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

Science: 'How much power do Trump and Kennedy have to reshape health agencies?'

'Georgetown's Lawrence Gostin weighs in on what the new administration can—and can’t—do to at FDA, CDC, and NIH'

'There will be a large, continued erosion of public trust..'

 

RFK Jr. Is Crowdsourcing Cabinet Picks for Trump

Just days after former President Donald Trump won the presidential election, his onetime-opponent turned supporter, the anti-vaccine superstar Robert F. Kennedy Jr., has set up a website to solicit suggestions for key Cabinet roles. Anyone can submit a name and vote for their favorite nominees across 12 areas of government, including health, food and agriculture, education, technology, and more.
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https://www.motherjones.com/politic...-jr-is-crowdsourcing-cabinet-picks-for-trump/


Looks like we can nominate people and vote for them in the health department. https://nominees.mahanow.org/c/health/7

 

I have to say that from my perspective from within one particular specialty looking out on others the NIH seems to have been impressively underachieving over the last 20 years. Add to that the fact that NIH supported approaches may well have been the cause of Covid-19 in the first place, or at least shoddy enough lab practices for that to have been very possible, and it is hard to deny that a shake up might be a good idea. And the profile on ME/CFS has hasn't even managed to reach underwhelming.

 

RFK Jr. said he wants to "Make America Healthy Again by ending the chronic disease epidemic."

I like how that sounds but good intentions aren't enough. He seems motivated, but you also need competence and he comes across as lacking critical thinking. Maybe he will be able to do some useful things, but the chance of causing disaster seems high.

Maybe he will have sympathy for ME/CFS due to its marginalized status?

High population rates of Long Covid might force change and recognition of ME/CFS indepedently of who is in charge of things. It's about the economy after all.

 

A possible Long COVID ally who is an outspoken RFK supporter (meaning she would be likely to pass vetting process) to nominate for a cabinet position could be Dana Parish.

 

I understand the frustration with the NIH. However taking an axe to it may not be beneficial.

Reminder that RFK's former profession was that of lawyer.

Not a scientist, not an MD. Although he has media prescence, his bona fides in the medical community here are close to zero.

Columbia University virologist and polio researcher Vincent Rancaniello and Infectious Disease doc Daniel Griffin expressed their deep dismay at the end of science in medicine and the rise of vaccine-preventable diseases should RFK be appointed as head of the CDC or the NIH per the 11/08/2024 Clinical Update podcast (Twiv, microbe TV).

 

I have not been able to engage in any discussions about anything since Tuesday. I am slowly emerging from a catatonic state.

 

Let us hope we won't also have to contend with human-to-human transmission of bird flu in these coming years. It wouldn't be a good time to have someone lacking medical, scientific, or public-health credentials in charge.

 

Lots of countries had people like that in charge. Technically speaking.

Made zero difference, in the end they all followed the same eugenics la-la-land. Everything depended on chance, on the dynamics of transmission, geography and so on. If we get a pandemic similar to COVID but with a true kill rate of 30%, that's likely how many people die, or close to it. We just barely have any impact on the outcome.

And the next pandemic would be just as bad if only technocrats with MDs and PhDs made all the decisions. The flaw is in humanity.

 

Continued is the key point. It's just going about the same with slightly different means. All style, no substance.

Damn I realize I'm a bundle of joy these days but it's just really bleak out there. Outlook entirely depends on one's circumstances. Lots of people will live happily through all this. It's just not the same when you're on the wrong side of that divide.

 

Some of what I read I think explicitly said that he doesn't see any importance for infectious diseases here. To him it's all environmental and lifestyle causes. I may be wrong, but I saw something a while ago where he explicitly said that. We're more likely to see advice for exercise and raw milk than scientific research into real causes.

Then again, the main difference here is the raw milk.

 

Politico: '‘We know what is coming’: Federal bureaucrats wrestle with fight-or-flight response to Trump election'

'Key agencies are bracing for a wave of departures in the coming months, amid rising fears among civil servants that they and their work will be targets of the Trump White House'

'Still, one current staffer at the National Institutes of Health said concerns are building inside the research agency about the future of vaccine research in the next administration.

NIH Director Monica Bertagnolli seemed to hint at those fears in an email sent to agency staff Wednesday that was shared with POLITICO.'

'What is very clear is that in 2016, Trump was completely unprepared, and now he has a plan, and public health is right smack in the middle of it,” the person said.'

 

ABC News: 'RFK Jr. suggests he'll gut NIH, replace 600 employees'

'Robert F. Kennedy Jr. indicated over the weekend that he would fire 600 employees at the National Institutes of Health, replacing them with a new cohort of workers as he seeks to dramatically reshape America's health agencies'

'Speaking at the Genius Network Annual Event in Scottsdale, Arizona, Kennedy described his role vetting people for Donald Trump's new administration'

"We need to act fast, and we want to have those people in place on Jan. 20, so that on Jan. 21, 600 people are going to walk into offices at NIH and 600 people are going to leave," Kennedy said, according to a video of his remarks posted on YouTube'

 

HuffPost: 'Experts Share What Another Trump Presidency Could Mean For Your Health'

'″[What] concerns me most, actually, is this talk about splitting the CDC in two: one part to work on infectious disease and one part to work on chronic disease,” said Gorman.'

“It actually makes no scientific sense to split those things up,” she said. “But I think more importantly, what doing something like that would do would be to weaken the [CDC] as kind of an all-encompassing public health institution, and that, to me, is one of the most concerning things that I’ve heard so far.”

 

Just thought what's said at the end of the article is important in these times, too:

 

As horribly grim as those news are, 600 out of 18,718 is not that much, it will depend on where they will be positioned and who the people leaving are. I am more worried by the quote "that half of NIH's research budget should be spent on "preventative, alternative and holistic" medicines.", where a sure focus will be on holistic and bogus non-sense that can be sold at a profitable price. I'm sure "wellness influencers" on Twitter, Instagram, Youtube and the like whose pockets are ever-growing could not be more satisfied. What will it be: supplement x in your smoothie, raw beef liver for breakfast, aged urin for dinner or butthole sunning to triple boost your vitamin D during lunch?

 

Given there seems to be a societal and medical bias towards ailments that affect “healthy” people. As opposed to lifelong disabling ones, perhaps having an institution focusing on “chronic disease” isn’t the worst idea.
Though RFK is one of the last people I’d choose to create it and run it.