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It may be nothing compared to other diseases but that’s more than half the yearly NIH budget for ME/CFS. And as far as I know it is either the most or second most expensive study done on ME. (not sure how it compares to PACE, currency coverted and inflation adjusted)

Reminds me of Wessley calling the PACE trial “a thing of beauty” (https://www.nationalelfservice.net/other-health-conditions/chronic-fatigue-syndrome/the-pace-trial-for-chronic-fatigue-syndrome-choppy-seas-but-a-prosperous-voyage/)

I have a general feed set up for google news to catch the keywords long covid and me/cfs and it mostly works well but once in a while it randomly regurgitates something 1+ year old, it’s really weird.

I thought that article was really well done. I’m just a little annoyed they got the single mention of ME as “chronic fatigue”. Though to be fair it is not clear if they are referring to ME/CFS or chronic fatigue in general, but it is certainly confusing to claim there is a “condition” called...

Donated.

Don’t know where to put this but this thread seems the most relevant. I created an rss feed for Trial by Error so people who get their news via RSS can be notified when a new blog comes up. https://politepol.com/fd/yNgKhc4c7HHu.xml

I really wish someone in the ME world was connected to her in some way or had the resources to make a convincing pitch

We encourage researchers and service providers, as well as people with Long Covid to join our community on the Covid-19 Research Involvement Group on Facebook. Sounds interesting…

I feel like this is basically everything in relation to ME/CFS. Man we need so much more funding…

That actually makes a lot of sense Forestglip. Claude AI by Anthropic based on the “Harmlessness through Constitutional AI model” ie. making the model go through extensive stages of supervised and reinforcment learning where it is trained to abide to a strict ethical guideline. This reduces...

Trial By Error: The Michael Sharpe Crowdfunding Effect https://virology.ws/2024/05/26/trial-by-error-the-michael-sharpe-crowdfunding-effect/

I noticed that Chatgpt is much more inclined to psychologise ME when you call it CFS than when you call it ME/CFS. An example: My promt: Regarding [Name] was Simon Wessley right, or are those critiquing him right? Short answer only please Answer for Name=CFS: The controversy around Simon...

“Biden’s got a plan to protect science from Trump” - Politico https://www.politico.com/news/2024/05/27/biden-plan-protect-science-trump-00160001 Somewhat interesting read about a new NIH office meant to prevent political interfering and how Republicans have pushed NIH and the CDC to minimise...

I can’t help but think that if all the money given to Phil Parker’s buisness (it must be multiple millions) was invested into advocacy or charities the life of the average ME patient would be non-negligibely better off.

When I got extensive blood testing my Coq10 was found to be very low. Way outside normal range. I thought that was just an ME/CFS thing, and taking coq10 supplements didn’t change anything for me, but now you’ve got me wondering…

I applaud your approach @JohnTheJack. Nice to see that some of the people who write articles that we consider as harmful are humans too, and open to feedback.

Thanfully it’s published in MDPI which means it won’t be taken too seriously. Because this study frankly just feels insulting.

They must. That would be a rookie mistake. Please tell me they do, otherwise I’m losing a lot of trust in basic conpetancy.

The way I make sense of it is that humans always seem to have to find a reason for why they got better from a disease. People have claimed praying to deity cured them, or that taking a placebo drug did. If you go on any of the long covid communities who contain a lot of new people, the majority...

Have their been any published smaller-scale trials showing promise?