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

Long a ‘Crown Jewel’ of Government, N.I.H. Is Now a Target
The agency long benefited from broad bipartisan support. But Republican criticism has intensified, and new choices for top health posts hope to upend the organization.

https://www.nytimes.com/2024/12/01/...e_code=1.eE4.2Gq1.aklTQr9NodT3&smid=url-share

 

I'm not against them cleaning up food and getting rid of the ultra-processed foods. It's estimated that 75% of disease is preventable and eating poor quality food is at the top of the list.

 

I agree, but I seriously doubt this would be allowed under the incoming regulation-hostile administration.

 

Yes, it would be great to have salt-free and corn syrup-free and soy product-free processed foods here in the US. Corn and soy are subsidized here and cheap and added to almost any and every food product.

But you can imagine the agency regulation (laws) and enforcement staffing for that. And suing companies who don't comply.

Certainly protecting the air and water (the EPA's job) and the pesticide monitoring and food safety (FDA's job) are important to the public, as well.

 

This is the hilariously absurd part of it: everything they are talking about here would involve regulations, so will never happen because they are fundamentally against regulations. Might as well be an everyone-gets-a-unicorn program for all that it's realistic.

It's the same thing with blaming lifestyle choices involving food and physical activity. No one is going to provide cheap nutritious food and enough free time for people to do any of this, so it will also never happen. Not even countries with strong safety nets do those. It's silly to even talk about it because a single snowflake has more chances of surviving in the nose of a firing rocket engine.

It's the core flaw with the biopsychosocial approach that thinks it would be smart if GPs could prescribe physical activity and other silly things like that. All you end up with is an expensive piece of paper, for which you are expected to do things you could already have been doing and will have to pay for just the same. Lots of health insurers subsidize gym memberships. So what? The problem isn't there when we live in societies that explicitly want to keep people financially struggling all the time.

While they have become obsessed with biopsychosocial, they completely ignore, willfully IMO, that most of those are actually socioeconomic. This has been known for decades, and still people delude themselves.

Complete fantasy-based worldview.

 

The thing about these "alt right" people is that they are often contrarian and like to go against the established practices just for the sake of it (like denying AIDS/HIV).

This often ends up in very silly shenanigans but, as crazy as it might sound, it could turn out to be a big opportunity for ME research - because this is maybe the only illness where doctors have always, consistently, got everything wrong and ruined millions of patients' lives.

I encourage the people here to adopt a pragmatic approach and think about this angle. Sometimes, progress in life comes from where you least expect it.

 

Merged
He Built a Wellness Empire While Adventuring With Robert F. Kennedy Jr.
Dr. Mark Hyman, a “functional medicine” proponent and longtime friend of Robert F. Kennedy Jr., is finding powerful allies in his bid to treat disease with blood tests and supplements.

Ugh!

By his mid-30s, after spending a year working in China, he found himself similarly suffering from an unexplainable constellation of symptoms, including fatigue, brain fog and food allergies.


https://www.nytimes.com/2024/12/18/...e_code=1.ik4.S_rw.s_Ko4esom2xf&smid=url-share

 

Yes. Ever been to a doctor and they can’t figure out what’s wrong with you, two things will be said.

1) Make sure to eat properly and exercise and reduce stress
2) Are you often anxious/stressed/depressed?

 

https://thedispatch.com/article/mainstreaming-junk-science/


Mainstreaming Junk Science
Robert F. Kennedy’s views on health may have more popular support than we think.

 

"I suffered from chronic fatigue syndrome...It is by far one of the most curable 'diseases' out there...Food, exercise, and lifestyle are ALL . . . "

 

The Hill
RFK Jr.’s nomination gathers steam after Senate meetings

GOP senators seem to be embracing the potential for Robert F. Kennedy Jr. to lead the Department of Health and Human Services, despite his controversial views on vaccines and pro-abortion record.

Kennedy was initially thought to have a difficult path to confirmation, but after meeting with some two dozen senators this week, many seemed ready to look past his political baggage and focus on areas of shared interest. […]

 

Donald Trump’s transition team is pushing to pull the US out of the World Health Organization on the first day of the new administration, according to experts who warn of the “catastrophic” impact it would have on global health.

LINK

 

yes but he can't keep the gangs in line let alone Congress

 

Boston Globe: '‘There is a lot more anxiety here’: Scientists brace for shake-ups to health funding under Trump'

'Dr. Elias Zerhouni, NIH director under President George W. Bush, said in a briefing Friday..he is now deeply concerned about NIH’s future..'

 

This might have been the same under the previous regimes. I sometimes think all institutions tend to hold prejudice and blacklist dissent. This regime reinforces the fear with threats to decommision big chunks in line for ongoing commissions​

..

 

Derived from the Boston Globe report linked above:

Index

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​

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
-- will lose pandemic preparedness
-– Patient engagement to win back trust

its not participation its look don’t touch​

​

4. GENE PIONEER:
-- Onward Christian Soldiers
-- Trade always did replace Government start-ups
-- Squish it out and it finds a new gap
-- Industry always waiting to take over

a genome trade enthusiast won’t sink
--
​