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

J

Jaybee00

Senior Member (Voting Rights)
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Please note the title of the thread and keep on-topic. Restrict your posting to information that is highly relevant to 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
 
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Trump’s queasy prescription to ‘make America healthy again’ takes shape
“My first reaction is that a Trump administration would be the most anti-public health, anti-science administration in history,” said Lawrence Gostin, a global health law professor at Georgetown Law School.

“In my mind, health is very much on the ballot,” he said.

Over the last week of the campaign, Trump said he would let the nation’s foremost vaccine skeptic “go wild” at the nation’s food and drug agencies and refused to rule out banning certain vaccines. The Republican House speaker, Mike Johnson, also promised “massive reform” of Obamacare should Trump win.

Vaccines are among society’s most effective public health interventions, saving an estimated 154 million lives worldwide over 50 years, according to a study in the Lancet. Obamacare has grown in popularity even among Republicans.
“It reminds me of the chaos of the first administration, right in the midst of the pandemic,” said Gostin, referring to a time when Trump floated bogus treatments for Covid from injecting disinfectant to ivermectin to hydroxychloroquine – all debunked and often actively harmful.

“But it’s far worse,” continued Gostin, “because while Trump at least was surrounded by credible scientists like Tony Fauci, I don’t think there will be any similar restraint in the next Trump administration.”
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Trump’s queasy prescription to ‘make America healthy again’ takes shape

(article written before the election results).
 
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.
 
We have changed the title of the thread to allow posting on the impact of the change of government on ME/CFS and Long Covid.

We shall be monitoring the thread closely, to ensure posting is strictly on-topic and within our rules. In particular, please check your posting is compliant with the relevant part of Rule 11:
Politics may be discussed strictly in the context of ME/CFS, but must still avoid any generalizations about members or supporters of political parties.
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Don't want to be that guy, but there is no way to sugar coat this situation.

RFK Jr. has some, er, interesting views on health, and even if somebody else gets the job it is a fairly safe bet that the incoming US admin will not be giving much weight to scientific reality and patient welfare in their health policy. Indeed, it is quite possible that the NIH and CDC and FDA will no longer exist within a year or two in any recognisable or functional form.

We could easily have most of our hard earned gains wiped out in a heartbeat. Either by simply defunding of research and being completely abandoned, or being handed straight back to the psychosomatic club for another kicking.

We should certainly keep pushing our case, and we might get lucky. But more likely we won't. We are just too easy and convenient a target, for a variety of reasons, and still have some powerful enemies inside the US medical establishment. So best to prepare for the worst.

It won't be just us. The huge gains in public health and medical science generally over the last couple of hundred years are in serious danger in the USA. As is their entire health system.

Sorry, but this stuff has to be said.

Stock up on medications, get up to date with vaccinations, etc. They may not be available for much longer.
 
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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.
 
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Yann04 said:
RFK made a campaign promise that “not a single cent of public money will be wasted on infectious disease research”.
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At a time in human history where infectious diseases have their greatest opportunity ever to emerge and spread globally.

He helped convince Samoans and Tongans not to vaccinate against measles. Result: 83 people dead in Samoa, and more than 70 in Tonga, in less than a year, from one of the most preventable infectious diseases on the books, and more than half were children. These island nations do not have large populations to start with, around 300 000 collectively, so those numbers are proportionally very high. Fortunately they both quickly wised up and got vaccinated. But that doesn't bring back the dead.

He, of course, denies any responsibility for it.

There are few I have more contempt for in this world than this man. For him to be given "near total control" of the entire health system, in the leading medical scientific nation, is almost beyond comprehension.

But here we are. :banghead:

I will not be surprised if tries to literally destroy the accumulated technical records and data as well.

Yann04 said:
the whole (mostly) evidence-based scientific-medical establishment will be taken down,
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And once dismantled that sort of accumulated deep expertise and institutional memory and material technical facilities cannot be rebuilt quickly. It will take decades to even get back to where we are now, let alone start advancing beyond that.

Yann04 said:
I really can’t understate how far reaching the negative consequences of this election is for us.
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Yep. This is going to be a health and welfare catastrophe.
 
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Mij said:
Make America Healthy Again by ending the chronic disease epidemic.
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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)
 
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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.”
 
Dakota15 said:
"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.”
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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
 
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