Unequal access to diagnosis of myalgic encephalomyelitis in England, 2025, Ponting and Samms

[Yann04]

I think it’s ridiculous they think we shouldn’t acknowledge someone’s illness if the illness label has no therapeutic value.

Actually to be fair, that echos a lot of how medicine and especially psychiatry tend to treat us. “Either we can do something about it, or it’s not worth our time. Accomodation and support? Nah we don’t do that here.”

It’s a weird sort of reductionist hyperutilistarianism.

 

[BrightCandle]

I think it’s ridiculous they think we shouldn’t acknowledge someone’s illness if the illness label has no therapeutic value.

Actually to be fair, that echos a lot of how medicine and especially psychiatry tend to treat us. “Either we can do something about it, or it’s not worth our time. Accomodation and support? Nah we don’t do that here.”

It’s a weird sort of reductionist hyperutilistarianism.

its really self defeating because until that label is accepted and used you can't move on to attaching research, diagnostics and treatment improvements to it. Withholding the use of a label is the withholding of all medical progress and intervention.

 

[rvallee]

its really self defeating because until that label is accepted and used you can't move on to attaching research, diagnostics and treatment improvements to it. Withholding the use of a label is the withholding of all medical progress and intervention.

And either they understand that, which is terrifying, or they don't, which is even worse. Either option is "smash this system and rebuild it from scratch" level of "how does anything ever get this bad?!"

 

[Dolphin]

From ME Research UK:

Last month, a paper by Gemma Samms, who is a PhD level researcher working on a project funded by ME Research UK, and her supervisor Professor Chris Ponting was briefly summarised by the charity: https://bit.ly/3RsUXIB

The study, which considers the number of people with a diagnosis of the medical code most closely matching the symptoms of ME/CFS in England (International Classification of Diseases (ICD)-10: G93.3 for “post viral fatigue syndrome”), has now been written up in detail by ME Research UK, and you can find out more about what the researchers found here: https://bit.ly/4kgDdwP

https://twitter.com/user/status/1925514580509233237