Some great stuff in this post....
In my survey with Action for ME, 58% of people who had a social care assessment said they didn’t think the assessor accepted their illness or disability as genuine. 38% of those who may have qualified didn’t ask for help out of fear that they would be judged as undeserving of help, not considered genuine, or simply they wouldn’t be understood when trying to explain the impact of ME on daily living. They said things like:
“The social worker told me that "everyone gets tired"
“The social worker said I should go swimming every week and do more exercise even though she could see I couldn't even stand up without falling onto the floor and my legs were going into visible spasms on that day.”
These statements from social care professionals echo messages in the media just a few weeks ago claiming that ME is “not a real illness” and can be cured by positive thinking and exercise. Statements of this kind have been popping up in the mainstream media for the last 30 years. They occur every time a certain highly organised and highly influential group of psychiatrists publishes the result of a trial of treatment for ME involving exercise therapy and/or cognitive behavioural therapy claiming positive results. It would not be surprising if they had influenced social care professionals’ attitudes to people with ME.
The peculiar stigma of ME/CFS is this: as author Toni Bernard put it, we have been branded not credible witnesses to our own condition.