Action for ME (AfME): Statement: NHS Collaborative Conference

ME agenda note: Action for ME have been highly selective in their choice of speakers to include in this statement. Conference speakers also scheduled to give presentations include: Professor Trudie Chalder (Kings College London), Dr Mary Burgess (Kings College London) and Vincent Deary (formerly of Kings College London CFS Unit).

Statement from Action for ME (AfME) regarding the NHS Collaborative Conference

NHS Collaborative Conference
01 August 2007

Action for ME and AYME, the Association of Young People with M.E., are supporting the National Network for CFS/M.E. Therapists and National NHS Collaborative Conference, which will be held in Milton Keynes, 4-5 October 2007. The event, which is being coordinated by the North Bristol NHS Trust, is primarily for health care professionals from the National Network for CFS/M.E. Therapists, Clinical Network Champions and representatives from Coordinating Centres.

It will incorporate the National Network’s AGM, a CFS/M.E. Champions and Coordinators meeting and the inaugural meeting of the Royal College of Paediatrics and Child Health Paediatric CFS/M.E. Special Interest Group.Conference speakers will include Professor Gijs Bleijenberg, Dr Brian Marien, Professor George Davey-Smith, Dr Manny Bagary and Dr Julia Newton.

Sir Peter Spencer, Chief Executive, Action for M.E. said:

“Action for M.E. played a major part in bringing NHS specialist services into being following its work in support of the Chief Medical Officer’s report on M.E./CFS in 2002.

“This conference offers M.E./CFS service providers from across England the opportunity to exchange views on what they have learnt about best practice in treating people with M.E.

“The event will provide Action for M.E. with an ideal opportunity to monitor developments and to actively represent the views and experiences of our members on the basis of previous surveys and recent correspondence.

“We will also be able to increase our understanding of the financial sustainability of these services in different areas – a major cause of concern since ring-fenced funding ceased.

“Although we do not support all of the views that will be expressed, we do encourage professional discussion, confident that in this multidisciplinary environment there will be a strong element of constructive debate by all parties and specialisations.”

Sir Peter will be making the opening presentation at the beginning of the conference and describes the role of Action for M.E. at this event as that of a “critical friend – and in some respects highly critical.” The aim of the Trustees is to work with the NHS to develop treatments that provide the greatest benefit for the greatest number of people with M.E. and especially the severely affected. Another key aim is to campaign vigorously for more research into the causes, prevention and cure of this dreadful illness.

Further information about the event is available here or in a previous posting on ME agenda here


One thought on “Action for ME (AfME): Statement: NHS Collaborative Conference

  1. I am most disappointed that AFME has endorsed the Pace Trial. I was randomly selected to CBT via the trial, and it was quite apparent that the treatment was flawed from the outset.

    a) The therapist misled me by saying he had a 99% recovery rate.
    b) He could not answer basic questions as to how he measured recovery.
    c) I had been told by Dr. Andrews (the doctor I see at the WGH) that the therapist was a clinical psychologist, only to find out he is only a psychiatric nurse who has then done a diploma in psychotherapy; I received a letter of apology re this only after bringing it to her attention and pointing out the discrepancy via Edinburgh University Pace Trial Website.
    d) After I told the therapist that I was disengaging from the trial, he phoned me 3 times to attend a meeting with him – although it states that you can leave the trial at any time and don`t even have to give a reason. Although the therapist had said the purpose of the meeting was to wish me well for my future, he was very angry and defensive at the meeting due to me disengaging; he obviously had pressure on him to keep his numbers up – but that was no reason to treat me in such a way.
    e) It was quite apparent during the 6 sessions I had with the therapist that he was more interested in his research findings than genuinely helping me and my CFS. All in all I found the whole experience to be quite damaging, particularly as my expectations were falsely raised and the therapist behaved quite unethically at the last meeting – no doubt due to pressure upon him to get the desired results via his research subjects.
    I think it is incorrect for Action for ME to support and endorse such a trial, and am most disappointed that is does so.

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