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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?

I’ve been to that station so many times before I even knew what ME was. It’s surreal seeing a pic like that in a place I used to know.

If it reassures you the studies look slightly more biomedical/observational here in Switzerland. Although most seem to exclude people with an ME diagnosis. One tries to measure disease course through exercise capacity (if taking an exercise test every few weeks aint a confounding factor I don’t...

Yep. Cool project to have a database though. I just wish there was a way to inform people about enrolling in potentially harmful stufies.

That’s a really short and undescriptive abstract for a paywalled article. But: Is not the best sign as far as I know

Rizkalla said Moderna has no cure in the offing. He said the company is waiting for the science to develop around how the condition works before it begins “active research into solutions.” Well I won’t be too optimistic then…

Epistemic injustice, healthcare disparities and the missing pipeline: reflections on the exclusion of disabled scholars from health research. Abstract: “People with disabilities are subject to multiple forms of health-related and wider social disparities; carefully focused research is required...

Oh god: Hemel Long Covid Sufferer attempts World Record A Hemel man is attempting to break a world indoor rowing record despite having suffered with Long Covid for nearly four years. Nick Molloy is a former world record holder and current British record holder in 100m and the minute distance...

I mean I feel like that would be a more accurate name than chronic fatugue syndrome, I feel more half-dead than fatigued. And as I’m sure other severe people can relate, I’ve had a couple times where I actually thought I was dying.

So the FND crowd are claiming that people who can’t see properly in whom they can’t find organic abormalities are malingering/mentally ill? Oh god. I feel like one day we’ll have functional cancer; “yes this cancer is the result of negative perceptions and poor mental health.”

Too tired to extract quotes, but the canary just dropped a banger on the Lightning Process — https://www.thecanary.co/uk/analysis/2024/05/23/lightning-process-long-covid/

For anyone unfamiliar with who they are here is the pinned tweet on their profule in the article written by Paul Garner: Serendipity ultimately led to a path of recovery far too few have access to. An academic colleague connected me to someone who had recovered from chronic fatigue...