Date sent: Sat, 29 Dec 2001 connie Collaborating Centre of the Institute of Psychiatry + WHO Geneva Hi Folks, Please find below a letter I received on Christmas Eve from Professor Rachel Jenkins, Director of the WHO Collaborating Centre of the Institute of Psychiatry, King's College, London. To help you appreciate the relevance of this letter, I've documented some background to it along the lines of a diary. Late August 2001; Complaints were made by concerned individuals and organisations to the aforementioned Collaborating Centre regarding the inclusion of Chronic Fatigue Syndrome / M.E within their Guide to Mental Health in Primary Care under the ICD-10 classification of F48.0. 29th August: - Received a personal reply from the Collaboration Centre's contact Jo Paton, explaining the text of the F48.0 section of the website was being reviewed and changes would be made within a few days to a week. 12th September - Contacted Dr.Gro Brundtland, Director-General of the WHO in Geneva and my enquiry was passed to Dr Andre' L'Hours. 16th September 2001; Jo Paton announced to all enquirers that Editorial board members available at the time had conducted a very rushed review and that amendments to the website were to be made. True to their word some amendments were applied to the website, alas the down-loadable version of the Guide and the book remained unaltered. Consequently to this day when the Guide is purchased or down-loaded one receives the unamended information including the following much complained about statements which have been removed from the website; "Chronic fatigue & Chronic fatigue syndrome-F48.0 (may be referred to as `ME')" and "Known internationally as Neurasthenia." 22nd September:- Jo Paton informs enquirers that she has ceased to work for the Institute of Psychiatry and that further correspondence should be sent to Mr Derek Flannery. 24th September Contacted Derek Flannery by e-mail but received no reply. 26th September Received air-mail letter from Andre' L'Hours, Technical Officer, Classification, Assessment, Surveys and Terminology (CAS) Evidence for health Policy (GPE) - WHO headquarters - Geneva. Posted on Co-Cure, 26 September 2001 23:40 entitled "Air Mail letter received from WHO -Geneva" 27th September Replied to Dr Gro Brundtland, Director General of World Health Organisation, Geneva regarding Dr Andre' L'Hours letter and to highlight the insufficient, inconsistent nature of the amendments to the website and to object to the inclusion of CFS and ME within the Guide in the first place. Received no reply. 3rd October Contacted Professor Rachel Jenkins, Director of the Collaborating Centre by e-mail as I have not received a reply from the contact Derek Flannery. No reply. 20th October Contacted Professor Rachel Jenkins a second time by e-mail. Received no reply. 6th November Recorded Delivery letter to Professor Rachel Jenkins, Director of the Collaborating Centre of the Institute of Psychiatry. Received no reply. 15th November Began contacting organisations listed in the acknowledgements of the Guide in an attempt to draw some attention to the concerns of many members of the public, M.E. patients and non-patients alike, with regards the inclusion of Chronic Fatigue Syndrome and M.E within the Guide. 24 November Dr Chris Manning, Co-chair for PRIMHE included in the acknowledgements as part of the UK National Consensus Group for the Guide kindly responded to my concerns and informed me he had forwarded my e-mail to Professor Rachel Jenkins. Dr Manning then forwarded to me the reply from the Collaborating Centre which was unfortunately the standard reply sent out to all enquirers on 16th September and obviously did not address the issues following the amendments to the website. 11th December Contacted Dr Andre' L'Hours once again detailing my concerns about the Guide and the fact that I have not managed to receive a reply from the Collaborating Centre of the Institute of Psychiatry, London. Have received no reply as yet. 11th December Contacted Dr Ustun, WHO - Geneva, with a similar letter to the one posted to Co-Cure, 3rd November 2001, subject heading " Letter to CMO/UK." No reply as yet. 24th December Received letter from Professor Rachel Jenkins which notes she has been informed of my December communications with Geneva. (please read below) To: Mrs. C. Nelson From: The Institute of Psychiatry De Crespigny Park, Denmark Hill, London. SE5 8AF Tel. +44(0) 20 7848 0383 +44 (0) 20 7848 0668 Facsimile +44 (0) 20 7848 0669 Professor Rachel Jenkins Director, WHO Collaborating Centre. 21st December 2001 Dear Mrs Nelson, Thank you for your recorded letter in November, your subsequent e-mails to Chris Manning and Dr Ustun and your facsimile of 11 December to Mr L'Hours. I am sorry for the delay in replying but I have been on duty travel for a substantial part of the autumn and so not everything can receive the speedy attention that I would like. Both the World Health Organisation and the WHO Collaborating Centre have noted your detailed concerns but we are reluctant to address these without broader consultation. As was mentioned in my previous correspondence, the editorial board will address the need for any further changes that may be necessary to the Guide when it reconvenes in the spring of 2002 for a consensus decision. We regret that we must now consider this correspondence to be closed. Yours sincerely cc Dr Bedirhan Ustun Dr Andre' L'Hours Dr Chris Manning