What name is given to the disease?
• ME is preferred by the patients
• CFS is used by all institutions in Belgium
• CFS is used by psychiatrists and other health professionals.
The diagnostic codes being used are:
• Fukuda criteria
• The government is waiting for NICE to review their guidelines!
Estimated numbers of patients
• Estimates used are 20.000 to 40.000 patients
Status of recognition
• They do not recognise diseases in Belgium only the level of disability
• Strong lobby from University of Gent, University of Leuven might be changing
• They try to push Burn-out in Belgium
Specialism used to treat ME
• Internal Medicine, Psychiatry look at it from the CBT and GET perspective.
• Professionals who look at it seriously are usually doctors in private practises. E.g. Endocrinology
Average time before diagnosis
• varies from 6 months to years
Guidelines used
• Fukuda criteria
• The government is waiting for NICE to review their guidelines!
Disability status of patients
• We have a fairly good social system but not for ME/CFS patients because they are considered not ill enough! Therefore, they bounce back and forth from sickness benefits, disability benefits to unemployment due to health.
Other Observations
• Some psychiatrists are making sure people receive their benefits and are protected by the system.
• Budget cuts are causing difficult situations.
• Unions, who are supposed to help patients get their rights and benefits, tell patients that they do not have to go to court because they will lose.
• Our health system is going to be reformed.
