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

THE SCIENTIFIC REMEDIES

1. INVESTIGATOR:
Its edgy. Our AI measures pain. We got BIO-markers. Leave us alone
- Biden thinks big. Don't pick on Biden

Seems like the wrong thing to say​

 

soon to be overtaken by events

 

I'd not thought of all that, it would be so hard to get perspective on all of that in the middle of all that, also in my case 6 interconnectied clusters gets all too complicated, scrambles the brain, no wonder i couldnt work in one or hardly engage one, and now the crazy spite wants unleashing does it now

it might be more anti-regulation than anti-science tho maybe its the same thing if science is self-disciplined

If govt dismantles its science base its on the way to get science industrialised and thats where the graduated boys and girls and ex nih seasoners wiil be working

seems the industry takeover bidders expect to snap up a deregulated genome project, pain sensor, pandemic watch and post-pandemic watch

I can't imagine how to measure pain with a.i and a learning machine and some biomarkers and sensors, I didn't know there was already an obectivre consistent to measure pain

the statement says "existing pain-assessment methods which are often subjective and inconsistent"

 

THE SCIENTIFIC REMEDIES

1. INVESTIGATOR (see post above):
-- Its edgy.
-- Our AI measures pain.
-- We got BIO-markers.
-- Leave us alone
-- Biden thinks big. Don't pick on Biden

Seems like the wrong thing to say​

others hope that Trump’s vow to reduce wasteful federal spending
through a new Department of Government Efficiency
may actually end up benefiting them
by cutting down on
onerous-requirements.

It took
The Policy Vice President Wonk (Non-Partisan)
to work out that
our Elon’s Dept of Govt Efficiency
wants government efficiency:

​

2. POLICY:
-- Regulation is a drag.
-- Lets all deregulate
-- we love this .......... opportunity to junk the junk
-- we admit it was rubbish paperwork

Seems like the right thing to say

but bang goes the updated Helsinki ethic on rigourous discovery

- or can one sell methodically productive research without doing much paperwork ?

Is it really 40% of a years skilled work to file for a grant ?​

3. POST-INFECTIOUS-DISEASE WATCH
-- lose the pandemic watch
-– Patient engagement to win back trust

look don't touch

but thats not participation​

Maybe​

4. GENE PIONEER:
== Onward Christian Soldiers
== Trade wil replace Governement
== squish it out and it finds a new gap.
== Industry always waiting to take over

a genome trade enthusiast won’t sink

​

wow cancel the politicians wheeeeee

who paid the politicians for the start-ups
we did

now we can pay the other angels
to channel their inner us

​

[/QUOTE]

 

https://twitter.com/user/status/1875812262906368088


Important read on Jay Bhattacharya's NIH nomination and why it's very bad. (And if you think the author is a "leftist," you are so barking up the wrong tree.

https://socialimpurity.substack.com/p/lets-talk-about-merit-again

 

Certainly Wikipedia makes him out to be a pernicious fool - arguing for herd immunity etc.

 

The Second Trump White House Could Drastically Reshape Infectious Disease Research. Here’s What’s at Stake. (Propublica)
Donald Trump’s pick to lead the federal health agency has vowed to replace hundreds of staffers and shift research away from infectious diseases and vaccines. Such an overhaul could imperil the development of life-saving treatments, experts warn.

https://www.propublica.org/article/nih-niaid-trump-kennedy-bhattacharya-vaccines-research

 

FWIW, I sent some resources and publications to new incoming NIH Director Jay Bhattacharya on LC & ME. Sharing his message back this morning (I know just words and lip service, but sharing for sight)

Bhattacharya: "Thank you. We will need good science to make progress for so many suffering patients."

 

From now on, everyone is going to be in the business of rehabilitation. Yipeeeee!

Maybe it won't be biopsychosocial the exact way the ideologues want it to be, but it will be biopsychosocial. And holistic. And useless. And as is tradition, they will be getting most of what they want, and will hate it.

 

Politico: “She Was the Face of Trump’s Anti-Trans Ads. She’s Still Optimistic About the Future.”

Reporter: "You spent a lot of time at HHS focused on how climate change affects health care as well as the federal response to long Covid. Both initiatives are in jeopardy by the new Congress and administration. Where are you leaving this work?"

Levine: 'One of the things that we have said is that we know long Covid is real. Long Covid might not be one thing. It would be easier if it was, but it might actually not be one thing. It might be a constellation with different causes. We have a clinical definition of long Covid that was published by the National Academy of Sciences, Engineering and Medicine. And so I think that we have made progress. I think one of the biggest things that we’ve worked on is long Covid centers that I think are really important, multidisciplinary centers throughout the country that serve as referral centers, as well as hub and spoke centers, to the community.'

 

“Saying Farewell & Sharing Thoughts on an Exciting Time for NIH Research” by Monica Bertagnolli

'I’m very proud of this and many other programs and initiatives that advanced during my time here, including the NIH Data Science Ecosystem, a new component of the Researching COVID to Enhance Recovery (RECOVER) Initiative called RECOVER-Treating Long COVID (RECOVER-TLC), and a new Women’s Health Research Initiative. I’m optimistic that with the dedicated work of NIH leaders, these programs will continue to thrive in the years ahead. I’m excited to see the many ways the work of NIH will continue to touch people’s lives.'

 

Being satisfied when nothing was actually accomplished while people who will undo all of it in a week are about to take control, and likely shut it all down, sure is a good set piece for why the world is in such a dire state, why only technology progresses and nothing else.

But I'm sure our psychobehavioral overlords will have a great time for the next 4 years. Truly, I think a lot of money is heading their way, more than they know what to do with it. Which will obviously be the same thing they have always done, just more expensive, longer and, somehow, worse.

 

Trump Withdraws U.S. from World Health Organization
Public health experts say U.S. withdrawal from the W.H.O. would undermine the nation’s standing as a global health leader and make it harder to fight the next pandemic.

https://www.nytimes.com/2025/01/20/...e_code=1.q04.UIWN.E_pQ2-5DtFRi&smid=url-share

 

Do we need a members only support thread? And I am not even American.

 

Maybe Mr Trump prefers big business & philanthropy

A lot can happen in a year, and it can take a year to divorce the WHO

Then Mr Trump's plan can exclude his Centre For Disease Control from global pandemic data. But he can't just stop paying into the WHO this week. And the WHO can't just stop funding USA researchers

Also:

The WHO funds Programmes For
Traditional, Complementary and Integrative Medicine

But plainly there are other means afoot:

- e.g The Osher Center Philanthropic Advisory Committee at
The Harvard Catalyst: Osher Center for Integrative Health

- with the research for complementary medicine provided for by
The NIH < NICH Funding Priority and Research Focus

Mr. Trump may sack the WHO, and prune the NIH, telling philanthropy and big-business to fund their own start-ups in future (and employ the ex-government staff, and fund the Covid, Long Covid and ME/CFS researches)

This was observed by George Church (No.4). Seen here, #144, offering his "reassurance from how, over time, private industry has ended up augmenting or advancing research underwritten by the government"

- well lets not go all Pollyanna, because there is not always good to be found in everything. But this may bring about one good thing:

It may stop Dr Wallit, et al, from overwhelming Dr Nath, admininstratively, just to obtain the especially advantageous WHO Grants for Traditional, Complementary and Integrative Medicine.

But then Dr Wallitt and Mr Trump have the national network of Osher Centers, to fall back on, instead. Since Dr. Wallitt prefers to research, advocate and treat a mind-body connection in ME/CFS

If Mr Trump won't subsidise Dr Wallitt's mind-body connection, then is big business really likely to? Surely it would rather research an anti-viral or a vaccine. Nor is philanthropy likely to sustain a mind-body clinical practice

And there remains something researched to be done for Long Covid too. For the income support of increasing numbers of people crippled, in the Covid aftermath and by ME/CFS too. Mind-body connections don't put people back in work, pay the rent, and sell the vaccines, food and drugs, let alone raise taxes to fund the smaller government

 

CNN: Trump administration directs federal health agencies to pause communications

Link

 

This send a shiver down my spine.
I don't need BPS anymore for a shot of adrenaline, just watching the news will give me an overdose.

 

I’m having a real hard time these past couple weeks. It feels like the world’s going back to an attitude on disability rights from the past century, electing people that worship those who did forced sterilisations and forced euthanasia of disabled people.

We’re especially vulnerable as pwME. It’s hard to be positive. It feels like science is losing. We need science, not prejudice and the tools that help rationalise it (I think psychosomatics is a big one).