Journal of IiME Volume 2 Issue 2 www.investinme.org R Reeaassoonnss wwhhyy MMEE DDooeess NNoott BBeelloonngg ttoo tthhee MMUUSS CCaatteeggoorryy (continued) patients with referrals due to fatigue. The centre gets unnecessary large numbers of referrals of patients presenting with fatigue with questions about ME/CFS. This is despite the strict guidelines that were developed for referrals with specifications of the examinations that should be performed beforehand. Dr Spickett and his colleagues’ experience shows that quite clear guidelines have not led to a reduction of patients who get another diagnosis in connection with investigations at the specialist centre. This is a clear indication of how difficult it is to diagnose and specialist competence is actually needed. This is especially important when there is no confirming diagnostic test and one depends on the use of internationally approved diagnostic criteria on every single patient. At present the general practitioners do not have enough knowledge of ME, some don’t even believe in the diagnosis and many have big problems in dealing with this group of patients. The Diagnosis is approved by the Social Security/ NAV – strict criteria The State Social Security informed in a circular to local social services in Norway, 30. May 1995, that the condition must be accepted as an illness. The requirement was that certain criteria had to be fulfilled (Holmes criteria, 1988; Fukuda criteria, 1994). The State Social Security (now NAV) thought that this would involve a small amount of cases and these had to be evaluated in a wholly concrete manner. Dr Haukenes and Dr Aarli (1995) thought that the diagnosis of Post Viral Fatigue Syndrome (PVFS) should be used for this type of patients, but only after a thorough clinical evaluation. Therefore there were strict criteria for diagnosis. In their article Drs Haukenes and Aarli (1995) discussed the biomedical functional abnormalities that were known at that time. The diagnosis was officially approved by the State Social Services in 1995 with the following Invest in ME (Charity Nr. 1114035) description: G93.3. Post-Viral Fatigue Syndrome/ Benign Myalgic Encephalomyelitis (ME): Notification no 3/99. The illness must have brought on a considerable reduction in functional ability, i.e. more than 50 percent, where the revenue ability is reduced by more than half. The duration requirement is set to 34 years without sign of improvement in order to be awarded disability benefits. ME has been in the Norwegian version of ICD-10 given the diagnostic code G93.3. Before the diagnosis of ME can be given, MUPS (e.g. neurasthenia, chronic fatigue –F48.0) (ICD-10, 1991) must be ruled out. It is important to remember that both the NAV rules and regulations and the State Social Welfare law is legally binding for all healthcare personnel. The diagnosis is allowed rights in NAV’s notification that was revised 01/06. NAV suggest that the condition should be diagnosed using criteria formulated by the Centers for Disease Control and Prevention in USA. The CDC writes on its website that there is international concensus on the Fukuda definition, and it is used both for research and clinical use: http://www.cdc.gov/cfs/cme/wb1032/chapt er1/overview.html Internationally the Fukuda criteria have been criticised for being too broad and thereby including people with fatigue, but who do not have ME. The discontent with the Fukuda definition led to a strong need for clinical criteria. An international panel with experienced clinicians and researchers, with a mandate from Health Canada, therefore prepared clinical guidelines for diagnosis (Carruthers et al, 2003: http://www.mefmaction.net/documents/jour nal.pdf . These guidelines reflect the patients’ situation best. President of the International Association of CFS/ME, Professor Dr Klimas PhD, has encouraged researchers and clinicians in using these, together with Fukuda criteria, in order to be able to compare research selection. Page 73/74

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