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

A particularly moronic example of this madness is that all mentions of 'Enola Gay' are being removed from the entire defence department, because it contains the word 'gay'.

Enola Gay is the name of one of the most famous and historically important aircraft in history – the WW2 American bomber that dropped the first atomic bomb. It is the name of the pilot's mother. :facepalm:
 
https://abcnews.go.com/US/wireStory/top-us-health-agency-makes-25000-buyout-offer-119606124

Top US health agency makes $25,000 buyout offer to most of its employees

WASHINGTON -- Most of the 80,000 federal workers responsible for researching diseases, inspecting food and administering Medicare and Medicaid under the auspices of the Health and Human Services Department were emailed an offer to leave their job for as much as a $25,000 payment as part of President Donald Trump's government cuts.

The workers have until 5 p.m. on Friday to submit a response for the so-called voluntary separation offer. The email was sent to staff across the department, which includes the Centers for Disease Control and Prevention in Atlanta, and the National Institutes of Health as well as the Food and Drug Administration, both in Maryland.

The mass email went out to a “broad population of HHS employees," landing in their inboxes days before agency heads are due to offer plans for shrinking their workforces. HHS is one of the government's costliest federal agencies, with an annual budget of about $1.7 trillion that is mostly spent on health care coverage for millions of people enrolled in Medicare and Medicaid.

More at link: https://abcnews.go.com/US/wireStory/top-us-health-agency-makes-25000-buyout-offer-119606124
 
CRG said:
https://abcnews.go.com/US/wireStory/top-us-health-agency-makes-25000-buyout-offer-119606124

Top US health agency makes $25,000 buyout offer to most of its employees

WASHINGTON -- Most of the 80,000 federal workers responsible for researching diseases, inspecting food and administering Medicare and Medicaid under the auspices of the Health and Human Services Department were emailed an offer to leave their job for as much as a $25,000 payment as part of President Donald Trump's government cuts.

The workers have until 5 p.m. on Friday to submit a response for the so-called voluntary separation offer. The email was sent to staff across the department, which includes the Centers for Disease Control and Prevention in Atlanta, and the National Institutes of Health as well as the Food and Drug Administration, both in Maryland.

The mass email went out to a “broad population of HHS employees," landing in their inboxes days before agency heads are due to offer plans for shrinking their workforces. HHS is one of the government's costliest federal agencies, with an annual budget of about $1.7 trillion that is mostly spent on health care coverage for millions of people enrolled in Medicare and Medicaid.

More at link: https://abcnews.go.com/US/wireStory/top-us-health-agency-makes-25000-buyout-offer-119606124
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Well that’s just great. So we’ll end up with an understaffed mix of Wallitt’s, “Vitamins will cure you”, and “COVID isn’t real” type people.
Welp.
 
Mij said:
The removal of "women and underrepresented" isn't woke, it is a fact that women are underrepresented in research.
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Arguing about what is or isn't 'woke' is a circular trap - if you contest something being allocated to the woke category you are by definition woke and what you are defending is then itself axiomatically woke. The new regime in Washington is defining acceptable language, and not abiding by these new language rules risks rejection or relegation including in research and advocacy matters. For now it's the political reality and researchers and advocates are either going to have to either work with it or find some way to exist outside of it.
 
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By erasing the term “disability” and “disabled”, are they aiming to return to using the word “handicapped”, or are they broadly trying to erase disability, as their inclusion of “accessibility” in the banned words list might suggest?
 
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Sean said:
disabilities
disability

They are trying to write us out of existence.
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Well, more overtly than usual, anyway.

The differences are still tiny when it comes to outcomes. One side virtue signals while doing it, the other vice signals. But they mostly pursue the same goals: if you're not useful, you're useless and therefore don't matter.

It's not as if this is a grand departure from a successful system. More of a gradual change towards making those vices seem virtuous.
 
Came here to share the list of forbidden words, and I see we've already been discussing it. Yep, "accessibility" is at the top of the list.
The Associated Press is suing over another freedom of speech attack. The idea of our press or our government employees being penalized for using common and accurate words and phrases--it truly is Orwellian.
 
Yann04 said:
By erasing the term “disability” and “disabled”, are they aiming to return to using the word “handicapped”, or are they broadly trying to erase disability, as their inclusion of “accessibility” in the banned words list might suggest?
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The general rule doesn't appear much more sophisticated than: if they can't enjoy it or use it, then it's stupid, doesn't matter, and shouldn't exist. About what a toddler applies.

It's not any more complicated than this. They look at a bunch of things and evaluate them as, can I: 1) eat it, 2) use it, 3) fuck it, 4) entertain myself with it, or 5) sell it for money? And if no, then they don't care and want it gone.

Which, again, not that much different than before. The differences are 90% over style, not substance.
 
Yann04 said:
By erasing the term “disability” and “disabled”, are they aiming to return to using the word “handicapped”, or are they broadly trying to erase disability, as their inclusion of “accessibility” in the banned words list might suggest?
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The 2025 Mandate for Leadership document https://static.project2025.org/2025_MandateForLeadership_FULL.pdf which said to be the blue print for Trump Governmental cultural change doesn't use "handicapped" and only uses disabled/disability - perhaps because this is now preferred by Veteran advocacy. The MfL has little to say about Health Reasrch other than it relates to a "pro life" agenda and to political decision making re public advice. The general tone can be gleaned from this:

"Woke Policies. Under Francis Collins, NIH became so focused on the #MeToo
movement that it refused to sponsor scientific conferences unless there were a cer-
tain number of women panelists, which violates federal civil rights law against sex
discrimination. This quota practice should be ended, and the NIH Office of Equity,
Diversity, and Inclusion, which pushes such unlawful actions, should be abolished"

US disability rights groups have previously noted Trump's personal (negative) attitude toward disability, I don't think we have any evidence of whether or not that is influencing policy as yet but we probably shouldn't see the Whitehouse as a source of constraint on negativity toward disability in the new policy regime.
 
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shak8 said:
Research proposals concerning systemic inflammation were axed at the NIH, due to the word "systemic" (on the list) because it sounds a bit like the abhorent phrase "systemic racism."
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So ridiculous. It's like their removal of photos of the Enola Gay because it contained the word "gay." This is not even being done by thinking people. They have AI combing the websites for banned words.

Or maybe the combing is being done by those nasty transgenic mice.

Anyway, the chilling effect on research, on science as a whole, is something we won't recover from for a long, long time.
 
Creek said:
It was hard enough for people with ME to get disability benefits before the firings began. Now?
"However, processing new claims — whether it be for retirement or disability benefits — may take longer since those cannot be processed without Social Security employees, Hornick said."
https://www.cnbc.com/2025/03/01/dog...rity-benefit-interruption-ex-agency-head.html
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... Only time will tell if my daughter's disability payment or my pay for being her caregiver will be paid as normal, delayed, reduced, or lost entirely. Of course the stress exacerbates symptoms of M.E.. At a medical appointment I was telling the practitioner I've had increased pain and sleep disruption since about, well, November. The impact on a personal level is huge. Then I think about the impact on our nation, and then I think about USAID and all the people losing basic health care of any sort, around the world. On a national and international level it's disastrous.

(edit: changed "Of course the stress is not great for M.E." to "Of course the stress exacerbates symptoms of M.E.")
 
This just in:
National Cancer Institute Employees Can’t Publish Information on These Topics Without Special Approval

The list of topics includes "but is not limited to" the highly specific like, "peanut allergies;" the far-reaching like, "environmental justice;" and the utter catchall, "topics that have received widespread or critical media attention." Autism is on the list, and so are vaccines, measles, and fluoride, but perhaps most relevant to this forum are "COVID-19," and "topics that have received recent attention from Congress" which means that getting Congressional hearings about ME/cfs is now less than ever before a guarantee of having any attention paid to it by federal agencies.

And since the list is specified as "not limited to" the listed topics, presumably any publication may be pulled after hours of work and review, when someone deems it to be requiring special approval. The chilling effect is almost unimaginable. How can any employee dare to publish anything, under those conditions?

https://www.propublica.org/article/national-cancer-institute-flagged-topics-vaccines-autism-rfk-jr
 
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Re: a post I posted before, sorry, I don't recall exactly how I put it, and it's gone now, but it was regarding endangerment of our disability benefits. So here's the corroboration my previous post lacked:
https://www.msn.com/en-us/money/com...n-of-benefits-ex-agency-head-says/ar-AA1A2Nfj
Article basically says that Social Security benefits are at risk. (For those not in the USA and/or not receiving disability benefits, those benefits include not only retirement but two types of disability.) Article also suggests we save money which is pretty ironic since the rules require we not have any savings.
 
https://www.science.org/content/article/nih-ax-grants-vaccine-hesitancy-mrna-vaccines

Science: 10 Mar 20257:15 PM ET By Sara Reardon

NIH to ax grants on vaccine hesitancy, mRNA vaccines
Move reflects vaccine skepticism of health secretary Robert F. Kennedy Jr

The National Institutes of Health (NIH) is abruptly terminating at least 33 research grants for projects studying why some people are hesitant to receive vaccines or evaluating strategies that could encourage vaccine uptake, Science has learned. An additional nine grants may be modified or cut back. Scientists who received these grants will receive termination letters this evening.

A person with direct knowledge of the situation says NIH has also requested lists of projects involving messenger RNA (mRNA) vaccines, which some vaccine skeptics think are unsafe because they believe, without evidence, that the vaccines could modify DNA or cause various health issues. The agency is also seeking a list of collaborations between NIH researchers and international partners on any topic. The terminations appear to be part of the agency’s efforts to defund research that does not align with policies backed by President Donald Trump and Health and Human Services Secretary Robert F. Kennedy Jr.—a noted vaccine skeptic.

Last week, on behalf of interim director Matthew Memoli, NIH asked each of its institutes to supply a list of current and future grants involving vaccine hesitancy. This morning, officials at the institutes sent a list of grants to be terminated to program officers, along with a template letter notifying awardees their grant was being terminated as of 11 March.

More at link: https://www.science.org/content/article/nih-ax-grants-vaccine-hesitancy-mrna-vaccines
 
As I said, the next 4 years will likely see the glory days of the biopsychosocial ideology, when it's fully trust front and center into a major role, hailed as the future of medicine, and so on. An ideology that is far from limited to the likes of RFK Jr, is in fact something the profession is very enthusiastic about. And it will fail spectacularly, as it always does. I doubt it will make any of the die-hards change their minds, or many onlookers in the profession, but wow is this hollow flim-flam carnival barking about to crash and burn on stage.

I really do wonder how serious people will look at it displacing real science, though. I guess it all seems innocent and harmless when it competes in places where science isn't applied, pseudoscience is perceived as acceptable for "pseudoillnesses", but I can easily see this being pushed into all those places where biomedical science delivered, doing things like replacing chemotherapy, immunotherapies and other treatments being replaced with kale smoothies and a walk in the park.

And then of course there's the issue of how years of bullshitting about "immunity debt" and infections being good for health fit perfectly into this ideology. There is about 90% overlap in both intent and meaning.

This is RFK Jr. being quoted:

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https://www.nytimes.com/2025/03/10/health/measles-texas-kennedy-fox.html
 
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