What name is given to the disease?
ME preferred by patients ME/CFS and CFS/ME used interchangeably by Dept. of Health.
CFS used by psychiatrists, hospital consultants and disbelieving doctors.
Estimated numbers of patients
Irish ME Trust (IMET) figure is 12,000. Dept. of Health figure, taken from NICE prevalence is between 9,000 and 18,000
Status of recognition
Officially recognised by government. Health Service Executive have removed webpage on (CFS) ME and are awaiting NICE updated guidelines.
Specialism used to treat ME
No specialised service in Ireland and no hospital consultant for referral.
Doctors refer to speciality based on the most prevalent symptom.
Psychiatric services are often advised. Neurologists are not interested.
Referrals to Rheumatologists are commonplace when muscle pain is prominent, at which point the patient would usually be given a diagnosis of fibromyalgia.
Average time before diagnosis
At least 6 months but can often be years.
NICE. No real Guidelines in General Practice as doctors will diagnose ME based on the patient having a “typical” mix of symptoms and once other conditions are ruled out.
Disability status of patients
Applications for entitlements would usually be rejected at first.
On appeal, there is a reasonable degree of success if the patient has a supporting doctor.