The way some people with chronic fatigue and other similar conditions are treated in the UK (and other healthcare systems) is atrocious. The permanent harm caused to many people by graded fucking exercise therapy or dismissiveness is huge.
The genderedness of presentation is huge, women are much more likely to experience most of the recognised auto-immune conditions like lupus or MS. Add other marginalisations to that like ethnicity and... I recommend
Rebel Bodies which talks a lot about the genderedness of this stuff as well as other intersectionalities like ethnicity, LGB and transness etc. There's lots of case studies as well as discussions with medics trying to increase recognition and improve quality of care around these issues.
I have nothing good to say about the doctors and academics who publish misleading lies like the PACE trial. This was not an accident. They did it to promote their careers at the expense of people with CFS and they should be struck off for the harm they have and continue to cause. With great power, should come great responsibility. Instead of focusing on finding solutions and strategies, they reverted to the largely sexist "it's in your head". (And I'd argue that even if it is psychosomatic, it doesn't make it less real, see rants passim re things like Functional Neurological Disorder FND). We separate the body and mind stupidly, yet we know trauma and poor mental health correlates strongly with poor physical health (and vice a versa).
There are also wider issues relating to medicine, how we train healthcare practitioners to deal with situations they can't fix and or don't (yet) understand.
I've had "experts" (with very good reputations in some cases) literally blank me mid-consultation and cut me off with nothing, cos something about me flummoxed them.
I've also had excellent practitioners who listened, made sure there was nothing sinister going on and then were honest about what they did understand and what they didn't + limitation of treatments and then asked me if they could help me in any other way. In some cases those good medics have written me letters validating my issue, being honest about their understanding or treatment limitations as well as identifying me as an expert in my own needs and management strategy. Those letters have helped me not get blamed and gaslighted so much outside of the medical case and in part enabled me access to things like benefits that let me have money to help cover extra costs of disability or afford support options.
I'm even considering writing to 3 of the best excellent practitioners to tell them how much of a difference they made to my life at the time and in 2 cases I now have more pieces of the jigsaw (some which were only published after the time I saw them).
