18. marts 2004 From Angela Kennedy : The issue of Encephalopathy and the WHO - points for consideration 1. Dr. Costa e Silva from the WHO, in the nineties (first published in Quest, a Canadian patient publication), may have stated that "the use of the term 'benign myalgic encephalomyelitis' should be avoided until the status of this condition has been clarified". However, this was 10 years ago. Since then, Dr Saraceno , also from the WHO, has written, on 16th October 2001: "I wish to clarify the situation regarding the classification of neurasthenia, fatigue syndrome, post-viral fatigue syndrome and benign myalgic encephalomyelitis. Let me state clearly that the World Health Organisation (WHO) has not changed its position on these disorders since the publication of the International Classification of Diseases, 10th Edition in 1992 and versions of it during later years. Post-viral fatigue syndrome remains under the diseases of nervous system as G93.3. Benign myalgic encephalomyelitis is included within this category." 2. Regarding the above, there have been no further publicised statements by WHO representatives presented to the contrary. 3. The term Chronic Fatigue Syndrome (CFS) is currently recognised by the WHO, under ICD-10 G93.3, as a neurological disease, and by another name that ME is known as. It is NOT chronic fatigue, which is classified elsewhere in ICD-10. (under F45). Any attempt to link chronic fatigue to the Chronic Fatigue Syndrome is disingenuous, and can be corrected by reference to ICD-10. 4. This means, that currently, CFS is actually a safe term for those wishing to ensure that ME is recognised as neurological, not a psychiatric disorder. The term CFS is therefore, ironically, certainly safer than Myalgic Encephalopathy in the context of WHO classification. 5. The term Myalgic Encephalopathy currently has no classification by the WHO. 6. The above classification of Myalgic Encephalomyelitis was clarified (NOT changed), after a WHO Collaborating Centre, King's College, incorrectly classified ME (and the other name by which it is also known, Chronic Fatigue Syndrome) as a mental disorder. 7. Currently, neither of the cases for encephalopathy OR encephalomyelitis have been verified or falsified. Medical opinion is divided, or undecided. The issue is NOT that of doctor's expertise versus patient preference. Many medical experts, for example the Canada Protocols authors (Carruthers et al), Dr Elizabeth Dowsett, and Dr Byron Hyde continue to use Myalgic Encephalomyelitis. 8. At least one British psychiatrist, Peter White, who promotes the notion that ME/CFS is psychosomatic in various ways, as well as promoting CBT/GET, has used Encephalopathy interchangeably with Chronic Fatigue Syndrome. This indicates that Encephalopathy COULD be used in a psychiatric context, whether linguistically 'correct' or not. 9. Britain is a signatory to ICD-10, and therefore bound by its rules. For this reason, WHO classification of Myalgic Encephalomyelitis as neurological is extremely useful to those in Britain wishing to ensure ME sufferers are NOT classed as mentally ill. This is also the case for all other countries who abide by the WHO regulations. 10. The issue of encephalopathy versus encephalomyelitis is currently, for patients, political. People opposing encephalopathy are generally only opposed to its use FOR THE TIME BEING, because of it's lack of WHO classification. They are not necessarily opposed per se to the name itself. 11. In time, even IF the case for Encephalopathy is proven and Encephalomyelitis disproven, the name would, should, only be changed with international consensus and WHO approval (i.e. by WHO Classification as a neurological disease), through proper process. 12. Currently, for the above reasons, unilateral moves to promote Encephalopathy undermine and destabilise the WHO classification of Myalgic Encephalomyelitis as neurological. The critical danger with this is that the psychiatric hegemony may take advantage of this instability to promote ME/CFS as a mental disorder. Angela Kennedy