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

Today I learned that I still have antibodies for both measles and polio. I had the blood test last week, and the lab tech told me that lots of people have been getting tested to see if their childhood vaccines for measles have held. Whew! I live in Texas, where there have been 422 cases of measles since late January 2025.

Through an oversight, one of my BILs didn't get the measles vaccine when he was little although all the other siblings did. He got measles a couple of years ago and was extremely sick for 2 weeks. This BIL had no problem or loss of income from not being able to work during this time. Many people wouldn't be as fortunate.

I wish more people understood how serious measles can be and how highly contagious it is. I also wish there were public service announcements to inform the public about the danger of letting measles run rampant and the possibility that it could become an epidemic after having been declared eradicated in the U.S. by the WHO in 2000. But PSAs like this would come under the umbrella of public health, a notion that is on life support in the U.S.
 
October, 2024 to March, 2025, Ontario has reported a total of 572 measles.

The number of cases reported in Ontario over the last week is more than the number of cases recorded over the course of a decade between 2013 and 2023.:jawdrop: Mostly unvaccinated children.
 
Assuming the current administration does not defy the court order, it looks like some of the health funding cuts are delayed, for now.

Federal judge says she will temporarily block billions in health funding cuts to states
AP News said:
A federal judge will temporarily block President Donald Trump’s administration from cutting billions in federal dollars that support COVID-19 initiatives and public health projects throughout the country.

U.S. District Judge Mary McElroy, appointed by Trump in 2019 but first nominated by former President Barack Obama, in Rhode Island said Thursday that she plans to grant the court order sought by 23 states and the District of Columbia.

“They make a case, a strong case, for the fact that they will succeed on the merits, so I’m going to grant the temporary restraining order,” said McElroy, who plans to issue a written ruling later.

New York Attorney General Letitia James tweeted about the judge’s decision immediately after the hearing, saying: “We’re going to continue our lawsuit and fight to ensure states can provide the medical services Americans need.”
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Another update on funding cuts for Columbia University. I know this was posted on another thread but I think it fits here:

Trump administration’s attack on university research accelerates
ArsTechnica said:
Shortly after its inauguration, the Trump administration has made no secret that it isn't especially interested in funding research. Before January's end, major science agencies had instituted pauses on research funding, and grant funding has not been restored to previous levels since. Many individual grants have been targeted on ideological grounds, and agencies like the National Science Foundation are expected to see significant cuts. Since then, individual universities have been targeted, starting with an ongoing fight with Columbia University over $400 million in research funding.

This week, however, it appears that the targeting of university research has entered overdrive, with multiple announcements of funding freezes targeting several universities. Should these last for any considerable amount of time, they will likely cripple research at the targeted universities.

On Wednesday, Science learned that the National Institutes of Health has frozen all of its research funding to Columbia, despite the university agreeing to steps previously demanded by the administration and the resignation of its acting president. In 2024, Columbia had received nearly $700 million in grants from the NIH, with the money largely going to the university's prestigious medical and public health schools.

But the attack goes well beyond a single university. On Tuesday, the Trump administration announced a hold on all research funding to Northwestern University (nearly $800 million) and Cornell University ($1 billion). These involved money granted by multiple government agencies, including a significant amount from the Department of Defense in Cornell's case. Ostensibly, all of these actions were taken because of the university administrators' approach to protests about the conflict in Gaza, which the administration has characterized as allowing antisemitism.
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I guess capitulating to the administration did not work out so well for Columbia.

Resisting is generally a better strategy. Another university that was threatened with cuts (I can't remember the name) filed a bunch of lawsuits and the administration backed off.
 
ahimsa said:
I guess capitulating to the administration did not work out so well for Columbia.

Resisting is generally a better strategy. Another university that was threatened with cuts (I can't remember the name) filed a bunch of lawsuits and the administration backed off.
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Harvard Professors Sue Trump Administration Over Threat to Cut Funding

The administration is reviewing about $9 billion in federal funding that the university receives.

"Two groups representing Harvard professors sued the Trump administration on Friday, saying that its threat to cut billions in federal funding for the university violates free speech and other First Amendment rights.

The lawsuit by the American Association of University Professors and the Harvard faculty chapter of the group follows the Trump administration’s announcement earlier this month that it was reviewing about $9 billion in federal funding that Harvard receives. The administration also sent the school a list of demands that it must meet if it wants to keep the funds." ................

..................... "In a statement, Andrew Manuel Crespo, a law professor at Harvard and general counsel of the AAUP-Harvard Faculty Chapter, said the administration’s policies are a pretext to chill universities and their faculties from engaging in speech, teaching and research that don’t align with President Trump’s views."

Full article https://www.nytimes.com/2025/04/12/us/politics/harvard-professors-trump-lawsuit-funding.html
 
Although the new administation has a fairly opaque philosophical reference point, the scale of philosophical change can't be ignored and for any advocy group, how the locci of influence in the US has altered with that philisophical redirection has to be responded to if advocacy for ME/CFS & LC in the US is to have any effect at all. The following article may be seen as too political for this forum but without understanding the sheer scale of attitudinal change, discussion about the day to day tactics of ME/CFS & LC advocacy will quickly lose relevance:

The Atlantic

Trump Has Found His Class Enemy
By Franklin Foer

https://www.theatlantic.com/ideas/a...t=hVZeG3M9DnxL4CekrWGK3-h3gdyrK22tbt8Qkwl4sX4

"Even the educated mind, or perhaps especially the educated mind, is skilled at deflecting harsh realities. That’s why so many white-shoe lawyers have failed to publicly support their colleagues in firms that President Donald Trump has targeted. It’s why universities have barely fought him in court, even as he has butchered their funding.

Law partners and university presidents like to talk their way out of problems, and they apparently believe that they can ultimately evade the fate that befalls those who resist Trump. They assume that he merely craves gestures of submission—and that once obeisance has been paid, he will move on to his next target.

That, however, underestimates the social revolution that the Trump administration is trying to unleash. Its goal isn’t just to shatter a few institutions. It intends to crush the power and authority of whole professions, to severely weaken, if not purge, a social class.

The target of the administration’s campaign is a stratum of society that’s sometimes called the professional managerial class, or the PMC, although there’s not one universal moniker that MAGA applies to the group it is now crushing. That group includes society’s knowledge workers, its cognitive elite, the winners of the tournament that is the American meritocracy.

It covers not only lawyers, university administrators, and professors, but also consultants, investment bankers, scientists, journalists, and other white-collar workers who have prospered in the information age. Back in the 1990s, as the group began to emerge in its current form, the liberal economics commentator Robert Reich hailed its members as “symbolic analysts”—people who identify and solve problems by thinking through ideas rather than via physical labor.

A decade later, the urbanist Richard Florida put forth an even more triumphalist term: the “creative class.” That is, its members had the academic training to master the complexities of a globalized economy, the intellectual skills to conquer the digital world."

More at above link, or if paywalled try going through: https://bsky.app/profile/anneapplebaum.bsky.social/post/3lmp5qdands22
 
It's funny (not haha funny) how many of the people who made strong arguments for academic freedom are completely silent about this. Many of our psychobehavioral overlords, and those who have minimized the COVID pandemic at every turn, have channeled it as the reason why 'fringe' ideas need to be defended no matter what.

But here, total silence. Funny how that works. Almost like they exclusively considered it their right to be free of criticism, and that it was never about some vague notion of academic freedom all along.

Of course they were always transparent about it, how they never granted that academic freedom to people working the opposite angle they espoused, but their total silence here is really something.
 
rvallee said:
It's funny (not haha funny) how many of the people who made strong arguments for academic freedom are completely silent about this. Many of our psychobehavioral overlords, and those who have minimized the COVID pandemic at every turn, have channeled it as the reason why 'fringe' ideas need to be defended no matter what.

But here, total silence. Funny how that works. Almost like they exclusively considered it their right to be free of criticism, and that it was never about some vague notion of academic freedom all along.

Of course they were always transparent about it, how they never granted that academic freedom to people working the opposite angle they espoused, but their total silence here is really something.
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Yeah where are the self-appointed martyrs “defending science” from “activists”/“militants” now?

Almost like “defending science” is supposed to mean “defending the interests of the powerful” when used by them.
 
dave30th said:
I haven't heard yet about the other NIH-funded ME/CFS centers,
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Cornell got $1000MM pulled, NorthWestern $800MM and now Harvard, all on top of Columbia. CDMRP PRMRP totally gone which was funding Stanford, INIM, and a few other ME/CFS centers. Very depressing. I wrote to my congressman about the CDMRP Peer review medical research program disappearing and I just got a boiler plate letter talking about the affects of cuts on NIH.
2 NIH ME/CFS centers and another four that have ME/CFS teams affected. Uggh.
 
wigglethemouse said:
Cornell got $1000MM pulled, NorthWestern $800MM and now Harvard, all on top of Columbia. CDMRP PRMRP totally gone which was funding Stanford, INIM, and a few other ME/CFS centers. Very depressing. I wrote to my congressman about the CDMRP Peer review medical research program disappearing and I just got a boiler plate letter talking about the affects of cuts on NIH.
2 NIH ME/CFS centers and another four that have ME/CFS teams affected. Uggh.
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Northwestern's still completely in the dark, we've (the grad students, at least) had no update since the news broke. We have a long COVID clinic as well though I'm not sure how it's funded
 
The Sick Times

Secretary Kennedy promises to support Long COVID treatment research in Senate hearing, says son is “dramatically affected”
Long COVID was at the top of legislators’ priority list during today’s Senate Health, Education, Labor, and Pensions (HELP) Committee hearing with Health Secretary Robert F. Kennedy Jr. Senator Bill Cassidy (R-L.A.), who chairs the HELP Committee, asked about federal health agencies’ commitment to addressing Long COVID in his first question to the Secretary.

In his question, Cassidy noted the need to treat previously ignored infection-associated chronic illnesses like myalgic encephalomyelitis (ME) in tandem with Long COVID. He also mentioned the Department of Health and Human Services’ decision to close the Office of Long COVID Research and Practice.

Cassidy asked, “To what extent will HHS continue to support research, data collection, and other programs dedicated to understanding the health impacts of Long COVID?”

Kennedy told the HELP Committee, “I am 100% committed to finding treatments for Long COVID. I’m deeply involved in that, personally. I have a son who is really dramatically affected by Long COVID. I have many friends that are affected by that, and by Lyme disease, incidentally, which is also a priority.”

He stated that the Office of Long COVID was cut by an executive order from the White House. “But everyone at the NIH and CDC is committed to these kinds of studies. And I can tell you, personally, I will make sure that they happen,” he said.
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https://thesicktimes.org/2025/05/14...te-hearing-says-son-is-dramatically-affected/
 
I often joked about this, though usually with financial classes as the answer to poverty, and how it's the same ridiculous set of ideas they cooked up for us. The future of medicine, folks, in all its biopsychosocial beauty. The bigger kicker? The dude who said this is an actual physician. Also, sells a book promising just that. I'm sure that's a total coincidence.


RFK Jr.’s FDA Head Wants Diabetics to Get Cooking Classes Over Insulin
https://www.yahoo.com/news/rfk-jr-fda-head-wants-180046638.html

“Maybe we need to treat more diabetes with cooking classes, not just throwing insulin at people,” FDA Commissioner Marty Makary said on Fox News’ Sunday Futures. “You know, scientists have been waving the flag for years, saying you’ve got to look at this body of scientific data, and the modern medical establishment really has been disconnected.”
 
'Not a real paper': Scientists say MAHA report cites nonexistent sources
Secretary Robert F. Kennedy Jr.’s “Make America Healthy Again” Commission report is filled with errors and broken links, reports NOTUS. The paper, released under the administration of President Donald Trump, also cites seven sources that do not appear to exist.

NOTUS spoke to Epidemiologist Katherine Keyes, the MAHA report lists as the first author of a study on adolescent anxiety. Only Keyes claims she didn’t write the paper the report uses.

“The paper cited is not a real paper that I or my colleagues were involved with,” Keyes told NOTUS via email. “We’ve certainly done research on this topic, but did not publish a paper in JAMA Pediatrics on this topic with that co-author group, or with that title.”
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Similarly, NOTUS reports two other studies pertaining to direct-to-consumer drug advertisements for ADHD medications and antidepressants for kids appears nowhere “to be found.”
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In another section titled, “American Children are on Too Much Medicine – A Recent and Emerging Crisis,” the report claims 25% to 40% of mild cases of asthma are overprescribed. But searching Google for the exact title of the paper that section cites to buttress that figure — “Overprescribing of oral corticosteroids for children with asthma” — leads to only one result: the MAHA report itself.
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'Not a real paper': Scientists say MAHA report cites nonexistent sources
 
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