Impacts of the 2024 change in US government on ME/CFS and Long Covid

"The indiscriminate and ill-conceived slashing of indirects by the @NIH
yesterday must be amended if want to restore America’s leadership role biomedical research."

This is the sort of statement that gets up my nose. So all they are really interested in is being top dog, not advancing science for the benefit of sick people. Who cares a squidget about whether America has a leadership role. Sorry mate but it hasn't actually had that role for nearly twenty years now.

 

well, not that much older than me! I think the point here is that their goal is specifically to create havoc at all major research universities, which they view as the academic arm of the deep state.

 

Yes, well, having been close to politics in major research universities in the UK I think that might not be too far off target. Over the last thirty odd years genuinely academic institutions have been taken over by commercial empires dedicated to protecting cliques of largely second rate people. A few creative scientists win out and probably more in Northern Europe and Australia than the US. In my old field the NIH achieved nothing for forty years.

In fact I have a strong suspicion that it is the cliques of the intelligentsia, often with attachments to Harvard or whatever, that are the real target of the 'deep state' rhetoric. Clever people are a nuisance if you want to make loads of money.

 

Chaos is a by product, useful but not the main objective. There seems a pretty clear intended outcome: with reduced costs directly claimable on the grant fund, University administrations would reduce all 'included services' to researchers beyond the very basics of administering the grant - accountancy, legal and HR; everything else from power and broadband to tech support, lab time and use of high end equipment will be charged the Grant holder, quite possibly via multiple different contracts. The researcher will end up having to mirror all the institution's admin to keep control of the Grant expenditure. Waiting in the wings of course will be Project management companies with apps and remote assistants, offering snowed under researchers some relief. Companies like, for example Palantir.

Of course this is more than a simple 'contracting out' initiative, the aim is to have control over research per se and especially the meta data of the overall research fields so that AI (with progammed biases) can direct funding choices that meet the policy commands of the Federal Government.

There is a major impact on ME/CFS research in all this - instead of a scientific community and accademic bureaucracy to engage with, prioritisation of funding will increasingly depend upon the Whitehouse' (and its friends) patronage. Time to start sell ME/CFS as a disease exlusively of white, blond haired, stay at home moms.

Bit of background: https://www.wired.com/story/elon-musk-doge-recruiting-palantir/

https://www.bbc.co.uk/news/business-54348456

 

A key detail that is often missed, including by most news media, is that much of this is illegal. Many of those orders have no legal basis, Congress determines the budget and agencies can't be defunded, let alone 'destroyed', by executive order. There are also clear limits to what authorities can and can't do, things such as accessing private data and doing whatever with them.

Of course the problem here is that rules, including constitutions, are just words somewhere, in this case on an old piece of parchment. If no one stops them, then it may be illegal, but it's happening anyway. Because of the makeup of Congress, it's unlikely to object, even though it literally cedes constitutional authority in a move that is comparable to the enabling act, and the judiciary also won't act, because it's been thoroughly corrupted for this moment.

All of which means that it's only a couple of days, weeks at most, before the first American republic is effectively over, its constitution nullified. What this means for research at the NIH is anyone's guess, because nothing will be determined by what's written as a rule, it will be all exception.

 

A twitter thread - more general than the Research issue but it illustrates the direction of travel

https://twitter.com/user/status/1888235598516814000

The View of a Tech Insider

A you’ll want to read

Amid all this talk of DOGE and tech and data and access, I thought I’d check in with another friend of mine who does this work for a living to hear his thoughts on it all. And share with us what we need to know.
https://twitter.com/user/status/1888235601566072858

Here’s what he told me before answering my questions: “We're witnessing the first I.T.-driven restructuring of government in human history. While there's been some mockery of the young people Musk has employed…
https://twitter.com/user/status/1888235603692519664

they are extremely capable (albeit with little to no experience handling government systems). Having spent decades working at the intersection of digital infrastructure, automation, and organizational strategy, I recognize the profound implications of such a shift.
https://twitter.com/user/status/1888235605609390383

Musk has done two things -- he's grabbed the most influential digital megaphone in the world and plugged himself into the personal information of every American. 4/
https://twitter.com/user/status/1888235608469872793

This is a digital coup, embedding itself into the core I.T. infrastructure of federal agencies with little oversight and only selective “transparency.” While they claim the access is "read only," they're locking out career civil servants 5/
https://x.com/DavidPepper/status/1888235610399285592
and scraping personal data from millions of federal employees; the "GSAi" initiative (Musk’s new AI-driven analysis tool for government contracts) is bypassing security vetting and granting Musk’s inner circle deep visibility into federal procurement. 6/
https://x.com/DavidPepper/status/1888235612840292827
This isn’t just unauthorized access -- it’s a full-scale redirection of the government’s digital nervous system into the hands of an unelected billionaire. The existential risks here -- financial manipulation, mass data exploitation, and unchecked digital autocracy -- 7/
https://x.com/DavidPepper/status/1888235615235256322
are no longer hypothetical. We're watching a truly unprecedented transfer of governmental power to a private entity in real time.” Q: What are the risks of this for everyday Americans? A: “Well, what’s to stop them from aggregating and analyzing personal data, expanding… 8/
https://x.com/DavidPepper/status/1888235617495957742
to broader citizen records, tax data, social security information (which he’s made it clear he wants access to and may have already). So far all of this is being under the guise of first principles 9/
https://x.com/DavidPepper/status/1888235619366686886
- speech, assembly, religion -- but it grants one the power to engage in corporate exploitation or selective censorship on a whim. Disinformation campaigns could be hyper-targeted and used for commercial or political manipulation.” 10/
https://x.com/DavidPepper/status/1888235621438628236
Q: How does the existence of AI make what they’re doing worse? A: “AI systems are a black box. Their decision-making processes are opaque even to their designers. If it’s being deployed across federal systems, 11/
https://x.com/DavidPepper/status/1888235623657480662
one could start dictating key governmental functions without democratic checks with impunity — all in the name of “efficiency.” Even as I’m writing this it feels more like a Dan Brown novel than real life, but here we are.” 12/
https://x.com/DavidPepper/status/1888235625725198813
Q: What is the significance of “read only” access? Versus other access they might have? A: “They’ve been using “read-only” access as a way to say, “Nothing to see here! It’s just read-only!” But even without direct manipulation, 13/
https://x.com/DavidPepper/status/1888235627931414905
they can still conduct large-scale data scraping, pattern recognition, and predictive modeling. They’re analyzing and categorizing data at scale, which creates enormous leverage. Anyone in cyber security will tell you that “read only” doesn’t equate to “harmless.” 14/

- there a further 9 posts less focussed on the specifics - available at the top link

 

WCVB: 'Democrats plan to fight Trump's National Institutes of Health funding cuts in court'

'Massachusetts researchers could be severely hit by President Trump's massive cuts at NIH, but Sen. Ed Markey says his party plans to fight the change in court’

Boston Globe: 'Trump administration cuts to health research is ‘an attack on Massachusetts’

'Markey said the new rate won’t withstand a legal challenge because the law authorizing the payments prohibits the White House from making revisions without Congressional approval'

“What Trump is doing is illegal,” he said. “There is an explicit prohibition in the law prohibiting this administration or any administration from making changes.”

 

STAT: '22 states sue to block Trump administration cuts to NIH research payments'

'Attorneys general seek court order to halt 15% cap on research overhead costs’

States include: AZ, CA, CT, CO, DE, ME, HI, IL, MA, MI, MN, NJ, NY, NV, NM, NC, OR, RI, VT, WA, WI

(5 of the 22 states suing went red in ‘24: AZ, MI, NV, NC & WI)

 

STAT: 'Federal judge halts Trump administration cuts to NIH research payments in 22 states'

'Within hours, a federal judge in Boston, Angel Kelley, issued a temporary order halting the controversial policy within those 22 states.’

 

https://www.nytimes.com/2025/02/11/...e_code=1.wE4.jA-J.mCpEEEEyymsq&smid=url-share

The Pharmaceutical Industry Heads Into Musk’s Wood Chipper

 

So far the administration has ignored most of those judicial orders across multiple departments. The disruption will likely remain, as there is the slight pickle that enforcing those orders happens through the executive branch, and they will likely be told not to by the chief executive.

Constitutional crises are fun. Yay!

 

The Sick Times
Now Offline: Government Resources about Long COVID as a Disability

This is scary.

 

CBS News: Judge orders HHS, CDC and FDA to restore deleted webpages with health information

 

Thank you for sharing this. I'm glad to see that another court order against the barrage of anti-science executive orders. So far, reports are that the Trump administration is not complying with the court order against his freezing of grants and funding, but at least court orders are a start. Such a slow start, while we watch data get robbed. But a start.

 

Widen the Lens: The Dark Endgame of the NIH Cuts
“The Universities are The Enemy"
David Pepper
Feb 12, 2025

https://davidpepper.substack.com/p/widen-the-lens-the-dark-endgame-of?r=17y7a&triedRedirect=true

I know from my time in office here that one of every 12 jobs in the Cincinnati region is supported by the University. The campus is essentially a second downtown for our thriving city, driving a huge chunk of the region’s economy. So these $300 million in NIH funds are paying directly for a large number of good jobs in the area, while supporting far more ancillary jobs and businesses.

But I also know that federal funds sent to the University of Cincinnati are paying for research work that is saving and extending lives across the nation and the world. Just a few examples over the years:

• in 1990, UC “became one of the first four centers in the country to use gene therapy for the treatment of recurring brain tumors”
  
  
• in 2002, “a UC team received international attention when it identified two genes that convey a risk of heart failure 10 times greater than that faced by people who do not carry the gene. By far, the greater risk was in African-Americans”
  
  
• working with Cincinnati Children’s Hospital, UC was recognized by Physics World for one of the top 10 Breakthroughs of the Year for 2022—for discovering a cancer radiation treatment protocol (known as FAST-01) that reduces damage to surrounding tissue
  
  
• UC is currently “develop[ing] a new technique to visualize where genetically modified immune cells go in the body after being administered to patients with cancer”
  
  
• And of course, perhaps most famously of all, UC was where Albert Sabin developed the first oral polio vaccine, saving “untold millions around the world from paralytic polio and death.”
  

Now, in case you think I’m just bragging about Cincinnati—which I like to do—go back to that website and look at that map.

When I put my cursor over the Columbus area, I see even more NIH support—845 projects totaling over $432 million. Mostly Ohio State.

Cleveland area—754 projects, $413 million. Including Case Western Reserve and the Cleveland Clinic.

Again, all of these dollars mean jobs, businesses and stronger communities. And like Cincinnati, those dollars also mean lifesaving and life-extending research.

Now go back to the map and start looking at all the other states. Same story.

Billions in local economies. Jobs. Research. Communities, lifted nationwide. Lives saved, nationwide.

The Threat: Economic, Health and Community

Once you take that all in—all those jobs and breakthroughs—know that ALL OF IT is under threat from recent actions of the Trump administration.

To start, there’s the overall federal freeze in funds. And then there’s the Trump decision to slash billions from the NIH grant-making process (by specifically targeting indirect costs associated with NIH grants).

Why are these cuts so devastating?

As the lawsuit filed by 22 states to stop them points out: “they are real costs that the grant recipient must incur in order to carry out the research that the grant supports.”

For example, indirect costs include much of the back-office work that enables the research to take place, including support of “the facilities and infrastructure to conduct research and the personnel and offices that ensure the safety of human subjects and animals used in research, compliance with federal regulations, laboratory maintenance, and data storage and processing,” etc.

So if the Trump action takes effect, much of the work will simply stop. As soon as these cuts go into effect, they will trigger “large financial shortfalls immediately.” Across the nation, the costs “will ultimately hinder scientific progress and ultimately harm patients. It will impede progress on American medical, scientific, technical, and economic priorities; result in fewer jobs and slower economic growth; cede to other nations American companies’ competitive advantage as a catalyst of new industries; and threaten the nation’s long-term competitiveness against global adversaries.”

As one expert told me: the risk here to these and other cuts is “[t]he full destruction of the American science research system and the loss of the economic advantages that it brings, to China: [t]he US science research system (which is housed at US universities) and spawned Google and Intel and Silicon Valley, and which has caused the worldwide center of biomedical research to be located here.”

A researcher told Time the same thing: that the threatened cuts would be “the apocalypse of American science. This will basically change science as we know it in the U.S.”

For far more details on all this potential destruction, here’s a good article.

Fortunately, a district court temporarily stopped this cut from taking place in a ruling yesterday. Let’s hope that holds.

More at link
https://davidpepper.substack.com/p/widen-the-lens-the-dark-endgame-of?r=17y7a&triedRedirect=true

Link to the NIH Reporter website for funding by State https://reporter.nih.gov/

 

Does the rest of the world have any plans to step up biomedical research funding in response to this? (Looking especially at rich western countries ie. EU + EEA, UK, Canada, Australia etc)

 

NYT: 'Top NIH Official Abruptly Resigns as Trump Orders Deep Cuts'

Dr. Lawrence Tabak, the No. 2 official at NIH, did not give a reason for his departure

President Trump’s decision to slash billions of dollars in NIH grant funding has sparked a bitter court battle

'Dr. Tabak was not well-known to the public. But his decision to leave is surprising, and destabilizing for an agency that is on the political hot seat.'

 

The only country with the administrative responsiveness and the cash to quickly exploit the arising opportunities at scale is China - other countries have to go through Democratic processes to raise a fraction of what Trump/Musk are cutting. If Trump/Musk continue then EU and and non US anglophone countries may start by scooping up homeless researchers but money will take years to follow in large amounts, India and SE Asia may retain researchers who would otherwise have been drawn to the US - and that may generate more local funding but again there's not going to be rapidly arriving new money. The Gulf States might start building new research facilities faster as they seek to diversify from petroleum but those will take time to come on stream.

 

From what I can see, China does quite little basic biomedical research, they mostly focus on treatments (usually a mix between traditional herbal medicine and very cutting edge high trch stuff)

 

STAT: 'Young researchers mobilize to protest Trump administration’s science policies'

'D.C. demonstration and a later ‘Stand Up for Science’ event take shape'

'But resistance is starting to form. Unions representing fellows at the NIH and several universities are planning a protest at the headquarters of the Department of Health and Human Services next week.'

“Things are changing very quickly and in a terrible direction. It seems like every week we have new slashes to funding or new changes to policies that harm science in America,” said Ian Fucci, a member of the NIH Fellows United union who is involved in planning the rally at HHS next week. “We have strength in numbers. …I think we’re ready to fight."

"The protest outside HHS is a direct response to the chaos the new administration has unleashed at federal science and health agencies.."