ME/CFS

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A community for people with Myalgic Encephalomyelitis (ME), sometimes called Chronic Fatigue Syndrome (CFS).

No quackery or denialism. Empathy first, is a must to participate. No unsolicited advice.

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Warning, the following is possibly negative, but I think it’s fully backed by the facts:

I don’t have the exact numbers, but with 1.65 billion invested in Long COVID (most of which has been used up) the US government must have contributed over 50% possibly over 80% of all research funds ever invested into Long COVID.

The NIH was finally starting to be more reasonable with the money they had left. They started taking input from post-viral experts and seriously including patients in the planning process. There was political will, among the governing party to pass some sort of guarantee for the next decade for Long COVID funding. (Likely, the moonshot wouldn’t have passed as is, but a watered down version would have).

Now the US population has elected a complete trifecta (looks like house is near certainly going GOP although results are yet to be confirmed), to a party which has significant portions believing various covid denialist and anti-vaccine conspiracy theories.

Trump has promised RFK near total control over Health agencies. RFK made a campaign promise that “not a single cent of public money will be wasted on infectious disease research”. This likely includes anything with COVID in the name.

RFK is a notorious alternative medicine promoter, who believes medicine has been too “pharmaceuticalised” and “medicalised”, he tweeted saying he will stop the FDA’s “suppressive measures” against “sunshine, exercise, and raw milk” (among other things).

Not only does it look like there will be no further long COVID funding in the next 4 years by the US government, but the whole (mostly) evidence-based scientific-medical establishment will be taken down, leading to an accelerated era of post-truth medicine (not that medicine doesn’t currently have issues, as we are all too familiar with).

Long COVID is a field in it’s infancy. It’s only existed for four years, and had substantial funding for three, a lot of researchers were starting to slowly interest themselves in it, perhaps even specialise in it. Now that the majority of funding is cut, these researchers, instead of consolidating their role as specialised in Long COVID, will instead look for something else with funding opportunities.

In a sense, the same fate that happened to ME risks happening to long COVID, a severe lack of career researchers and institutional recognition, in an education, research, and public health sense, risks turning Long COVID into the same sort of unofficial, neglected, and only-semi-institutionalised alternative-illness status that ME has had for the majority of it’s history.

Unless private donations or other countries massively step up, I really can’t understate how far reaching the negative consequences of this election is for us.

For the first time we had a post-viral illness with a foot in the door, we were nearly there on the way to becoming a recognised and fairly funded illness, and this election has led that door to shut in the United States, the largest health funder on earth.

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Sad day (lemmy.blahaj.zone)
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