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

Yann04 said:
The chronic disease stuff sounds promising until you realise he thinks most diseases are caused by environmental factors such as bad food and not enough exercise and random chemicals.

(Don’t get me wrong some of them are but this generalisation would be very harmful to ME/LC patients)
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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.
 
perchance dreamer said:
I agree, but I seriously doubt this would be allowed under the incoming regulation-hostile administration.
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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.
 
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perchance dreamer said:
I agree, but I seriously doubt this would be allowed under the incoming regulation-hostile administration.
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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.
 
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Jonathan Edwards said:
This is getting quite confusing!
Kennedy thinks things are overmedicalised and too much money spent but he thinks ME is an underfunded medical problem?
He talks of an epidemic of chronic disease that just needs diet and exercise but presumably that doesn't include ME?
He is against big Pharma despite their having found very good solutions to AIDS?
He talks of defunding all post-infective illness research.

It reminds me of Knoop and Ehlers Danlos.
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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
 
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On Kennedy, from the article linked in the above post
His ideas could soon be peppered into federal health policy. Mr. Kennedy has said that he would like to see an end to what he sees as the government’s “suppression” of supplements and exercise, and he supports greater insurance coverage for diagnostic tests.
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Dr. Hyman considers himself politically independent, and he has said he sees Mr. Trump’s embrace of Mr. Kennedy, a former Democrat, as a bipartisan opportunity to help the record number of Americans struggling with obesity, diabetes and heart disease.

“Whether you like their politics or not, there’s a conversation happening that this is killing us,” Dr. Hyman said. “People are disillusioned with our traditional health care system.”
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Regular exercise has long been a standard core recommendation in the Australian health system, and I would be very surprised if it was much different in the US, UK, Europe, or anywhere else.

Same for (appropriate) dietary supplements, like calcium, folate, iron, etc.

Along with a bunch of other generic 'lifestyle' stuff, like keeping weight down, not smoking, limiting alcohol consumption, getting regular sleep, etc.

There is no taboo on these things. The notion that they are being suppressed by some evil government cabal is seriously batshit insane, or just a bald faced lie by shameless grifters.

The real problem is that, for whatever reasons, most of the population doesn't pay much attention to the recommendations. Which is hardly the fault of governments and the health authorities making those recommendations.
 
Sean said:
The real problem is that, for whatever reasons, most of the population doesn't pay much attention to the recommendations. Which is hardly the fault of governments and the health authorities making those recommendations.
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I think it's easy to make an argument that the environment that government and health authorities create does affect how easy or how impossible it is for people to comply with the recommendations. People can be being told that they need to eat healthier and exercise more, while sugary carbonated drinks in disposable plastic bottles are cheap and ubiquitous, and outdoor spaces are dangerous, polluted and difficult to access. You could have schools serving nutritious school lunches to all students in spaces that encourage students to sit and enjoy the meal, or you could rely on busy parents to try to put together something in the lunch box that the children won't bring home, and not provide suitable under-cover spaces for eating in the schools.

shak8 said:
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.
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rvallee said:
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.
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Sean said:
There is no taboo on these things. The notion that they are being suppressed by some evil government cabal is seriously batshit insane, or just a bald faced lie by shameless grifters.
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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?
 
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. […]
 
Mij said:
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
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yes but he can't keep the gangs in line let alone Congress
 
Dakota15 said:
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..'
​
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”Boston Globe” said:
many concerned researchers are choosing their words carefully, saying they feel caught in the political crosshairs, amid considerable uncertainty.

Several declined to speak on the record​
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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
--
​
 
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