This article tells how the date of August 8th was chosen because it was the birthday of Sophia Mirza who died of ME after being abused by the hospital system and social workers who insisted she needed mental health treatment for what is well known to be a serious, life threatening disease. Sophia had an autopsy done thanks to the solid thinking of her mother and the medical examiner found from spinal fluid and other evidence just how desperately ill Sophia had been. As far as I am aware Sophia’s mother has not received so much as an apology for the shocking treatment her daughter was subjected to.
In the UK the 25% ME group work hard on behalf of those far too sick to campaign for themselves. On more than one occasion I have seen crass stupidity from those who should know better, saying that patients with ME need to stand up for themselves more – showing a complete ignorance of just how sick a large proportion of ME patients are.
Say a prayer for all those in the 25% group and for those who have been there or are heading there. ME is no respecter of persons so add a little prayer of gratitude if you don’t have it.
(My situation: I don’t know if I really have ME or not. I was dx by a doctor who was more interested in spouting off the mantra of “GET/CBT” than in listening to why I had actually been referred to him – which was for worsening Fibromyalgia (more recent research is showing FMS is a form of hyperadrenergic pots, ie dysautonomia). I received the dx without my knowledge until my GP mentioned it in passing.
As Ramsay was the most well respected researcher into ME outbreaks across the work I tend to think he should be listened to. He insisted that those of us with a dx of dysautonomia should be excluded from a dx of ME. This was probably because he saw the symptom overlap as too great.
I was recently told that a doctor specializing in ME/CFS has suggested that as many as 96% of his ME patients have a form of dysautonomia. Perhaps if we were shifted to the Dys umbrella the seriously ill ME patients would get better research and care).