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

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Not good.

https://wapo.st/3UEZWaZ
Florida surgeon general who warned against vaccines may lead HHS under Trump
or
Could RFK Jr. Really Become HHS Secretary?
https://www.medpagetoday.com/special-reports/exclusives/112639

Researchers ‘in a state of panic’ after Robert F. Kennedy Jr. says Trump will hand him health agencies


https://www.science.org/content/art...-f-kennedy-jr-says-trump-will-hand-him-health

 

Trump’s queasy prescription to ‘make America healthy again’ takes shape

Trump’s queasy prescription to ‘make America healthy again’ takes shape

(article written before the election results).

 

As a Canadian, I feel like a nervous neighbour watching a house fire from across the street.

 

It can be safely assumed that everything LC at HHS will be scrapped next year. Zero chance of any more funding for research, unless the NIH decide to allocate money on their own, which is extremely unlikely. Can't be assumed that there won't be leadership change there and pressure on the NIH to end a lof what they have going on early.

The odds got from bad to basically zero. It was always mostly chance. Basically worst-case scenario for us, but it probably takes the odds down to 0 from 1-2%. Most first-step discoveries in science are pure chance anyway. They can do the rest, it's the first step they can't manage. It's become very clear that they don't have the motivation for it anyway, so maybe it doesn't change all that much, it just makes it clear that help is not coming any time soon.

 

It feels like a cruel irony that NIH begins some meetings on disability research tomorrow https://dpcpsi.nih.gov/disabilityresearch/events

 

Robert F. Kennedy Jr., Foe of Drug Makers and Regulators, Is Poised to Wield New Power
President-elect Donald Trump has encouraged him to “go wild on health” but has not made clear what role Mr. Kennedy will play.

https://www.nytimes.com/2024/11/06/...e_code=1.YE4.f9eB.mLIIt90Nrexr&smid=url-share

 

Warning, the following is possibly negative, but I think it’s fully backed by the facts:

I don’t have the exact numbers, but with 1.65 billion invested in Long COVID (most of which has been used up) the US government must have contributed over 50% possibly over 80% of all research funds ever invested into Long COVID.

The NIH was finally starting to be more reasonable with the money they had left. They started toning down their behavioural hypothesis, taking input from post-viral experts, and seriously including patients in the planning process. There was political will, among the governing party to pass some sort of guarantee for the next decade for Long COVID funding. (Likely, the moonshot wouldn’t have passed as is, but a watered down version would have).

Now the US population has elected a complete trifecta (looks like house is near certainly going GOP although results are yet to be confirmed), to a party which has significant portions believing various covid denialist and anti-vaccine conspiracy theories.

Trump has promised RFK near total control over Health agencies. RFK made a campaign promise that “not a single cent of public money will be wasted on infectious disease research”. This likely includes anything with COVID in the name.

RFK is a notorious alternative medicine promoter, who believes medicine has been too “pharmaceuticalised” and “medicalised”, he tweeted saying he will stop the FDA’s “suppressive measures” against “sunshine, exercise, and raw milk” (among other things).

Not only does it look like there will be no further long COVID funding in the next 4 years by the US government, but the whole (mostly) evidence-based scientific-medical establishment will be taken down, leading to an accelerated era of post-truth medicine (not that medicine doesn’t currently have issues, as we are all too familiar with).

Long COVID is a field in it’s infancy. It’s only existed for four years, and had substantial funding for three, a lot of researchers were starting to slowly interest themselves in it, perhaps even specialise in it. Now that the majority of funding is cut, these researchers, instead of consolidating their role as specialised in Long COVID, will instead look for something else with funding opportunities.

In a sense, the same fate that happened to ME risks happening to long COVID, a severe lack of career researchers and institutional recognition, in an education, research, and public health sense, risks turning Long COVID into the same sort of unofficial, neglected, and only-semi-institutionalised alternative-illness status that ME has had for the majority of it’s history.

Unless private donations or other countries massively step up, I really can’t understate how far reaching the negative consequences of this election is for us.

For the first time we had a post-viral illness with a foot in the door, we were nearly there on the way to becoming a recognised and fairly funded illness, and this election has led that door to shut in the United States, the largest health funder on earth.

 

https://twitter.com/user/status/1854281809464529384


President Trump has asked me to do three things: 1. Clean up the corruption in our government health agencies. 2. Return those agencies to their rich tradition of gold-standard, evidence-based science. 3. Make America Healthy Again by ending the chronic disease epidemic.

 

The chronic disease stuff sounds promising until you realise he thinks most diseases are caused by environmental factors such as bad food and not enough exercise and random chemicals.

(Don’t get me wrong some of them are but this generalisation would be very harmful to ME/LC patients)

 

Dear
@RobertKennedyJr
Congratulations on your recent elections success. Since you have been declaring a radical change in the American healthcare system, I am keen to hear your thoughts on reforming the research landscape of post-viral chronic illnesses, which is one of the most significant current requirements. Will you open up the NIH funds to researchers from outside of the USA who might be able to contribute to your country's healthcare reform?
https://twitter.com/user/status/1854486383743603014

 

Science: 'Trump won. Is NIH in for a major shake-up?'

“We’re definitely worried,” said one biomedical research advocate..'

'The agency’s relationship with Congress has frayed in the past few years, in part because of clashes over the COVID-19…’

"Onlookers do expect a change in NIH leadership. Current Director Monica Bertagnolli, a cancer researcher, will be expected, like many other presidential appointees, to submit a resignation letter to the president in late January when Trump takes office.”

"In the Senate, Senator Bill Cassidy (LA), the senior Republican on the Committee on Health, Education, Labor and Pensions (HELP), released his own white paper on NIH reform earlier this year.”

"With the Senate shifting to Republican control next year as a result of the elections, Cassidy could become HELP’s chair, and he has said NIH reform will be a priority for him.”

 

That’s a shame, it seemed like advocacy was starting to influence her, and that long COVID was atleast “on her radar”.

 

Found a very interesting quote from someone’s book description:

““Neenyah Ostrom's reporting on the Chronic Fatigue Syndrome epidemic from 1988-1997 is getting increased attention thanks to Robert F. Kennedy Jr. He discusses her work extensively in his best seller, The Real Anthony Fauci”

I somehow can’t share an amazon link without a popup so here it is without the “https” that will need to be added for it to work

://www.amazon.com/AMERICAS-BIGGEST-COVER-UP-Everyone-Syndrome/dp/B09TTV4TKH

 

A quote from RFK’s anti-fauci Book

 

What does Kennedy say about Ostrom's work I wonder?
The blurb for Ostrom's book indicates that it is misleading pseudoscience - very nasty stuff indeed in fact.

Edit: judging by the quote he likes it?

 

I am amazed that the Ostrom book came out in 2022, when all the CFIDS stuff had largely died down.