Some Open Questions to Dr Charles Shepherd and the UK Myalgic EncephalOPATHY Association: Re Dr Shepherd's internet post of 28 September 2010: "The new MEA website was launched today: http://www.meassociation.org.uk" I note that the MEA website headline welcome comments state: "Welcome to The ME Association, also registered as The ME Society. We provide information, support and practical advice for people who are affected by ME/CFS/PVFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome), their families and carers. We also fund and support research, and offer education and training." I would appreciate it if Dr Shepherd/ The Myalgic Encephalopathy Association would please publicly answer the following questions? 1. Where, precisely, the disease entity "Myalgic Ecephalopathy" appears in the tenth revision of the World Health Organisation of the International Classification of Diseases as operative in the UK or, alternatively would they confirm that it does not appear there? 2. Is the ME Association aware of the fact that past UK Government Ministers and the Department of Health have stated their formal acceptance of of WHO ICD 10 section G93.3 disease taxonomy concerning Benign Myalgic Encephalomyelitis (ME) and Post Viral Fatigue Syndrome (PVFS)? 3. Why did The ME Association change its name from one indicating a disease entity formally recognised by the WHO ICD 10 (Myalgic EncephaloMYELITIS) to one indicating a disease entity with no such WHO recognition (Myalgic EncephalOPATHY)? 4. What steps did the ME Association take to inform members of the pitfalls of abandoning WHO disease taxonomy in re-naming itself and please would you tell me if the ME Association have logged concerns and objections made by your membership on this point and if and where such concerns can be viewed? 5. Has either Dr Shepherd personally or the organisation now known as The Myalgic EncephalOPATHY Association ever made any representations to the World Health Organisation in the past ten years to ask them to in any way change the wording/ categorisation of Benign Myalgic Encephalomyelitis / Post Viral Fatigue Syndrome (also referred to in the ICD 10 index as Chronic Fatigue Syndrome) currently listed in ICD 10 at section G93.3? 6. What is Dr Shepherd's/ The ME Association's response to the following concerned comments of Dr Bruce Carruthers, principle author of the International/ Canadian ME/CFS Diagnostic and Treatment Protocols on the question of using the name Myalgic EncephalOPATHY in place of the WHO-recognised term Myalgic EncephaloMYELITIS? The Politics around this are horrendous, and the motive for any name change would seem to have less than the good of mankind at heart. I would not favour any kind of name change, since -itis is well established in the name ME, and there is no good reason for changing it, since - opathy would not reduce our state of ignorance re ME but serve to further confuse everyone- perhaps that is one of the motives behind the suggestion." (Dr Bruce Carruthers, 2005). Note that this quotation was emailed to me personally by Dr Carruthers in 2005 with a view to such comments being made publicly known after I spoke with him in person about such concerns at his Norfolk UK lecture on ME/PVFS/CFS. The email text is viewable online with additional comment on the INVEST IN ME website at: www.investinme.org/Article%20010-Encephalopathy%20Carruthers.htm I have asked these questions publicly because I believe they are a matter of important public interest: particularly given ongoing steps by the WHO to undertake an 11th revision of their ICD, given the said relaunching of The Myalgic EncephalOPATHY Association website and given the fact that The Myalgic EncepalOPATHY Association charges Myalgic EncephaloMYELITIS patients money for membership and services. I am concerned that, in failing to regularly and adequately draw their members' and potential members attention to such concerns on disease labelling/taxonomy regarding the 'opathy' question, the ME Association may be effectively misleading them as to the true World Health Organisation classification of their illness and the pitfalls of not adhering to WHO ICD 10 classification as it currently applies in the United Kingdom. Public answers to such concerns/ questions by Dr Shepherd and The ME Association would therefore be most welcome. Kevin Short. firstname.lastname@example.org [Permission to repost].