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

[forestglip]

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



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

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​

 

[Sean]

Which is exactly the sort of professional irresponsibility and cowardice that has allowed this shitfest to go for so long.

 

[Dakota15]

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’

----

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.

 

[Yann04]

NIH is censoring critical research and programs addressing:

- COVID-19, long COVID, and immunization

Very useful for documentation and advocacy purposes to have it written out so clearly. Thank you for sharing.

 

[ahimsa]

Another article from CNN:

NIH employees publish ‘Bethesda Declaration’ in dissent of Trump administration policies

I liked this quote (I think it's also included in other articles)

The research terminations “throw away years of hard work and millions of dollars,” the NIH staffers wrote. “Ending a $5 million research study when it is 80% complete does not save $1 million, it wastes $4 million.”

 

[ahimsa]

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.

 

[Dakota15]

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'