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​

”Sameer Sonkusale spoke out” said:
There is a lot more anxiety here and more [people] sitting on the edge about what is going to happen ….

Finally, [the government] had the vision to do something big, and I hope they don’t go back on some of the excellent ideas. …

It’s technology-driven and ambitious and targeted…

(Tufts University professor of biological, chemical, and electrical engineering)
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Sonkusale is worried the new administration may claw back that two-year award as well as funding for the program it came from, because the initiative was started by President Biden.

The funding program is the Advanced Research Projects Agency for Health

Known as ARPA-H, it is designed to speed biomedical and health solutions

Developing wearable multimodal sensors: monitor and measure chronic pain that disproportionately affect women - a notoriously challenging diagnosis for physicians and patients.

Sensors can replace existing pain-assessment methods which are often subjective and inconsistent

The smart band-aid seeks to leverage a combination of biochemical sensing and wearable technology to provide clinicians with an objective, longitudinal view of pain responses.

By monitoring multiple cardiorespiratory and biochemical markers, and leveraging artificial intelligence and machine learning algorithms, the team aims to develop an objective scoring system for accurate pain management, while also reducing gender bias in treatment.
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Sean said:
insider groups, insider ideas, outsider groups, outsider ideas, irrational policy, irrational budgeting
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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

Ellie Dehoney said:
"…. 40 % of researchers’ time is spent on paperwork for grants.

I think this new administration wants government efficiency

So what can we do to reduce that burden ?

This is an opportunity, too.

Sometimes we are losing sight of that.”

yes dear
HE....VY​
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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​

”Dr. Nahid Bhadelia said:
We analyze patterns and predict threats from infectious diseases

We intend
to
step-up-our-public-outreach.

Maybe we
hold-more-sessions,
invite people
to
come-in-and-ask
questions,
have
more-webinars
….and
engage-the-community
to
build-back-the-trust-in-science,

Kennedy stated that he would shift priorities from infectious disease research, which would leave the United States less prepared to contain outbreaks.

.Scientists have increasingly linked viral infections to chronic diseases such as long COVID and multiple sclerosis, which is associated with the Epstein-Barr virus, illustrating the need to robustly fund research on both.
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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

​
”pioneering geneticist George Church said:
… witnessed peaks and valleys in federal funding

... take reassurance from how, over time, private industry has ended up augmenting or advancing research underwritten by the government

... such as when NIH-funded genome technologies were replaced by significantly cheaper commercial innovations.

=== When you squish something, it kind of goes in a new crevice,

=== You block one crevice, it goes in another.

=== So I think that’s probably what will happen.

--- I really believe that science keeps marching forward no matter what
--- and the politicians just take credit for it.”
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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]
 
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.

More recently, Robert F. Kennedy Jr., Trump’s nominee to run the Department of Health and Human Services, which oversees the NIH, has said he wants to fire and replace 600 of the agency’s 20,000 employees and shift research away from infectious diseases and vaccines, which are at the core of NIAID’s mission to understand, treat and prevent infectious, immunologic and allergic diseases. He has said that half of NIH’s budget should focus on “preventive, alternative and holistic approaches to health.” He has a particular interest in improving diets.
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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."
 
Yann04 said:
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
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He has said that half of NIH’s budget should focus on “preventive, alternative and holistic approaches to health.” He has a particular interest in improving diets.
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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.
 
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

New York Times said:
The W.H.O. has become a target of conservatives over its work on a “pandemic treaty” to strengthen pandemic preparedness and set legally binding policies for member countries on surveillance of pathogens, rapid sharing of outbreak data, and building up local manufacturing and supply chains for vaccines and treatments, among others.

Talks on the treaty broke down last year. In the United States, some Republican lawmakers viewed the agreement as a threat to American sovereignty
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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
Amid a deluge of executive actions, the Trump administration has directed federal health agencies to pause external communications, such as regular scientific reports, updates to websites and health advisories, according to sources within the agencies.
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The memo told health agency employees to have all documents and communications - including regulations, guidance, notices, social media, websites and press releases - reviewed and approved by a presidential appointee before issuing them. It also directed employees not to participate in any public speaking engagements without approval, and to coordinate with presidential appointees before issuing official correspondence to members of Congress or governors.
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The directive also told employees to notify higher-ups of any documents or communications that should be exempt either because they’re required by law or because they’re critical for health, safety or other reasons.
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A source familiar with the directive said that while it wasn’t entirely unheard of for an incoming administration to ask for a pause to review information before it’s publicly released, the scope of the order appeared to be unusual. Another said there were no similar restrictions on communications issued at the beginning of the last two administrations, and said employees were fearful about their jobs.
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Link
 
Turtle said:
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.
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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).
 
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