What name is given to the disease?
ME preferred by patients ME/CFS commonly used also – even now by NICE CFS/ME used by Department of Health, ministers CFS used by psychiatrists Media uses everything
Estimated numbers of patients
Often quoted estimate between 200k – 250k.
Chief Medical Officers of UK have no idea of number of patients.
Status of recognition
Officially recognised by government Discredited as organic disease by Science Media Centre and media affiliates/friends. Powerful psychiatrist-lobby (BPS) influences in establishment Being pushed into MUS
Specialism used to treat ME
Some centres were opened years ago but mainly treated ME as mental health issue or behavioural disorder able
to be treated with CBT/GET. Perhaps two isolated centres treated ME seriously.
Neurologists generally do not treat it.
Rheumatologists, immunologists or others.
Average time before diagnosis
Varies (3-6 months to years)
NICE guidelines are being “reviewed” - existing guidelines have been discredited by patients. CCC used by more researchers ICC promoted by some patients/advocates
Disability status of patients
Draconian benefits system ideologically driven by Department of Work and Pensions, carried out by subcontractors, gives inconsistent and unfair results. Large number of (successful) appeals.