ME/CFS
- thesicktimes.org My Mom was disabled by ME, but I didn’t understand until I developed Long COVID. I wrote an apology letter to her. - The Sick Times
Dear Mom, Thirty years later, I finally understand. Do you remember the year 1994? You got sick when I was a child, and you weren’t ever the same again. At first, it was a cough and congestion But as days gathered into weeks, you spent more time in bed Why are you so tired, I asked myself. What happ...
https://en.wikipedia.org/wiki/Main_Page
Although I have no idea who looks at the homepage. Still, every little bit helps.
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.
- theconversation.com Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal
The co-lead of the world’s largest ever genetic study into ME calls for a radical change in how society deals with the disease.
- www.s4me.info ME/ CFS post doc post at Medical university of Vienna
In case it's of interest for someone [MEDIA] ME/CFS genetics postdoc post available at the Medical University of Vienna. The position is either...
cross-posted from: https://mander.xyz/post/19804345
- thesicktimes.org Five reasons why the NIH should retract the “effort preference” claims in their intramural ME/CFS paper - The Sick Times
In February, the National Institutes of Health (NIH) published a controversial paper that aimed to characterize myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS). The study, published in Nature Communications, took eight years and cost $8 million. Participants flew in from...
- crowdfund.berkeley.edu David Tuller's Trial by Error Spring 2024
Help UC Berkeley raise $65,000 for the project: David Tuller's Trial by Error Spring 2024. Your gift will make a difference!
- www.theguardian.com Not a single bed set aside to treat ME in any UK hospital, says NHS director
Father of Maeve Boothby O’Neill, who died in 2021, says it is ‘shameful’ that health system is unable to treat the disease
- youtube.com Medical Education on PEM & Pacing #MedEdMonday
#MEAction and Patient-led Research Collaborative have created a four-part video series focusing on post-exertional malaise and pacing. Each video includes an...
cross-posted from: https://mander.xyz/post/18748327
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- sarah-jaynelewis.muchloved.com Tribute to Sarah-Jayne Lewis, 1974 - 2024
Dedicated to the memory of Sarah-Jayne Lewis