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

It's not LC or ME related but I didn't know where else to post this.

Btw, Vinay Prasad is also on Bluesky now.

A simple Litmus Test for RFK Jr.'s Ideas

The media describes the new HHS chief as a conspiracy theorist. But how many of his ideas are actually used in Europe? More than you’d think.
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Jaybee00 said:
Do you recommend reading this or will it just make my blood boil?
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He makes some good points on eliminating food additives, dyes/colouring in foods (cereals) produced in the USA vs Euro which we discussed here on the Kitchen forum.

In Conclusion
Just because another nation does things differently does not mean it is correct. What it usually means is the other country’s health rules are worth studying and debating. Right now, the media is covering RFK Jr. poorly and unfairly, giving him no credit for ideas that are well within the bounds of discussion. My simple rule makes sense: If other nations are doing it, we should be willing to look into it. And RFK Jr. should not be called a conspiracy theorist for holding that view.
 
Or to the days which may not have happened yet, where everyone goes to carnival on their 30th birthday.

Yes, it may be personally inconvenient, briefly, but think of all the people who are not liked, or whose policies are not liked, who stubbornly and willfully oppose everything not in their interests, who simply wouldn't exist any more.
 
11/19/24, 'RFK Jr, the Department of Health & Human Services, and Myalgic Encephalomyelitis' by Hillary Johnson

"Kennedy might be a champion for people with ME if for no other reason that he understands like few others in public life that NIH, CDC & FDA often get things terribly wrong"

'How much does Kennedy know about ME? A great deal more than most people.'

'He is a skeptic who judges the federal health agencies as they should be judged'

'For several decades Kennedy has been an independent agent, operating as an investigative gadfly. He’s been attentive to big issues that have received less than adequate attention from the nation’s public health bulwarks, the CDC and NIH'
 
"What connects RFK Jr.’s appointment with ME is the fact that Kennedy’s mandate from Trump dovetails with his own desire to address chronic disease. ME is nothing if not chronic at the moment—but is it the kind of chronic disease Kennedy seeks to target? Trump and Kennedy seem to be talking about diabetes and obesity, which are commonly described as avoidable chronic diseases because they are often fueled by poor diet. They tend to be considered avoidable with behavioral changes. So far, Kennedy has yet to issue any statements that indicate his focus will be on chronic diseases caused by viral infections, such as post-Lyme and the mother of them all, ME, which are not behavioral".

It’s possible to advocate for improving food quality while also supporting the appropriate use of medications like ‘Ozempic.’ Framing these as mutually exclusive choices reflects a misunderstanding of how diseases develop and are managed.

How is he going to frame ME?
 
A lot of people live in what's termed food deserts, where there are few, if any, nearby grocery stores where people could buy healthy food like produce. For some people, a poor diet is caused by a lack of reasonable access to grocery stores, not a desire to eat unhealthy food from nearby quickie marts.

If RFK wanted to help, he could at least advocate programs that would stock buses with produce and other healthy food and go to food deserts at set times to let people buy healthy food at low prices. Some cities have these programs staffed by volunteers. Calling poor diet a lifestyle choice shows a real lack of nuance.
 
Likely to be the next FDA commissionner, Marty Makary, part of the same Great Barrrington network as other nominees (like the likely NIH director):
WSJ article from 2022 said:
The Exaggeration of Long Covid
Lingering symptoms after a respiratory infection are common. Most cases are too mild to worry about.

Long Covid is real. I have reliable patients who describe lingering symptoms after Covid infection. But public-health officials have massively exaggerated long Covid to scare low-risk Americans as our government gives more than $1 billion to a long Covid medical-industrial complex.

The Centers for Disease Control and Prevention claims that 20% of Covid infections can result in long Covid. But a U.K. study found that only 3% of Covid patients had residual symptoms lasting 12 weeks. What explains the disparity? It’s often normal to experience mild fatigue or weakness for weeks after being sick and inactive and not eating well. Calling these cases long Covid is the medicalization of ordinary life.

Two studies published this month put long Covid in perspective. The first, in the Journal of the American Medical Association, looked at a spectrum of wellness indicators in 1,000 people who recovered from symptomatic Covid or another respiratory infection. It found that 40% of patients who had tested positive for Covid “reported persistently poor physical, mental, or social well-being at 3-month follow-up.” For Covid-negative patients who had other upper-respiratory infections, the figure was 54%. Covid patients did better than non-Covid patients. While there are certainly unique hallmark conditions of Covid, such as loss of smell, any respiratory infection—flu, RSV, other cold viruses—can knock you down for a while.

The second study, in Lancet Regional Health, looked for long Covid in 5,086 children 11 to 17 and found that symptoms present during infection rapidly declined over time. The researchers found that among children who tested positive and negative for Covid “prevalence patterns of poor well-being, fatigue and Long COVID”—defined by its symptoms without the need for a past diagnosis of the disease—“were broadly similar.” (The study also found that loneliness in children increased steadily in the year after Covid illness.)
My bolding

https://www.wsj.com/articles/the-ex...ty-children-bivalent-restrictions-11670857268
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Yann04 said:
They can’t be serious this would be hilarious if it weren’t so depressing.
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Hey, we are the powerful lobby that never managed to get anything done. So powerful. Yet so weak.

I'm not sure which is worse: those who deny it and don't even feign sympathy, or tone like his, and the same as our BPS overlords, where they have fake concerns and play act sympathy but they want the exact same things as the deniers, just go about it in a different way.
 
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