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There’s probably a severity bias in who gets diagnosed. And also, with the majority of doctors in the healthcare system, having an ME diagnosis basically at best is an equivalent of having no diagnosis, at worst an equivalent to having a “psychosomatic disease” diagnosis.

According to Tom Kindlon on bluesky the person who published this study has a significant Conflict of Interest.

Cool. Unfortunately my problems not long term fatigue, but an illness defined by PEM.

It seems to be a sort of consistent report that for some “strong” drugs tried, a significant subset of ME patients report a worsening of their condition linked to a sort of allergic looking reaction.

Does it say how long after exercise the cognitive testing was done? Because if I overexert myself, I get a bout of what feels like adrenaline and my cognitive function doesn’t decline until the adrenaline (or whatever) wears off and PEM hits the next day. Edit: Hmm it seems they had a test...

My point wasn’t specifically about the name ME, more about the fact the Oxford criteria doesn’t have PEM.

Technically there isn’t but patients will end up stocking up on loads of drugs in most cases. Drugs for pain, sleeping, nausea/stomach problems, diziness/OI etc, and a subset also “fatigue” drugs like adderall. And that’s not counting those who try all soets of experimental stuff and expensive...

I’ve been thinking about this more, and perhaps this is pushed by pharmaceuticals. It’s much more profitable to have to “treat” every single symptom a chronic illness patient has with drugs, than to find a single drug which gets down to the root cause and treats the illness. Symptomatic...

Was there a control group? because otherwise this just fits with “natural recovery” trends.

I haven’t been following this chat, but saw a change.org petition shared on bluesky asking for Riley to step down. Incase it hasn’t beennshared yet, here it is...

New Documentary on Austrian National Television (45min) (In German) Much Suffering, Little Help – The Illness ME/CFS Trapped in an Invisible Cage – that’s how life feels for many people affected by ME/CFS. This illness, with the complex name Myalgic Encephalomyelitis/Chronic Fatigue Syndrome...

Yes fantastic read. Took me two or three goes with the brain fog but I really learnt a lot.

Now published as an Article in German. https://www.srf.ch/sendungen/kassensturz-espresso/kassensturz/long-covid-und-me-cfs-falsche-behandlungen-in-reha-kliniken Article is really good, multiple mentions of ME/CFS, and mentions a n>800 survey done by the local long COVID charity, rehabilitation...

Has it gotten better in the past couple months? I had to step away from it around 6 months ago because there was too much psychosomatic stuff, constant peddling of unproven treatments, and what seems to have been coined as “BioBS”, a bunch of people pretending they are the smartest person in the...

You’re welcome to create one, the way it was shared was ambiguous to me, and I wasn’t sure if it was a new initiative or something old resurfacing so I decided to share it here for now.

Open letter by MEAction UK asking for use of stricter criteria in research. (Basically asking to stop using Fukuda). https://docs.google.com/forms/d/e/1FAIpQLSecBUYptb8h1PZJz3IMgjg0CfzI_9bYIMAtVUsT42KBjqJG9Q/viewform

Posts split from United Kingdom: News from #MEAction Network UK Note: this is not an MEAction UK initiative. Rather it is the initiative of Adam Lowe, Caroline Kingdon and Leonard Jason Open letter by MEAction UK asking for use of stricter criteria in research. (Basically asking to stop using...

A lot of people in the local facebook groups seem to be convinced they will magically recover if they get send to a rehab clinic. The psychotherapist I was going to visit until I became too severe was one of those people. It seems that a couple of the first people who got Long COVID and...

Joanne Hunt has published a lot of stuff in this vein. More focusing on structural, social, and political issues, but also often touching on the history. Her google scholar

Swiss national radio had an 7 minute “investigation” that from the description seems good. (translated from german): Long Covid: Incorrect Treatment in Rehabilitation Clinics Patients report that their condition worsens after staying in a rehabilitation clinic: Long Covid or other...