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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...

I’m saving that picture it’s gold, thanks for bringing it up

As far as i know that drug is supposed to decrease inflammation through the microbiome. On ME-pedia it says atleast 2 different clinical trials have been started but none published, I wonder if they will be published in future or it was found to be ineffective. Given there are no published...

Was a little dissapointed seeing the ME Association’s tweet on the matter. A bit too neutral for an organisation supposed to protect patients in my opinion.

Yeah I’m not saying I endorse them. Just that that might explain why this renegade research seminar includes remission biome.

Can’t remember which but I think renegade research is “run by” remission biome, or the other way around.

Somewhat related question but if I’m very severe since 19 so basically not moving at all and on high dose PPI for life, I assume I’m quite at risk of developing ostheoperosis? If so, should I be taking a calcium supplement?

Maybe try a different browser/try removing add blocker? It did take some time to load for me and seemed a bit clunky. Worked on safari mobile for me though. @Binkie4

Oh fair enough. Should I keep this thread for those that don’t fit into regional news?

To start it off: https://www.onlymyhealth.com/tips-to-manage-chronic-fatigue-syndrome-in-middle-aged-women-1715946649 Chronic Fatigue Syndrome Affects Almost 10-15% Of Middle-Aged Women: Doctors Share Management Tips — Onlymyhealth in certain cases, fatigue may be severe and long-lasting...