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

I’m skimming through Kennedy’s book right now, but he seems to use the neglect of ME as an argument for his hatred of Anthony Fauci.

He seems to see ME as a biomedical illness, and says it’s chronically underfunded, but also spouts baseless claims about it being “HIV negative AIDS” and being linked to the “HHV6” virus.

 

Looking at the blurb for Kennedy's book, it seems that a lot of facts are wrong but the corruption has been at least as bad as Kennedy claims. And the incompetence as well.

 

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.

 

Relevant extracts:

 

Kennedy seems to see HIV as a sort of “manufactured” culprit for AIDS, apparently there is a broader movement behind this called “HIV denialism”. Kennedy thinks that research funding was then wrongfully nearly solely invested into HIV and therefore marginalising what he calls “non-HIV AIDS” which he includes ME.

He believes there is a sort of broad crisis of immune deficiency, which was hidden by the government with “HIV”, he thinks many chronic illnesses (especially ME) are caused by this “immune deficiency ” and that there must be some culprit, he seems to varyingly blame pharmaceutical drugs, vaccines, environmental pollutants as the cause of this “immunodeficiency crisis”.

It’s a very weird, conspiracy convoluted idea.

 

He's still an AIDS denier?!

 

Seems more like an HIV denier - which is a bit different.

 

Well I don’t know exactly how to say this.

But despite the fact he’s an anti-science conspiracy theorist who will make things worse in general, if ME advocates effectively reach him and lean into his message a little too woo him and his aides, we might be able to get a boost in funding out of these dark times.

 

We must try to get our voice heard no matter who is in office, even if they're wrong on a bunch of science issues like RFK. He's expressed a desire to take ME more seriously in some of his books, so you never know.

 

Exactly. I really hope some of our advocates who have enough energy are willing to bite the bullet and try to get us what the funding we deserve, even if we fundamentally disagree with the views of the person we are pleading to.

 

This all suggests that things will continue to be bad, just slightly differently. So, another spin of the crank wheel. It's not as if there's any real differences between the cranks pushing out the psychobehavioral woowoo or... whatever this is. It's two sides of the same bullshit patty.

Clowns to the left of me
Jokers to the right
Here I am, stuck in the middle with you

 

RFK’s only reference to Long COVID I can find.

 

Robert Kennedy Jr. & His Doctor Friends May Just be Getting Started

Doctors who are concerned about members of our profession enabling powerful anti-vaxx disinformation agents should speak up before it’s too late. But its probably too late already.

Author:
Dr. Jonathan Howard is a neurologist and psychiatrist who has been interested in vaccines since long before COVID-19. He is the author of "We Want Them Infected: How the failed quest for herd immunity led doctors to embrace the anti-vaccine movement and blinded Americans to the threat of COVID."

LINK

 

STAT News: Health and science experts on their hopes and worries for the Trump era

Lisa McCorkell, co-founder, Patient-Led Research Collaborative:

'Over 20 million American adults and children have long Covid; millions more have other infection-associated chronic conditions and have been suffering for decades. I have deep concern that existing health care access, safety net access, and research funding issues will be made even worse, resulting in severe consequences to Americans’ lives, and that more and more people will join our community if Covid continues to spread unchecked.

The Trump administration must prioritize ensuring that people can access quality health care, that a safety net is in place and is robust for those who need it, that people have the right and ability to protect themselves from viruses, and that there is significant research funding for long Covid and other infection-associated chronic conditions to get us to treatments and cures. These issues do not just impact one party — we’ve seen bipartisan support in Congress, and we’ll need additional leaders to step up to address this crisis across government.’

 

I spoke to statnews about Robert Kennedy Jr potentially leading HHSGov; this is an opportunity to reform America's health & research agencies & make sure they deliver for the American people We must work together to improve the health of all Americans LINK
https://twitter.com/user/status/1854977228414894405

 

STAT News: 'What can Trump and RFK Jr. actually do on health care?'

'However, there are legitimate reasons to call for changes in federal health agencies, said Ziyad Al-Aly, senior clinical epidemiologist at Washington University in St. Louis, and a long Covid researcher. If the pandemic was a stress test, “the readout is that we failed. Our institutions massively failed.” Whether it was a CDC too bogged down by bureaucracy to jump into action, or the RECOVER trial’s slow start, the need for reform became apparent, Al-Aly said.

 

In the U.S. state of Idaho, a health department can no longer offer covid vaccines, based on advocacy from anti-vaxxers. Now that this precedent has been set, more health departments could do the same thing in these next years.

https://www.nytimes.com/2024/11/05/well/idaho-covid-vaccines.html

 

Anyone have access...?

STAT: 'Trump’s return raises concerns about funding cuts and politicization at the NIH'

'Some policy experts, however, say the agency is overdue for reform'

 

Politico: 'Health research under Trump’s microscope'

'The NIH is ripe for an overhaul after Republicans’ victories in Tuesday’s election'

'A trifecta next year would enable them to advance their existing proposals to overhaul the NIH..'