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

Sly Saint said:
'Not a real paper': Scientists say MAHA report cites nonexistent sources



'Not a real paper': Scientists say MAHA report cites nonexistent sources
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It looks like they've updated the report: https://www.whitehouse.gov/maha/

Here's an older version from New York Times (PDF)

Examples of references to non-existent papers:

420. Farber, H. J., Wang, G., Guerra, J., & Tsao, K. (2017). Overprescribing of Oral Corticosteroids for Children With Asthma. Pediatrics, 139 (Supplement 1), S58 – S59​

522. Findling, R. L., et al. (2009). Direct-to-consumer advertising of psychotropic medications for youth: A growing concern. Journal of Child and Adolescent Psychopharmacology, 19 (5), 487-492​
 
Sharing for relevancy

1) Boston Globe: '‘Unrecognizable and highly toxic’: NIH staffers speak out ahead of Senate hearing on budget cuts’

'More than 300 staffers signed a letter to the NIH director urging him to stop politically motivated cuts and delays to research grants’

2) AP News: 'NIH scientists publish declaration criticizing Trump’s deep cuts in public health research'

“I want people to know how bad things are at NIH,” Norton told The Associated Press

3) Washington Post: 'NIH scientists have been angry for months. Now some are rebelling'

'More than 90 NIH scientists sign their names to the “Bethesda declaration” in protest of Trump administration policies they say are harming people’s health’

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Link to paper: 'The Bethesda Declaration: A Call for NIH and HHS Leadership to Deliver on Promises of Academic Freedom and Scientific Excellence'

Our Concerns

This Administration has forced NIH, under your watch, to:

1) Politicize research by halting high-quality, peer reviewed grants and contracts. Academic freedom should not be applied selectively based on political ideology. To achieve political aims, NIH has targeted multiple universities with indiscriminate grant terminations, payment freezes for ongoing research, and blanket holds on awards regardless of the quality, progress, or impact of the science. Based on political preferences and without input from NIH scientific staff or Congress, NIH is censoring critical research and programs addressing:

- COVID-19, long COVID, and immunization. We still have much to learn about the health and social consequences of COVID-19 and our response. Such research is needed to reduce the risk of future pandemics, optimize pandemic response policies, and address the well-documented and debilitating consequences of long COVID.
 
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Moving video of Jenna Norton, NIDDK Program Officer and one of the NIH signers of the Bethesda Declaration
(link goes to Bluesky post)

She talks about why she signed.

Here's a transcript for those who have trouble watching videos
(it's my attempt at a transcript, please let me know if you find errors)
So while you see three of us sitting here today, speaking to you in our personal capacities, we are speaking on behalf of hundreds of NIH staff who are standing up together to say, "We dissent."

Because what is happening at NIH is so egregious, the harms that we're seeing happen to our research participants, and to public health, and to the institution of science, are just things that we could not live with.

And the NIH that I am working in now is unrecognizable to me.

Every day I go into the office and I wonder what ethical boundary I'm going to be asked to violate, what probably illegal action am I going to be asked to take.

And it's just soul crushing. And that's one of the reasons that I'm signing this letter.

One of my co-signers said this, but I'm going to quote them, because I thought it was so powerful:

"You can get another job, but you cannot get another soul."

I am so scared about doing this. But I am trying to be brave for my kids because it's only going to get harder to speak up.

Right now the censorship that we're experiencing at NIH, isn't happening just at NIH. It is happening at every single federal agency, it is happening in academia, it is happening in the media, and it is happening writ large across society.

And I want my kids, as I'm sure every American wants their kids, to grow up in a place where they can speak freely without risking retaliation from their government.
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NPR: 'NIH scientists call on director to protect biomedical research'

'In the Bethesda Declaration, the scientists say the Trump administration has "forced NIH, under [Bhattacharya's] watch" to "politicize" research, "stigmatize" studies about health disparities, and cut research into COVID-19, long COVID, the health impacts of climate change, and medical issues related to gender and intersex people among other important areas'
 
RFK Jr has just fired the entire CDC vaccine advisory panel, stating that he wants to reestablish public trust in the health system.

That would be the trust he spent his life doing a comprehensive smear and demolition job on.

Will probably appoint Andrew Wakefield as the replacement for the whole panel.
 
Saw this on a bsky thread. This week, RFK Jr fired everyone on the federal vaccine panel, and is replacing them with cronies. Not surprisingly, many of those are connected to the "Great Barrington Declaration", which advocated for mass infection through natural infection as a way to build herd immunity to COVID, and whose ideas were eventually universally adopted. Just like the NIH director, who was one of the loudest voices, they are all connected to far right money networks.

One of those annoyingly loud voices, who kept being platformed while whining about being censored, was Martin Skulldorf, who was a professor at Harvard, but got fired for misbehavior. He is now on the vaccine panel.

Here's something I noticed in an article Skulldorf wrote in a journal co-founded by NIH director Bhattacharya.

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Thread for more:
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I expect so-called evidence-based medicine to be the belle of the ball in US health research. It's perfect for quacks and cronies, basically tailor-made to be exploited in pushing pseudoscientific narratives. Everything is set up for it, thanks to our biopsychosocial overlords (and helped along by a profession indifferent to some forms of quackery, who will find out that they have to stand against all of them, not just some).
 
This is someone's brain on biopsychosocial, or at the very least this is where biopsychosocial brain inevitably leads to:
"The real debate here is whether we can solve public health problems by developing treatments like vaccines, antibiotics, or other drugs? Or whether we will solve these problems by strengthening people's immune systems through healthier habits?" says Gregg Girvan, a resident fellow at the Foundation for Research on Equal Opportunity, a Washington think tank. "And my response is, 'Why can we not acknowledge that there is truth in both positions?'"
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Healthy habits (behavior) > healthy thoughts > healthy brain > healthy body. The most fundamentally important reason for experts not to give one nanometer of space to pseudoscience is that where one creeps in, they all follow, by disabling the very defense mechanisms that protect from it. It lowers the bar for everything. Correlation can become causation. Biased open label trials with zero objective outcome are even better than rigorous science. We are already here.

The only topic I have ever seen trolls and conspiracy fantasy communities overlap in opinion with experts is generally over this, the nexus where magical mind powers overcome the physical reality we live in. There is very little difference between this and psychobehavioral beliefs, they point in the same direction. Especially while biomedical research is being dismantled, it leaves only this generic mess of myths and superstitious beliefs.

 
New ruling, from a Reagan appointed judge (Republican, same party as Trump), saying that the NIH grant cuts were illegal:

Judge rules some NIH grant cuts illegal, saying he’s never seen such discrimination in 40 years
Associated Press said:
A federal judge ruled Monday it was illegal for the Trump administration to cancel several hundred research grants, adding that the cuts raise serious questions about racial discrimination.

U.S. District Judge William Young in Massachusetts said the administration’s process was “arbitrary and capricious” and that it did not follow long-held government rules and standards when it abruptly canceled grants deemed to focus on gender identity or diversity, equity and inclusion.

In a hearing Monday on two cases calling for the grants to be restored, the judge pushed government lawyers to offer a formal definition of DEI, questioning how grants could be canceled for that reason when some were designed to study health disparities as Congress had directed.

Young, an appointee of Republican President Ronald Reagan, went on to address what he called “a darker aspect” to the cases, calling it “palpably clear” that what was behind the government actions was “racial discrimination and discrimination against America’s LGBTQ community.”

After 40 years on the bench, “I’ve never seen government racial discrimination like this,” Young added. He ended Monday’s hearing saying, “Have we no shame.”
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Note, this only applies to a small fraction of the cuts:
Young’s decision addresses only a fraction of the hundreds of NIH research projects the Trump administration has cut — those specifically addressed in two lawsuits filed separately this spring by 16 attorneys general, public health advocacy groups and some affected scientists. A full count wasn’t immediately available.

While Young said the funding must be restored, Monday’s action was an interim step as the ruling could be appealed.
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Edit: Some commentary on this ruling
 
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