What name is given to the disease?
ME preferred by many patients ME/CFS commonly used CFS used by proponents of functional disease
Estimated numbers of patients
10 000 - 40 000 estimated prevalence of 0,1% - 0,4%
Status of recognition
Varying. Recognized fairly well by GPs in primary care in the Stockholm area and by single doctors in other areas. Unrecognized in many parts of Sweden. Recognized by the National Board of Health and Welfare and the Ministry of Health and Social Affairs. But not enough to propose guidelines for Healthcare and the National Health Insurance Agency.
Specialism used to treat ME
Rehabilitation medicine or pain clinic.
Average time before diagnosis
Waiting for answer from our survey
Guidelines used
Canadian Criteria, but with varying interpretation. In the Stockholm county guidelines are published on www.viss.nu. Some counties unofficially accept them, others not. Many GP:s find them useful.
Disability status of patients
Very varied - depending on individual officials and medical advisers at the National Health Insurance Agency. Not equivalent in the country. The situation has become worse during the last years. Many applications refused, not only from ME-patients. Large number of appeals.
Other Observations
According to EMEA-Sweden member RME's' survey, 17% have sent complaints about experienced medical care and/or neglect to the Health and Social Care Inspectorate (IVO) 29% wanted to but could not make it.
