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

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.’

 

Interesting. From Scientific American, 2016:

 

A week of pain and confusion for medical researchers

https://wapo.st/4aEKtOU

 

https://twitter.com/user/status/1884669194878517556


https://twitter.com/user/status/1884669360326815924

 

Transcript of RFK & Sen. Young

(fixed a few errors so my second attempt)

 

Not sure if that 16 million Americans is the correct number for actual people the current administrations considers Americans, once everyone else has been deported...?

 

Thanks!

I’ll believe RFK’s words when I see them!

 

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.

 

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....

 

PBS: 'RFK Jr. commits to prioritizing funding for long COVID research'

“Absolutely, senator, with enthusiasm,” Kennedy said in his hearing Wednesday before the Senate Committee on Finance

 

That’s probably one of the better scenarios with RFK.

My bet is that it’s either all word no action, or he’ll use long COVID as a way to advance his anti-vaccine and broadly “pro”-covid interests with little care about the people actually affected.

 

Forbes: 'Live Updates: Robert F. Kennedy, Jr. Responds On Vaccines, Abortion, Long Covid And More'

'Senator Young (R-IN) criticized NIH research efforts towards finding treatments for long Covid. He asked Kennedy if he’s confirmed, if he would work to accelerate development of treatments for long Covid and prioritize research dollars to developing clinical trials for treatments and diagnostics. Kennedy replied he would do so.'

 

Sharing for sight from Sen. Young

https://twitter.com/user/status/1884731744655429690


“Good conversation with @RobertKennedyJr today on a number of topics – restoring trust in public health institutions, encouraging innovation to lower health care costs, and improving research on Long Covid.”