improperly accounted for. The money had instead been used to
cover costs associated with other CDC activities, including travel, administrative expenses,
staff costs, and other disease programs. (Travel costs in government include accommodation and meals)
The issue was not just that the money had been diverted. It was that Congress had been
repeatedly told the money was being spent on CFS when investigators later found that much of it had not been. The allegations were serious enough to trigger investigations by both the HHS Inspector General and the Government Accountability Office, which confirmed the
whistleblower’s claims.
The CDC was ultimately forced to restore the money, and CDC Director Jeffrey Koplan publicly
apologised.
https://www.science.org/doi/10.1126/science.287.5450.22
However, what remains unanswered to this day is why they repeatedly chose over several years to
divert money out from just the CFS program. I think we can safely assume that they didn’t care about ME/CFS enough, and clearly didn’t see it as serious of disease as it actually is.
We have been treated appallingly for decades.
No, tearing institutions down will not help. That sort of simplistic thinking that got a highly flawed individual elected POTUS a second time.
Thank you, Harold. I feel the same. He’s ruined the USA and made us a laughing stock all over the world.
And there it is, I knew someone would end up turning something real and necessary into personal political bs. We are finding out just how much money has been diverted away from this medical issue. It is sad that so many have suffered for years without much hope of medical treatment advances.
My thoughts exactly. For decades, they’ve wasted so much money on completely ridiculous and useless pursuits that maybe this move will help reduce a lot of the bogus research and bring some needed oversight to the cash-cow “science” agencies. That would actually free-up money to be used on more worthwhile research – as long as we have open-minded and intelligent people like RFK heads of these bureaus and not the usual insiders who are there basically to fleece the system with pointless study after study to ensure they have cushy jobs to go to every day, like studying shrimp on treadmills and how drunken birds sing (“A $5 million grant to study if finches slur their songs when they consume alcohol.”)
I thought could it really be true that these studies were done? They sounded horrible so I checked those two studies out. As so often occurs, there’s more than meets the eye.
“The scientific rationale was not simply to discover whether drunk birds “slur.” Zebra finches are one of the relatively few laboratory animals that learn their vocalizations, making their brain circuits useful for studying learned speech-like motor behavior. The researchers wanted to establish whether finches could serve as a model for studying how alcohol disrupts the neural control of human speech.”
That grant was in 2014
“But they were not primarily investigating “how fast shrimp can run.” The treadmill functioned much like a human cardiac stress test: it created controlled physical activity while researchers measured oxygen use, metabolism, fatigue, and the effects of bacterial infection, low oxygen and elevated carbon dioxide. These questions relate to disease, coastal environmental conditions and commercially important seafood species.”
That grant was in 2006. Both studies have been used as punching bags by the right to destroy the public faith in scientific research for over a decade.
One was focused on humans, the other on the environmental impact of polluted waters on commercial fishing.
While I understand your overall concern about waste, this blog was mainly concerned with the idea that ME/CFS, long COVID funding might be affected by biased or unknowledgeable political appointees.
Honestly, I love the ME/CFS NIH grants. They are fine grants and we need more of them!
How tragic it is, that people who try to advance science and do some good in this world, are later remebered is such ridiculous ways because the less educated among us saw it in a funny facebook meme.
These kind of studies always seem weird for people often not having a clue about the scientific process of research. How many times in the history of science a fundamental scientist has made a research in a given field and has found or developped something apparently totally useless ? So many times… Then a couple years later another applied scientist faces a problem with apparently no solution and finds that the weird reasearch done by the other guy is exactly the answer he needed. Any research is valuable. Of course, when the money is rare one must prioritize based on the biggest bang for the buck but nothing is ever useless.
RFK is open-minded and intelligent? Good lord. 😜
I’m sorry Cort, but this comment section is not user friendly. I left a comment the other day and it’s gone now. It’s frustrating for me so I’ll bid everyone goodbye and good luck. Trump and his Regime are a terrible scourge. Iran is looking for him. Good luck 🇮🇷
He actually is, and what your comments demonstrate is that you are not.
Too bad you’re in a CULT of Personality. Please seek professional help. MAGA is going down…down… down…and will soon disappear. You’ll be on the wrong side of history.
RFK is open-minded and intelligent? 🤔
As an outsider to the US, I’d think that a system where political appointees decide upon grants would be much more prone to fraud, corruption and lobbyism than when decided by an independent scientific panel. Because it would be so much easier to bribe just one appointee rather than a whole panel, or give a grant to, say, your golf buddy rather than his competitors’ better applications. One might end up with the type of fake research aiming to prove that environmental toxins were harmless or smoking were good for you.
Also, research knowledge can be highly specialised so that one would need to have an in-depth understanding of the scientific field and its technical terms and theories first to judge the importance of a new grant proposal. It seems unlikely that a political appointee would always have the scientific knowledge of the subject-matter required for this.
That (as pointed out be dejurgen above) the fine print of the proposal does not seem to get the basic reality that researchers need to read/study other published research and that’s the way scientific knowledge advances by building on previous findings (which is as if lawyers were not allowed to study previous rulings) does not look hopeful to me for the scientific competence of the proposed political grant approval process. I’ve read about both another US politician and the President mistaking transgenetic mice in cancer research for “transgender experiments”, and well, just saying you’d be better of with a bit more in-depth knowledge when judging grant applications.
That being said, I’m okay with political bodies providing special funding programmes for certain fields of research, also as a corrective to when research has slept on fields such as ME/CFS. That’s not what’s being proposed here though.
No offense, I only mean this in the most literal sense, but as a non-citizen your opinions and comments in the matter are not relevant. I’ll just say for the sake of perhaps helping your thinking in regard to your own country that the notion that scientists are somehow necessarily immune from their own internal politics and corruptions of all kinds – including from industry – is naive and in most cases counter to reality.
STFU Trump-Bootlicker. Miss Lindsey, Mitch M. the Turtle, and soon to be… Mango Mussolini. Just deserts… We desperately need age and term limits in our government. We’ve got old fossils into their 80s. These positions serving the American people were never meant to be life long appointments. Too much chance for corruption. We’re seeing it now with Trump the war monger-grifter and his family-robbing us blind. Yet the orange deity’s faithful sheep follow along and hang on his every word-salad. 🤮
Thanks for your reply. I did not say that I think all scientists are somehow necessarily immune from their own internal politics etc., you’ve assumed there. But I don’t think this would be an argument against what I wrote.
To me, politics deciding what may not be researched – and in particular without any criteria for this – feels like an unprecedented state overreach limiting a fundamental freedom that is important for producing an objective science base in my opinion.
I agree that for example sometimes new theories have a hard time competing against established scientific views, as happened with ME/CFS as well as for the infectious origin theory for Alzheimer’s. But I personally don’t think a proposal like this would necessarily fix this.
I have severe ME/CFS and unfortunately no leftover energy at all for further discussion, so I’ll just wish the best of success for future US ME/CFS grant applications!
👍
It’s an acceleration of America’s decline in Research and Development — which Biden tried to reverse betting big the Green economy, but Trump’s administration has gutted those efforts — while other countries, particularly China, invest heavily in R & D. The US still relies largely on consumer consumption, and on speculation schemes, including AI, for growth.
Still, the Dr. choosing the US’s rival is not excusible, despite his rationalization. He clearly did not view himself as American.
Im English and dislike trunp wholeheartedly, but during bidens time in office, it seems like people with m.e had no support either.
Plus ca change?
It’s true! The Biden administration was not interested in ME/CFS – and our funding declined during it. In general ME/CFS is too small a topic to reach the White House – our funding is more an effect of the internal politics in the NIH – and our inability to get Congress to force the NIH to provide more funding.
The Biden administration did help ME/CFS indirectly, via long COVID support. The Biden administration basically rescued the RECOVER program by pumping over $500 million into it. RECOVER has a lot of problems but it is funding some very good external research and some good clinical trials
Maybe someone in the US should do a cost analysis for ME/CFS & Long Covid, similar to the one that ME/CFS Research Foundation funded for Germany? https://mecfs-research.org/en/costreport-long-covid-and-mecfs/ ? “In 2025 alone, Long COVID and ME/CFS cost €64.4 billion, equal to 1.44 % of Germany’s gross national product (GDP) the same year.” “In total, more than 1.4 million people in Germany were living with either Long COVID or ME/CFS at the end of 2025.” Extrapolating by population size of US vs Germany (times 4.1) and not accounting for possibly different cost conditions in the US, this might put US societal costs at around 257.6 billion per year, equalling 5,74 million patients and about 0.84 % of US GDP of 30.77 trillion in 2025 (if I calculated correctly).
There is a difference in the cost to the whole country versus the cost upon each individual. For the whole country, not being able to treat people with ME/CFS and Long Covid is a loss to the economy. But that masks individual and diverging interests.
For the ill individuals and their family and friends, investing more in better research, diagnosis, treaments and care is a direct win. For the majority of people unaffected by ME/CFS and Long Covid, it is likely a decades long investment that will cost them now in the form of increased taxes, increased budget deficits and decreased government services due to money diverted away from things that benefit them directly. For insurance, both private and public, better diagnosis is going to cost billions to trillions on paying for better medication, care and disability income.
=> Without explaining why it benefits the general public early on or having sight on many ME/CFS and Long Covid patients being able to return to work quickly, it’ll remain a though sell.
Thank you for your reply! As far as I can tell from this link https://mecfs-research.org/en/costreport-long-covid-and-mecfs/, the model included both costs to the individual and costs to the country. “Specifically, the model calculates the following costs: production disturbance costs, human capital costs, medical costs, administrative costs, travel costs, support and assistance costs, deadweight costs of transfer payments, and quality of life and well-being costs.”
The cost analysis did have media attention (e.g. reporting by Manager Magazin (a major business magazine) or Ärzteblatt (a key doctor’s publication), so at the very least, it created awarenessfor the scale of the problem.
So if I understand your comment right, you’re saying the public might think that while those with ME/CFS would benefit, it would mean additional cost for the rest of the population, thus a tough sell? – I think the abovementioned cost analysis would probably argue that people being sick with MECFS/LC causes costs for everyone right from the start, which would go away if people were treated, such as (I guess): Loss of taxes due to loss of income, loss of consumer taxes, much more loss of taxes due to carer relatives not being able to work; and – which I meant by “not accounting for possibly different cost conditions in the US” – in Germany, with public health insurance and possible public health pensions (not easy to get, but still), every sick person puts a strain on public health insurance from early on (contributing to the need to increase health insurance premiums for everyone) or uses tax payers money if awarded a public health pension. Maybe, also in the US an analysis could find such costs that affect the community from early on, and would go away if there was a cure?
But I’m not sure if the public would always look that closely at such numbers with regard to “how exactly do these costs affect me?”
I tend to think that sometimes a simple number can be quite convincing, such as in arguments that have been made in Germany: That the 500 Mio research funding over 5 years is but a droplet compared to the overall yearly societal cost of 64.4 billion of these diseases”.
(I’ve also seen the “ME/CFS can affect anyone” and “future pandemic preparedness ~ national security)” arguments used.)
Hi JR,
Let us look from the point of view from the non-affected people: the healthy people and governments and insurance.
For them, starting to seriously invest in this disease in practice is very close to admitting that we suffer from a serious disease and need help with medication and disability income.
That, especially disability income, will be massively costly to society from the moment society takes this illness as the very severe illness it indeed is.
That will get near nobody healthy enough to work in the first few years due to lack of existing effective treatments (and near zero high chance candidates for such treatments becoming widely available in the coming years).
Therefore the first few years after taking this disease as serious as it deserves to be taken we have:
* extra cost: millions of people need to be granted disability income for years to come.
* extra income: very few people get back to work due to lack of effective treatments.
=> net effect the first years: a heavy rise on economic costs to government and insurances (with relief for affected patients and their beloved ones).
The next few years, chances are high that bit by bit only partially effective treatments come up. Those medications will likely be rather costly, but likely will get few people back to work. Then we have:
* extra cost: millions of people need to be granted disability income for years to come plus insurance covering their expensive medication.
* extra income: a minority of patients get back to work due to lack of only slowly improving treatments.
=> net effect the following years: a heavy rise on economic costs to government and insurances (with relief for affected patients and their beloved ones).
Only in time, when sufficiently effective and affordable medications become available and when better prevention decreases inflow of new cases, the non-affected masses (tax payers and insurance payers / organizers) will see net *economic* gains to *their* purses in return for their years / decades of heavy investments.
That is IMO the problem we face: the turnover point where unaffected people get more back then they contribute is likely to be measured in decades rather then years. Before that point, it is a massive shift of our financial burden to their purses.
No, I get what you’re saying. And notably, in Germany, the cost analysis was first published in May 2025 *after* the disease had kind of already been officially recognised in the German public health system (which one could argue happened first in Jan 2023 with a revision to Fatigue Guideline, and May 2024 with public care directives re. LC & ME/CFS). So, the analysis was probably made by ME/CFS Research Foundation not in order´to argue for recognition of the disease in the first place, but to argue for more research based on the costs already established as a practical consequence of the disease having been officially recognized at least on paper (if not always in practice).
So maybe the timing of such a cost analysis matters, too.
German news (searched via Google News with search word “ME/CFS”) these days seems to be full of a neverending parade of compassionate reporting on patients’ plights and need for better care. There are also media reports on support projects for ME/CFS being started from within society, such as charity runs, soccer initiative “Empty Stands”, or today’s headline of a local newspaper “Solidarity action at Mühlheim school – A sign for Luis’ disease”, where students lay down on the ground for a minute of silence in solidarity with their classmate. So – at least as far as news can reflect public opinion – something seems to have gone in the right direction. I hope it goes on.
At this point I an happy to hear when any scientist is leaving the USA for better opportunities, where they will have access to better tools, funding, and support.
Trump’s administration has been very clear in its intent to halt medical investigation and innovation, I have given up on the idea of a solution to fibromyalgia and long covid comings from American research since he came back into power.
Medical progress needs to move forward, and there is no reason to expect significant advance coming from the US any more. As long as research keeps going around the world, we all gain from it.
The worst that could happen would be to keep the best scientific minds in a country where they cannot live up to their potential, wherever that may be.
Of course, I would have loved if any of this could have been avoided, but since this is our only reality, the brain drain is the most logical and helpful outcome that can come out of this situation.
I agree with you.
The German government has set aside $500 million over the next 10 years for research and development into cures/treatments for ME/CFS. I feel it’s not enough though. I’m trying to stay positive and hopeful nowadays but living in the USA and what we’re dealing with under Trumps Regime, makes it hard. (Comment removed – rather insulting to President Trump)
It’s not enough – but its very good – and provides real hope. Now we need the US to get on board with some significant funding. THAT would make a real difference.
What’s wrong with being insulting to Trump? He’s an idiot, a horrible human being, who deserves no respect, who is making life worse for many people around the world. He may be USA’s president, but unfortunately for us outside the USA he’s making many lives worse with his actions.
Well sure those are just some of the more well-known ones off the top of my head. But if you think that kind of thing hasn’t been going on regularly for decades, probably with thousands of like examples, I’m not sure what to tell you.
I’m not even sure why we would need studies investigating effects of alcohol on speech, people have already been familiar with those effects for a few millennia at least lol. Someone needs a job, I guess – at our expense, and at the expense of better and more productive research.
Let’s trim it down and study stuff that matters, including the things they don’t tell us, like how according to U.S. government data measles and nearly every other disease we vaccinate for were seriously declining to almost none for decades (because of better sanitary and health conditions), and how vaccinations for those things actually weaken the immune response causing life expectancy actually to DROP for people who got vaccinated.
I wonder how many people with ME/CFS were vaccinated? How do we know that wasn’t the “silent trigger” for developing the disorder later? That’s some research I’d like to see. I don’t really care about drunk birds, lol.
I just think the reasoning is flawed because the funding all comes from/needs to be approved by politicians anyway, who are typically in the pockets of Big Pharma and other interests.
(Part of comment removed – conspiracy thinking)
So to suggest that because politicians would need to approve studies that would be likely to lead to increased bribes, corruption, etc. isn’t really logical. They’re bribed and corrupted already, lol, as the facts already show. It might actually lead to the reverse as their sweetheart deal projects get sidelined instead of fast-tracked. Some oversight into some of the more egregious and ridiculous “research” to save us money that could then be applied to more sensible studies can only be a good thing, imho.
Your reporting is rather one-sided Rick! I looked it up and pharma gives contributions to both parties.
“Multiple outlets and OpenSecrets data show pharma giving is not monolithic: in 2023–24 the sector gave to both parties, with some reporting that PACs and employees favored Republicans overall in that period while other company PACs leaned differently; BioSpace reported pharmaceutical PACs gave roughly $5.2 million to Democrats and about $6.6 million to Republicans through 2023–2024 ”
https://factually.co/fact-checks/politics/house-top-beneficiaries-pharma-pacs-2024-5efc3c
There’s a bit too much conspiracy theory in this last post for Health Rising, by the way, and that part of your comment was removed.
If the system is already corrupted how does it help to provide a rather massive new opportunity for corruption by allowing political appointees the opportunity to have the last say on every scientific research study funded by the US! That only allows for MORE corruption, not less.
As I pointed out, ME/CFS and long COVID studies all constitute good research, in fact, very good research. Our best studies are taking place in prestigious (and expensive) Universities that these rules want to stop funding. FOr me, I want researchers like Ron Davis (Stanford), Akiko Iwasaki (Yale), David Systrom (Harvard), Maureen Hanson (Cornell), Liisa Selin (Harvard), Mark Davis (Stanford), the LIINC project (USCF) to thrive. All of them (and others) could get hit by the move to direct funds away from these top universities. That’s where the best science is done. (Is that what you want?).
Yes, theoretically its possible that if the NIH had more money by stopping “ridiculous” (to you) studies, it would then have more money to give to ME/CFS but that’s never happened in the past. During times when the NIH budgets expanded dramatically, ME/CFS funding actually dropped dramatically. There’s no reason to think that ME/CFS would benefit.
The best that could happen with these rules is that the vetted ME/CFS, FM and long COVID grants would still go through. The worst – that someone in the Trump administration doesn’t like these diseases and starts rejecting them or whatever reason. I can’t see any upside in these rules for these diseases.
Historically it’s been nearly even, with gop getting slightly more overall. But Dems have now taken the clear lead (comment deleted – party bashing – not pertinent to topic). Trump wants Medicare for all, like the Australian system, one of the best healthcare systems in the world. But let me guess, Trump bad, right? (Comments deleted – calling people idiots). You can’t make it up, lol! Here’s the output from grok to substantiate my comments:
Key Data from OpenSecrets (Pharmaceuticals/Health Products Industry)This category includes drug makers, medical products, etc. Contributions come from PACs (corporate funds) and individuals (employees/executives).
opensecrets.org
2023-2024 cycle (most recent full data): Democrats received noticeably more overall. One breakdown showed roughly $26.4 million to Democrats vs. $16.1 million to Republicans.
deseret.com
PACs specifically: ~$7.1 million to Democrats and ~$8.9 million to Republicans (slight GOP edge from PACs).
opensecrets.org
2022 cycle: Democrats ~$24 million vs. Republicans under $16 million.
nypost.com
Presidential 2024: Kamala Harris received significantly more from pharma manufacturing sector employees (~$1.7M) than Donald Trump (~$300K).
pharmavoice.com
Longer-term trends:Historically (e.g., 1990s–2010s): Republicans received more, often ~55-65% of contributions. From 1990 to early 2023, Republicans had a slight edge overall (~$167M vs. ~$162M to Democrats).
nypost.com
Shift around 2020: Democrats pulled ahead, coinciding with control of Congress/White House and policy fights (e.g., drug pricing).
pharmavoice.com
Did you happen to notice who got drug companies to drastically lower their prices using the favored nations clause? It wasn’t br Dems, lol
Thanks for digging into it more Rik. If you throw my figures in there I see Democrats with a small lead and the parties basically jockeying back and forth.
Again, though, I don’t think you’re being totally objective. I asked ChatGPT to compare the work Biden and Trump did to reduce prescription drug and medical costs. It’s a complicated subject and both did some good things – (and Trump did one really bad thing IMO) It’s conclusion
“For prescription drugs, Biden has the stronger record of completed, durable cost reductions. His reforms apply particularly to Medicare and include direct negotiation, an annual out-of-pocket ceiling, insulin limits and inflation rebates.
Trump deserves meaningful credit for developing the voluntary Medicare insulin model, expanding price transparency, signing the No Surprises Act and aggressively challenging international drug-price disparities. But most of his first-term headline drug-pricing proposals did not become operational.
Trump’s second-term drug agreements may eventually rival parts of Biden’s program for selected drugs or cash-paying patients, but there is not yet enough independently verifiable information to conclude that they have produced broader savings than the Inflation Reduction Act.
His 2025 law is projected to make medical care less affordable overall by increasing premiums or out-of-pocket exposure for some people and leaving roughly ten million more uninsured.
A person saving several hundred dollars on one prescription but losing Medicaid or a large ACA subsidy can easily end up thousands—or tens of thousands—of dollars worse off.
So, judged broadly on access to affordable medical care, rather than on a few selected drug prices, Biden’s record is considerably stronger.”
I cannot find any indication that Trump wants Medicare for All or has done anything serious to implement that. All I could find is that he opposes it. He does want to repeal Obamacare….
I, too, really question his ethics and deciding to work for a nation that is antithetical to the ideals of America. He’s been here for 30 years – this country has been VERY good to him – and he goes to China of all places. Not good in my book either.
This is how some researchers are – their number goal to do their research! Big red flag – we need to retain these people.
Hi Cort, as I recall what actually happened is that Trump in his first term initiated a Most Favored Nation (MFN) action to reduce drug prices. A left-leaning circuit court ruled against it, purely on procedural grounds, not substantially on the merits. When Biden then came in, he shut it down totally, and initiated his (?) his handlers’ own action on drug prices – which Trump left in place and even strengthened, I believe. And then Trump went a step further and RE-initiated his MFN thing to reduce prices even further. So it’s not all clear cut, “dem good, trump bad” as the majority leftist media likes to portray.
Trump praised the Australian healthcare system when the Australian PM was visiting here in 2017, in Trump’s first term. The Aussie system is essentially a “Medicare for All” type of program that gives excellent coverage and results, with some of the highest life-expectancy numbers in the world, I believe. Since that meeting, he’s mentioned the Australian system many times, including during Oval Office press briefings when he’s signing executive orders, which I’ve heard him say with my own ears.
The problem (one problem) has been the democrat ACA has been raking in so many hundreds of billions of our tax dollars for the health insurance corporations – which they then kick back to the politicians’ pacs, campaigns, etc. – that of course they’re reluctant (to put it mildly) to institute a “Medicare for All” Australian-type of program here, despite the rhetoric of people even further left like Bernie Sanders. They don’t want that cash cow to dry up, so naturally they squash any moves toward doing that and instead demand we subsidize their ACA scam to the tune of more than a trillion dollars. If Trump had his way, I’m certain he would institute a M4A system like Australia’s. The dems are profiting way too much to allow that to happen. You have to wonder and be a little suspicious when mainstream dems adopt all the crazier non-monetary leftist positions – transgender issues, etc. – but not the monetary ones like a Sanders’ or Aussie M4A. Of course not – they’re raking in billions!
It seems understandable to me that someone goes abroad either to go on the adventure of experiencing a foreign culture, or because living or working conditions at home are becoming much too uncertain and adverse. A March 2025 Nature poll found that 75% of 1600 US scientists who responded to the poll were considering leaving due to the changes related to the new administration https://www.nature.com/articles/d41586-025-00938-y. Have also heard about people leaving from a friend in biochemistry.
Horrifying. Scientific innovation is (was) our superpower…
Appreciate you drawing attention to this topic! I agree that this is extremely concerning- federal grants should be reviewed and approved by scientific peer review (panels of experts with extraordinary amounts of specialized training and experience), not political appointees.
I would like to offer a reframe on how this blog post approaches this topic, however. Science is, always and inherently, political. The topics that are chosen for funding, the kinds of scientific questions that get proposed, the methods used to investigate those questions, the analysis that we base our scientific conclusions on: all of these facets of the scientific process are political, and are shaped by structures of power and oppression like racism and sexism. The trajectory of ME/CFS research over the past few decades illustrates this point very well. For a long time, ME is/was a highly psychologized disease- not because of conclusive research findings demonstrating that this is a psychological rather than physiological disease, but because that’s how ME been portrayed politically. This psychologization (that is, the politics and sociocultural biases surrounding ME/CFS) is a huge reason why ME research is so underfunded in the first place, and why often-harmful treatments (like graded exercise therapy) were the only official recommendations for ME patients for many years. The fact that science is political doesn’t undermine the scientific method or render its results less accurate. On the contrary, when we understand the political forces shaping scientific inquiry, we are able to draw more robust, holistic, and accurate conclusions.
Advocating for more ME research, and reviewing and summarizing the ME research being published, is fundamentally political. Now, Cort, I’m not advocating for you to start posting more overtly “political” content about the current federal administration, or pushing back against your (very reasonable) request that commenters stick to the topic at hand and not bemoan party politics. Thanks for covering this important issue and I hope your health continues to improve!
Thank you so much for this thoughtful post! I am getting my masters in social work and you spoke to my heart with how social issues and stigmas intertwine with scientific research and government and healthcare.
Please do not pass the law to allow Political Appointees to determine what medical research is done. This needs to stay with the scientific Community. People suffering need cures and treatments to be found, even if their disease is rare. My son has been sick for 14 years and some politicians could cut off any hope for a cure! That is not only Un American, it is inhumane!
This is totally unacceptable. Science/Medicine should not be politically biased but it will be under this plan. This impacts every single research dollar regardless of illness. I for one am outraged that we are asleep on this one. Every American will be impacted and should be concerned enough to do something about this!!
If this goes through we will go from Science/Medicine Research to Pseudo Science /Medicine Research!!
I left a public comment on the Federal Register a few weeks ago, thanks to the alert by the Solve ME Initiative. Thankfully, we are not the only ones outraged, as you pointed out there are over 70,000 comments. The links you provided at the end are very helpful. If one leaves a comment, please put in the section # in brackets, so they will be forced to take the comment seriously. Will this administration listen? We will find out, thank you, Cort, for so eloquently explaining this concerning possibility.
I would also like to point out that MECFS, Fibromyalgia, and others, could very well fall into the “dei” category, as they affect majority women. Someone may just see the word “women” and claim dei, especially if they’re just looking to cut any funding. And you’re right, we unfortunately just don’t have the large enough backing to be taken as seriously as other diseases (a whole other level of scandal).
My final thought: this is one of the stupidest things this administration could be doing if they truly wanted to make America great.
The DEI possibility is a fear I have. I checked out of DOGE had targeted gender research as relates to biology and it did not. It appears that the NIH deeply understands that gender disease and is firmly committed to studying that.
How a possibly unskilled and possibly biased political appointee might view these controversial, female-dominated diseases is a real concern. Things might be fine – we just don’t know.
If DEI so great, why do we have so many incompetent doctors ? Success in any field , especially when a human life depends on it , can only be achieved based on merit and not color, race , religion , or ethnicity
Oh my. Doctors have to pass the same criteria whether they are male or female, white, brown, black or blue.
In order to enter medical school everyone has to pass the MCAT test. After the first, second and fourth years of medical school prospective doctors have to pass the a 3 step test called the United States Medical Licensing Examination (USMLE).
Then they have to complete residency – which takes several years – and pass another standardized test.
(I’ve seen my share of incompetent white, male doctors, by the way)
Cort I don’t know where you’re living , but regardless , I’m assuming you don’t have same problem with doctors as many of us , because of your connections . Try to find a doctor that knows much about me/cfs in San Francisco where I’m living. Most of them don’t know much or don’t want to know . During last 10 years I’ve had 5 GP they were Indian, Chinese, middle easterners. white . I can’t say any of them been a big help , but regardless , I didn’t leave them , they left California. I’ve been referred to two different rheumatologists and two different endocrinologists I was rejected by all 4 without explanation . I assume it would be different for Nancy Pelosi or Gavin Newsom . It is not all about federal government , it’s more about state you live in and state regulations . Doctors do not communicate with each others , as it use to be , so it doesn’t matter if they worked hard to pass the exams . The doctors I have had experience with don’t know much and didn’t care. The medical system here is really bad . Cort , I hope you’re feeling better, and I also hope you can understand my frustrations .
Sofia,
Try to get doctor & other needed referrals from your local and statewide patients’ organizations. They know who gets our illnesses and can also suggest other services. I needed transportation and meal delivery for my first 5 years of CFIDS/ME. Please don’t give up.
Thanks for your reply and explaining what you investigated. I was concerned about previous cuts as well. Hopefully the administration actually listens to these valid concerns and scraps the whole proposal.
Thank you for your advocacy.
Without this professional support misdirection of funding and treatments will be the only outcome to the detriment of those in need.
Hearing that billions are being spent on the military industrial complex and on illegal wars is galling, when so many people would be healthier with that same money spent on research into the human conditions we inherent.
That has to be the real battleground.
This is very nieve and completely ignores the self-serving people for decades running the totally messed up US health system with most of these so called experts in the pay of the self-serving pharmacutical companies. This is the first US President has done something serious to restore th US health system.
I check out what affiliations ME/CFS and long COVID researchers have frequently. I rarely – very rarely – see any with ties to pharmaceutical companies. (There’s probably a reason for that – pharma is not interested! (lol)). If this is a problem, it’s happening elsewhere.
Your president has it’s sights on eradicating our Australian pharmaceutical benefits scheme (PBS) for the sake of company profits. In essence he doesn’t like our government doing deals to get Australians cheap drugs. He’s not protecting people, he’s protecting business profits! This is bad news for us. Government needs to stay out of healthcare and religion.
If the issue with financing, not a political, why is it the only name Trump appears now ? Is it because the administration is fighting fraud ? He is in White house since January 2024 . I been following the information on ME/CFS research since 1995 and all I’ve heard was about slow progress was shortage of funding. No one was asking or looking into it during Obama Biden era and why Fauci’s director of NIAID annually income was $485.000 plus bonuses from big Pharma during COVID. Fraud in government is everywhere more or less . Please don’t say this article is not political
I didn’t say the blog was not political – quite the opposite – at the start of the blog I said it was political and that Health Rising rarely did political blogs because they hardly ever impact ME/CFS or long COVID.
Biden or Obama never became the subject of a blog because neither of them proposed these kinds of rule changes. If they had, I promise you they would have gotten a similar blog!
“If the issue with financing, not a political, why is it the only name Trump appears now?”
A) I don’t see any way these rules would help the NIH to fund more ME/CFS studies. They only thing they can do is shut down research – not increase funding for it. My concern is that these rules could kick out studies we might otherwise have gotten.
B) My concern is that the Trump administration is proposing rules that could possibly – hopefully not – but possibly could undermine ME/CFS, long COVID work.
It already did it once when it suddenly stopped dozens and millions of dollars’ worth of Long COVID studies in midstream. After a political outcry occurred, it backtracked.
That had never been before, before. The NIH (or whoever ordered it) had never stopped studies in midstream like that. It was completely arbitrary – no reason was given for it. It was clear that someone in the Trump administration didn’t believe in funding long COVID – and long COVID is pretty popular.
Doesn’t that give you some concern? ME/CFS doesn’t have nearly the clout that long COVID does.
Now the Trump administration is saying that it’s OK to stop any ongoing studies for the vaguest reason – and that those reasons could change overnight. It’s also OK to reject grant applications for the vaguest reasons.
That’s very different – and that’s why this blog was produced.
I think all of us experience unexpected moments during which we are grateful for our illness.
One of the upsides of being so sick is it becomes easy to rise above partisan politics. I’m quite eager to bulldoze my way past anyone who impedes progress in funding/research/awareness.
Peace.
“I’m quite eager to bulldoze my way past anyone who impedes progress in funding/research/awareness.”
🙂
It seems to me that the bigger a system is, or the bigger a person is, the more corruption it (or they) can hold.
IMHO, this is petty much unavoidable. I appreciate Cort taking on the topic, knowing full well what he is exposing himself to, not just in these comment threads, but in the minds of his readers. It seems to me has done so with tact and grace…thanks for that. I don’t see an axe being grinded in this article.
As usual, when you cut through all the position-taking and reactivity, most of us agree on most of the same stuff most of the time. It is in the self-interest of an organization or individual in power to make us forget that.
The precedent I see Cort describing is that new leadership–for hubristic reasons or manufactured political reasons–will institute massive, sudden shifts. Along with the wasteful or misguided pursuits, the potentially impactful ones will all be abandoned. When new leadership takes power it will all happen again (but in reverse). And the experts whose research babies are killed are going to spend their valuable time and resources just looking for better environments in which to do their work.
I lost my GP last week. Instead of spending his time and energy on helping patients, he is spending it on relocating to Canada. The corruption of leaders and systems (i.e. the U.S. health system and all its bureaucracy/litigation ) sent him packing.
Man, I don’t know about the rest of you, but I need HELP. I want the researchers–no matter who they work for–and the leaders to see us not as tokens in a two-sided argument, but as people who are experiencing immense suffering.
Peace.
Thanks, Brian – sorry to hear about your practitioner! Why the NIH doesn’t respond to the suffering that it well knows is present in ME/CFS I don’t know. Honestly, I would have thought that Komaroff’s study in the 90’s showing the functionality in ME/CFS is much lower than even heart disease and multiple sclerosis would have changed things. The NIH has just seemed immune to these arguments.
I vividly remember thinking that when I went from a very healthy, very active person to quite the opposite that if that could happen to me, there must be a team of researchers working hard to figure out what could have gone wrong. Boy, was I wrong.
We are certainly making progress but it is so much slower than it could be.
Health Rising will have a doctors map up soon. Hopefully it will help you find someone.
“Why the NIH doesn’t respond to the suffering that it well knows is present in ME/CFS I don’t know. Honestly, I would have thought that Komaroff’s study in the 90’s showing the functionality in ME/CFS is much lower than even heart disease and multiple sclerosis would have changed things.”
The depth of our suffering shows how far we are off from being ‘fully functional’ human beings again. That combined with the high heterogenity and complexity of the disease is a good indication that it would be a very long and expensive endeavor (before the investment finaly begins to yield *economic* returns) to try and truly commit to this disease. Maybe that explains it.
The complexity probably plays a role but I think most of it buckles down to good old bias. The NIH spends hundreds of millions of dollars year after year on large diseases. It can afford to spend $50 million a year on ME/CFS. $14 million/year or whatever it is just pitiful.
Thanks for the clear explanation and links! I submitted my comment today.
You are one of over 300,000 people who did so! Isn’t that something? I wonder if the number of positive vs negative comments will be assessed?
Scientific grant approvals need to stay in the hands of peer-reviewed panels, not politicians. I believe that this country needs to improve on attracting the brightest minds for research or we will continue to fall behind countries like China.
As a German, just saying that when people sat down in 1949 to give Germany a constitution that was as dictator-proof as possible, they included “Freiheit der Forschung und Lehre” (freedom of research and teaching) as a fundamental constitutional right, limited by the values of the constitution itself.
When political appointees decide on grants as proposed, this seems to limit academic freedom beyond just public grants, because – as described in the examples in this article – withholding public funding can be used as a means of pressure to influence what kind of research universities can do even outside the public funding domain.
I’m okay with political bodies boosting select priority research areas through extra funding programmes, also as a corrective to when research has slept on topics such as ME/CFS. But that’s not what is proposed here.
Good point. Politics does drive spending in many countries including the US. A country chooses a direction to go and then funds it. The difference is that after that choice is made, the experts decide which studies to fund – not political appointees.
I first became ill in 1982 with what was later diagnosed as ME/CFS.
These are the administrations that have been in office over the more than 40 years I have been sick. I am not aware that any of them supported research to move the needle on the cause or treatment of ME/CFS
Ronald Reagan: 1981–1989 George H.W. Bush: 1989–1993 Bill Clinton: 1993–2001 George W. Bush: 2001–2009 Barack Obama: 2009–2017 Donald Trump: 2017–2021 – Joe Biden: 2021–2025 Donald Trump currently
No, I don’t think it is a good idea to have political appointees oversee what gets funded, but don’t kid yourself, the powers-that-be already control what gets funded and more important what gets published.
In our case, the powers that be are the people at the NIH who decide whether to fund large grant opportunities. We saw ME/CFS funding drop to staggering lows before Francis Collins boosted it up into about where it was now. I believe that was during Obama but it doesn’t really matter who was President. Presidents rarely get engaged on that level.
The unwillingness of the NIH to provide to paid for, large grant opportunities to ME/CFS is the problem. The fix for that is Congress. Advocates are trying right now to get that into next years appropriations bill.
Wasn’t it Barack Obama who promised to do something about ME? Some time ago. He didn’t do anything either.
The president has a direct and significant role in running the NIH. The president nominates the NIH Director—who requires U.S. Senate confirmation—and the agency operates under the broader Department of Health and Human Services (HHS), whose leadership is also appointed by the president. Through these appointed leaders, the president directly shapes the NIH’s overarching goals, strategic priorities, and policies regarding which types of biomedical research are emphasized or funded
This is deeply worrying, especially for people with complex or poorly understood illnesses who already depend on sustained, independent research. Science works best when funding decisions follow evidence and expert review, not political convenience, and weakening that process could slow progress when patients can least afford more delays.
President Trump proposed that political appointees review NIH science applications in an executive order signed on August 7, 2025.The order, titled “Improving Oversight of Federal Grantmaking”, directed federal agencies to designate senior political appointees to review discretionary grants to ensure they align with presidential priorities. It explicitly instructed officials to stop routinely deferring to traditional peer review recommendations.
Why is Health Rising just now raising this issue nearly one year later?