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

Science: Trump hits NIH with ‘devastating’ freezes on meetings, travel, communications, and hiring

the new administration imposing a wide range of restrictions, including the abrupt cancellation of meetings such as grant review panels. Officials have also ordered a communications pause, a freeze on hiring, and an indefinite ban on travel.
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Another consequence of the communications pause, according to an NIH staffer involved with clinical trials at NIH's Clinical Center, is that agency staff cannot meet with patient groups or release newsletters or other information to recruit patients into trials. Another unknown is whether NIH researchers will still be allowed to submit papers to peer-reviewed journals.
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NIH’s Office of Human Resources had rescinded existing job offers to anyone whose start date was slated for 8 February or later. It also pulled down currently posted job vacancies on USA Jobs. “Please note, these tasks had to be completed in under 90 minutes and we were unable to notify you in advance,” the 21 January email noted, asking NIH’s institutes and centers to pull down any job vacancies remaining on their own websites.
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FDA purges material on clinical trial diversity from its site, showing stakes of Trump DEI ban
The scrubbing could affect the ways researchers and companies test drugs and medical devices

https://www.statnews.com/2025/01/23/fda-purges-pages-clinical-trial-diversity-after-trump-dei-ban/

https://www.reuters.com/business/he...mproving-clinical-trial-diversity-2025-01-24/

TPM comments: "I think most people know this: but this isn’t a matter of symbolic diversity. Many medications and/or diseases or conditions present differently in men and women and in people with different genetic backgrounds."
 
Vox: 'Researchers are terrified of Trump’s freeze on science. The rest of us should be, too'

'Jaime Seltzer, the scientific director at MEAction, a nonprofit serving people with infection-associated chronic illness, told me that despite working outside of academia, she’s worried that if she loses access to crucial NIH-affiliated staff and data repositories, their work on long Covid and chronic fatigue syndrome will be put on hold.’
 
This is not good.

But my bigger concern is if the current US admin tries to permanently destroy research records and data. That really will be an unrecoverable situation. It is the difference between hitting pause on research, and having to rebuild research programs from scratch. Data in particular usually cannot be rebuilt.

In case anybody thinks this is just a hypothetical fear, or couldn't happen in a modern democracy, this is exactly what happened in Canada a few years back under the Harper government with some science data. They deliberately destroyed it because it was inconvenient to their policy agenda.
 
Sean said:
In case anybody thinks this is just a hypothetical fear, or couldn't happen in a modern democracy, this is exactly what happened in Canada a few years back under the Harper government with some science data. They deliberately destroyed it because it was inconvenient to their policy agenda.
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Interesting. From Scientific American, 2016:
Four years ago hundreds of Canadian scientists gathered on Parliament Hill in Ottawa, donning their white lab coats to protest. [...] Conservative Prime Minister Stephen Harper, they warned, appeared to be waging a war on science—imposing draconian restrictions on scientists’ engagement with the media and proposing a national science budget that slashed research funding and closed certain research centers.

Some of those actions took Canadian scientists by surprise, and a number of them are warning their U.S. counterparts not to be similarly caught off guard following Donald Trump’s election victory in November. Several are offering to help U.S. scientists back up their data, and urging them to make their case to the public about the importance of their research—and of factual evidence itself.
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Tarasick says Harper’s government prevented him from speaking to the media about compelling research titled “Unprecedented Arctic Ozone Loss in 2011” for two weeks after the report was published in Nature. His agency simply denied interview requests without stating any reason, he says. Instead, that media office supplied “approved” statements to attribute to Tarasick, but he says he had never seen or approved that language himself.
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Following a recent skirmish over a Trump transition team request for the names of Department of Energy staffers who worked on climate change initiatives under Pres. Barack Obama, Canadian scientists are working with colleagues at the University of Pennsylvania library and a nonprofit called the Internet Archive to back up environmental data sets and materials—including research around air pollution and greenhouse gases—that they believe could be vulnerable under a Trump administration. “The Harper government closed many of the different science libraries in Canada,” Duck says. “It was done in a very chaotic fashion and we have almost certainly lost data that we used to have.”
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Americans could also look for a potential example in Canadian scientists’ recent actions to enshrine their ability to speak to the media, included as part of their recently negotiated contracts with the current government, Duck says.
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It's nice that RFK Jr was able to answer these questions and in a manner that I approve of, but for me that does not detract from the many things he did NOT answer or answered incorrectly.
He said, for instance, that kids under 6 are not at risk for COVID. Uhhhhh... That's not the same as saying their risk is LESS than adults. They are at risk though...

ETA he could also not say if healthcare is a human right....
 
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Yann04 said:
Thanks!

I’ll believe RFK’s words when I see them!
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Mij said:
Question, does RFK believe the Covid virus caused LC, or does he believe the vaccine caused their disability?

I'm still confused about where he stands on this issue.
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Trish said:
Let's hope that doesn't turn out to be Walitt leading a bunch of quacks.
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Yep, the devil is in the detail.

The best predictor of someone's future behaviour is their past behaviour, and his track record is,... not encouraging.
 
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