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

EndME said:
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?
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They even have perfect blueprints to make this all appear legitimate. Just call it biopsychosocial, use only 'evidence-based' methods, flood the space. It's super cheap. Easily 'replicated'. The only possible saving grace is if they're too incompetent to do this. But it's right there for them to grab.

They can even start recommending things like raw milk to combat the growing problem of immunity debt, and cite numerous MDs and most public health institutions. And they will likely end childhood vaccination programs, since natural infections are better at building immunity, and even with viruses like measles, for most people it's just a mild acute illness.

Most of those MDs won't even bat an eye about it. How can anyone even object to this now if they didn't before? And add to that massive deregulation that raises the odds of a zoonotic pandemic through even worse industrial farming practices, one of which has already been brewing for months, but met with the same obsession to minimize rather than control and inform.

It's really a perfect storm. Decades of creeping pseudoscience aligning with a completely botched pandemic whose cause and consequences have been completely separated and people who have convinced themselves that the growing problem of chronic disease can't possibly have anything to do with pathogens. In fact that exposure to pathogens is good, a message repeated by actual experts and government agencies. In addition to a weird political obsession with going against anything related to Fauci, so everything about infectious diseases.

No one could have created a more toxic combination of flaws and dysfunction, and most of it was done by the institutions of medicine themselves. They gifted their own failures to people who outcrank them. All they had to do is not do the crank part, only the science part. But they can't let got of the quackery because their egos don't allow them to accept that where the science and technology have failed so far, it's because they need to do more work, rather than that there can't possibly be a scientific explanation. They really screwed us all big time.
 
NPR: 'With Trump coming into power, the NIH is in the crosshairs'

'As the next Trump administration overhauls the federal government, the National Institutes of Health could be among the top targets for restructuring'

"I do think a potential reorganization could be important. The institutes have become very stove-piped," he says.

"There's a lot of concern that the grant-making process at NIH is inefficient, burdensome — it requires a awful lot of paperwork and preliminary data," Zinberg says.
 
To avoid amplifying speculation and directing the thread off-topic, please only post facts (such as actual policies, appointments, resignations or confirmed restructures) or links to articles mentioning ME/CFS or Long Covid
 
Mods, if you'd rather have elsewhere feel free to pivot to.

New Republic: 'Ignoring Public Health May Have Cost Democrats the Election'

'The Biden administration cut pandemic-era health benefits, and the Harris campaign failed to present any comprehensive health care reform policies. This was not an inspiring message for voters'

'Meanwhile, disability claims jumped by over a million between 2020 and 2023, largely attributable to long Covid, according to the Center for American Progress. Martha, who was left homeless and uninsured due to her struggles with long Covid, and who referenced “Make America great again” in her question, did not seem satisfied by Harris’s response.'

'Some of the NIH’s biomedical research is going into things like long Covid, which affects some 20 million Americans and counting, as people are repeatedly reinfected. After a wobbly start, this research was finally showing promising signs under new NIH leadership and a $515 million grant, as I wrote a few weeks ago. We can probably wave goodbye to any further funding at the federal level.'

'Meighan Stone, who leads the Long Covid Campaign, says it’s critical to allocate NIH funding for Covid research as quickly as possible, before Trump takes office. “[Long Covid] is impacting force-readiness for the military, it is impacting the number of Americans who are having to apply for disability, it is affecting the economic strength of the United States,” she told me last month. “This is a significant public health issue, and it’s growing. We’re getting to the level of disease burden of other concerns like strokes, heart attacks, cancer,” she continued. “This is not a red state or blue state problem, this is a problem that’s impacting all Americans.”
 
Axios Article goes over changes Kennedy has proposed:
The first is to change the focus of health care research. More federal funding should be directed to determining why people get sick, he told Axios.

The second is to adjust federal health policies to give patients more options. Americans can still get medications if they want, but Medicare and Medicaid should also cover alternatives like visits to functional medicine doctors, who focus on nutrition and exercise over pharmaceuticals, Means said.

Kennedy has called for outlawing food dyes and additives that aren't allowed abroad. He wants to devote half of the National Institutes of Health budget to researching alternative health care. And he's pressing for more transparency and data on vaccines while pledging not to take any away.
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https://www.axios.com/2024/11/14/maha-movement-federal-health-agencies
 
Jaybee00 said:
And of course the worst has come to pass…..

https://twitter.com/user/status/1857170020427595797
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It’s a bit non sequitur (a bps favourite technique)

of course it sounds a sensible thing to not have chemicals if they aren’t good and have been banned elsewhere for good reasons

I’ve no idea whether the ‘gold standard’ Will achieve actually making pesticides and food chemicals less dangerous

nevermind how it can cure anything other than those things that would be caused by future ‘spraying’ or lessen the load for those already affected but for whom load in future exposure would count

even if it was just the first of these done genuinely I’d be pleasantly surprised given what I assume is battles of ‘interests’ etc in such matters. But great.

There’s no talk here of anything ‘undoing the effects already done’? So this is where I’d get worried if there wasn’t more to it based on what we’ve seen with me/cfs and other things related to past players in our history. That feel a bit close to this like Camelford and ‘as long as the aluminium is no longer in the drinking water they can’t be ill because of it’ type claims they went through.

And that’s if something was the main cause.

I understand politics has to state hopes and dreams but it would be genuinely interesting if this was ‘and let’s see which diseases it helps to reduce the new cases of if we eliminate exposure’ - because on top of that being good to know (re usage of those vs safety measures) it could you know give clues if any of those diseases did suddenly drop in prevalence due to banning some chemical as to maybe where the mechanism might be ?
 
Here's the full tweet from Donald Trump:
I am thrilled to announce Robert F. Kennedy Jr. as The United States Secretary of Health and Human Services (HHS). For too long, Americans have been crushed by the industrial food complex and drug companies who have engaged in deception, misinformation, and disinformation when it comes to Public Health. The Safety and Health of all Americans is the most important role of any Administration, and HHS will play a big role in helping ensure that everybody will be protected from harmful chemicals, pollutants, pesticides, pharmaceutical products, and food additives that have contributed to the overwhelming Health Crisis in this Country. Mr. Kennedy will restore these Agencies to the traditions of Gold Standard Scientific Research, and beacons of Transparency, to end the Chronic Disease epidemic, and to Make America Great and Healthy Again!
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My favourite reply is
Please don’t let them take away our uncrustables*
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* an uncrustable being some sort of junk food pie
 
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He wants to devote half of the National Institutes of Health budget to researching alternative health care.

Oh boy. :grumpy:

Also, that tweet might have been posted in Trump's account, but it was definitely not written by him. He does not write in that style at all, and any suggestion that he is against the industrial-food and pharmaceutical industry is very wide of the mark, or even cares about any of it.

That came from Kennedy's office, is my bet.
 
Arnie Pye said:
I hadn't heard RFK's quote about infectious disease research until now. What reasons does RFK give for being so against it?
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He thinks money is wasted on things like COVID and infectious diseases because their impacts are overblown while chronic health issues caused by “chemicals and bad foods” and natural remedies like healthy food and exercise are ignored.

I think he also thinks reckless research into infectious disease is what caused the covid pandemic in the first place. (but not sure).
 
Dakota15 said:
FWIW, assuming RFK will be Senate-approved, I did send a 'Contact Us' form on his website to please dedicate resources for Long COVID & ME/CFS.
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I’m debating whether to do the same. I’m just not so sure whether it’s worth bringing his attention to us.

I don’t want him to fund a whole new batch of “healthy diet and exercise” type research which seems to be what he’s into.
 
Dakota15 said:
Well bringing zero to no attention to us doesn’t seem like a net-positive either. To each their own how they weigh risk there.
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I don’t see a good way forward here.
I mean too be fair, it’s not like we don’t get shit research all the time anyways, so perhaps on the off chance kennedy would fund something good it isn’t the worst idea.
 
I’m torn too. I’m sure some here are aware that I’m pretty close with my elected officials. After the Walitt debacle in Feb/March (which is already following RECOVER’s mess of burning taxpayer dollars) I was heated and met with both of my Senators and Representative (including Rep. Omar, who introduced the Moonshot Act in the House). The theme and takeaway from all three meetings was that “there’s just no accountability or oversight at NIH under the current structure.” That honestly infuriated me.

To my knowledge, this is the first time NIH is truly, really under the microscope (ie, the days of Fauci walking up to Capitol Hill and telling leadership to stand down when calls to replace Strauss were flooding the offices are over, for now at least). I was also quoted in the Minneapolis Star Tribune last fall pleading for some congressional oversight at NIH because this is feels unregulated and reckless with how they are operating.

The issue is - does RFK or this administration have the skills to reform in an earnest way? That’s the problem / obvious caveat given their interests are clearly radical. My hope is this shake-up somehow reaps benefits but I clearly understand the apprehension and hesitations. I share those same worries too.

I think if Marrazzo stays in place, I have a good feeling she’s moving things in a positive direction. Gibbons, Koroshetz have had no problem burying things and staying with the broken status quo, including who they hire/allow to work on these diseases in their institutes.

My TL;DR is I almost equally feared the status quo continuing versus a shakeup - hopefully making this institution more vulnerable to pressure - there was a cloak of invincibility, or as a HLA on a Senator’s staff said to me before “they are as close to untouchable as can be.” I think that reign is now over, with more scrutiny they’ll have to undertake than ever before, but a lot rides on if this anticipated shakeup leaves us closer to progress or further away from (does funding increase, stagnate, decrease). I just know I’ll keep trying to move things forward as best I can in the meantime.
 
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