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

Kennedy downplayed the measles outbreak in Samoa and continued to suggest that the vaccine itself was responsible for the high death rate and not the measles.

 

Senate Confirmation hearing yesterday:

"I just want vaccines to be studied" says RFK Jr

Yes Bobby... it's an absolute mystery as to whether they work

 

Given that everything before Long Covid here is a lie, this would actually be hilarious if it were satirical comedy. But very unbelievable. Reality is so much dumber than fiction.

The only good thing that could come out of this is that the people who will be in charge are very likely to find all the mind-body garbage to be hippie horseshit. The only question is what other nonsense will fill the place instead.

For sure there will be very little interest in viruses, immunology and anything scientific, but with people like Walitt in charge and the complete mess that RECOVER has been so far, it's mostly a lateral move, from horseshit to different horseshit.

 

Rolling Stone: 'RFK Jr. Made Promising Statements on Long Covid. Too Bad the Rest of His Plans Undercut Them'

'During his confirmation hearings, the nominee for HHS secretary said he'd focus on chronic conditions like Long Covid — but if confirmed, would he really follow through?'

 

Nature: ‘High anxiety moment’: Biden’s NIH chief talks Trump 2.0 and the future of US science’

“Monica Bertagnolli details her concerns about Robert F. Kennedy Jr and his ‘Make America Healthy Again’ campaign”

“Our experience with COVID and with infectious disease over the last hundred years has taught us how critical it is that we not only stay on top of emerging threats by being prepared with countermeasures, but also because we do have so many more tools now to understand what viral infections can do to the body’s defences, like in long COVID.”

 

Mother Jones: “I Work at NIH. The Fear Among Staff Is Palpable.”

“It felt like all functions of our job had just been completely stripped away, like the system had been completely crippled.”

https://www.motherjones.com/politic...ump-funding-freeze-chaos-chilling-effect-dei/

 

The Sick Times: “RECOVER hasn’t been impacted by Trump freezes so far, sources say. But the program’s future is still uncertain.”

“The Long COVID Campaign applauds Mr. Kennedy’s strong support today for continued Long COVID funding” said Meighan Stone..

 

The Sick Times: Breaking: Vital Long COVID data taken down following Trump order

The data from the Household Pulse Survey has been uploaded to the Internet Archive.

 

I think I was hoping I'd misread that and you wrote 98.5%. How much is 98.5 gig? Not that much, in the grand scheme of things?

 

It’s really hard to tell. Many research datasets are only a couple mb.
But maybe you have a big one that for some reason includes image or video files and it’ll easily take up 50-60 gb.

So I really don’t think file size is a very useful measurement here, would be more interesting to know what proportion of Datasets were saved.

 

HuffPost: “CDC's Advisers Demand Agency Provide Answers On Removal Of 'Critical' Health Data”

‘They want an explanation for why the agency took down information used for planning disaster relief, studying medical outcomes and helping at-risk populations’

“Nearly every member of an official advisory committee to the U.S. Centers for Disease Control and Prevention has signed an open letter demanding the agency explain why it removed troves of vital health datasets from its website.”

 

Information on ME and Long COVID may disappear from US government websites.

Friday, the Association of Healthcare Journalists alerted its members that any health science information they are accustomed to accessing online from US government websites, they should download. https://healthjournalism.org/blog/2...-know-about-disappearing-federal-health-data/

It's a short article and a fairly easy skim, even with my acquired reading fogginess. It doesn't mention ME or Long COVID specifically but the health topics impacted already are those that have been made subjects of controversy (as have ME/cfs and Long COVID historically). At the bottom of the article there's a quick list of suggestions for their journalist members to keep important information safe and accessible.

For our community, can we archive and share studies, articles, best practices information and other essential medical science that could be disappeared? When you want to share with a friend that info on anesthesia sensitivity in ME/cfs patients, for example, you could refer them to our own archive if the info has been disappeared elsewhere. It's not enough to bookmark and share links. We need downloads and uploads and stuff. I'm no digital archivist but some of you probably know what we need to do?

 

I came to post about how to respond as a community to the disappearing info problem. I think this is something that needs its own thread: a planning and action thread for archiving and sharing data and articles that are important to us. See my reply later in this thread. This is a way we can really function as community for one another--preserving and sharing information before it gets disappeared.

 

Buckle up:

https://bsky.app/profile/darbysaxbe.bsky.social/post/3lhcvn4hxwk2o
BREAKING. From a program officer at the National Science Foundation, a list of keywords that can cause a grant to be pulled. I will be sharing screenshots of these keywords along with a decision tree. Please share widely. This is a crisis for academic freedom & science

https://bsky.app/profile/darbysaxbe.bsky.social/post/3lhcvzba7t22o
Decision tree that has been sent to Program Officers at NSF

 

The horror of all of this!

 

That is horrifying. It almost makes me want to cry. That is extreme erasure. This is blatant discrimination.

“disability” and “disabled”, “female” etc is now erased.
That’s just wild.
I can’t even…

 

Would people here be interested in a thread of the dangers and impacts of this sort of erasure — and on the threats to academic freedoms? (Would that break the rules?)

Everyone I know in real life is either “too busy to discuss”, not informed enough to have a genuine conversation, or is just ignoring all of this because they don’t want to face it, which makes this all really isolating for me.