Ariel
Senior Member (Voting Rights)
Can someone explain what happened/why? I am sorry I am not familiar with this incident I would appreciate it
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UK - Chief Medical Officer's report on ME/CFS, 2002, and resignations from the working group
- Thread starter Ariel
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Can someone explain what happened/why? I am sorry I am not familiar with this incident I would appreciate it
Dx Revision Watch
Senior Member (Voting Rights)
https://www.meresearch.org.uk/wp-content/uploads/2012/11/UnhelpfulCounsel.pdf
Unhelpful Counsel? MERGE’s response to the Chief Medical Officer’s Working Group report on CFS/ME April 2002
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Page 15:
In total, six members (46%) of the Key Group refused to endorse the final report, a remarkable attrition rate for a Working Group reporting to the Chief Medical Officer of England. The four professional resigners from the Key Group argued that the report paid too little attention to biopsychosocial aspects (Clark et al, 2002). In Hospital Doctor, 17th Jan 2002, one of them, Dr Alison Round, was reported as saying that the report neglected the “biopsychosocial” aspects of the illness. Another, Dr Peter White, was reported to say, “All the evidence taken together suggests that the condition is biopsychosocial - both physical and mental factors are involved.” This kerfuffle has not been universally welcomed: in a recent debate on CFS/ME in the House of Lords, Lord Clement-Jones said, “Some recent articles written by doctors in the wake of the report are absolutely disgraceful and ignorant. I feel strongly about some of those reactive reports” (Hansard, 2002). Patients and carers can only speculate on the kind of report that might have emerged (and the different emphases that might have been placed on psychological strategies) if these professionals had ‘resigned’ at the beginning of the process rather than at the end. As a patient said wistfully, “After all that... it’s like cuckoos leaving their trademarks but not their signatures.”
From MEpedia:
Resigning from the CMO working group
[PD] White was one of the members of the Chief Medical Officer’s (CMO) Working Group for ME/CFS, a position from which he resigned due to disagreements about the final report.[6][52] White and other members who resigned found that the report played down the psychological and social aspects of the condition and concentrates on a medical model.[6] In an Editorial, White explained that criticism of the report included the “dangers of both over-medicalisation of chronic fatigue and the iatrogenic damage consequent upon that.”[62] White also disagreed with the inclusion of pacing as a recommended treatment advice, writing that “the theoretical risk of pacing is that the patient remains trapped by their symptoms in the envelope of ill health.”[62]
Dx Revision Watch
Senior Member (Voting Rights)
@Ariel
I'm afraid I don't have a list of the names of all those who refused to endorse the final Report of the CMO's Working Group on CFS/ME.
I was looking for a list a few weeks ago. If anyone has a list, I'd be grateful if their names can be added to those of:
Dr Alison Round
Dr Peter White
I think Trudie Chalder was another of the Key Group who resigned.
Dr Anthony Cleare may have been the fourth professional member to resign.
(The full list of Key Group members is on page 81 of the PDF of the Report. Copy attached. I also have the Appendices and some other associated documents.)
I'm afraid I don't have a list of the names of all those who refused to endorse the final Report of the CMO's Working Group on CFS/ME.
I was looking for a list a few weeks ago. If anyone has a list, I'd be grateful if their names can be added to those of:
Dr Alison Round
Dr Peter White
I think Trudie Chalder was another of the Key Group who resigned.
Dr Anthony Cleare may have been the fourth professional member to resign.
(The full list of Key Group members is on page 81 of the PDF of the Report. Copy attached. I also have the Appendices and some other associated documents.)
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Dx Revision Watch
Senior Member (Voting Rights)
https://www.theguardian.com/society/2002/mar/30/health.lifeandhealth
Battle fatigue
Jerome Burne, 30 March 2002
...A glimpse of the infighting behind the scenes was provided by the resignation of six of the working group just before publication, together with a few bland comments by the CMO about a larger than usual postbag on the issue. But none of this conveys the depth of feeling involved. There was no mention, say, of a vendetta by a group of patients against one of the leading consultants in the field. And no acknowledgment of a professor emeritus so infuriated by a leaked early draft of the report that, in defiance of protocol, he posted a devastating critique on the internet...
Breaking the embargo was regarded as heroic by the radical wing of the CFS community, and outrageous by at least one of the patient groups. Calls for legal and disciplinary action filled the internet news groups for weeks. It is worth remembering that these are not political activists, but many are desperately ill people - the debilitating effects of CFS have been described as worse than having a heart condition. It was the vendetta against a leading consultant, however, that provided my own introduction to the CFS battlefield...
Battle fatigue
Jerome Burne, 30 March 2002
...A glimpse of the infighting behind the scenes was provided by the resignation of six of the working group just before publication, together with a few bland comments by the CMO about a larger than usual postbag on the issue. But none of this conveys the depth of feeling involved. There was no mention, say, of a vendetta by a group of patients against one of the leading consultants in the field. And no acknowledgment of a professor emeritus so infuriated by a leaked early draft of the report that, in defiance of protocol, he posted a devastating critique on the internet...
Breaking the embargo was regarded as heroic by the radical wing of the CFS community, and outrageous by at least one of the patient groups. Calls for legal and disciplinary action filled the internet news groups for weeks. It is worth remembering that these are not political activists, but many are desperately ill people - the debilitating effects of CFS have been described as worse than having a heart condition. It was the vendetta against a leading consultant, however, that provided my own introduction to the CFS battlefield...
CMO-Report-2002.pdf (meresearch.org.uk) at p71 of the document PDF p81
Key Group Dr Trudie Chalder Senior Lecturer, Department of Psychological Medicine, Guy’s, King’s, and St Thomas’ Hospital, London (to September 2001) Chris Clark Chief Executive, Action for ME (from May 2000) Dr Anthony Cleare Senior Lecturer and Honorary Consultant, Department of Psychological Medicine, Guy’s, King’s, and St Thomas’ Hospital, London (to September 2001) Roma Grant Patient representative Tanya Harrison Patient representative and Chairperson, BRAME, supported by Christine Harrison (Carer) (from May 1999 to September 2001) Val Hockey Chief Executive, ME Association (from May 2000) Dr Nigel Hunt GP, Essex Simon Lawrence Patient representative, 25% ME Group (to Sept 2001) Dr Derek Pheby Unit of Applied Epidemiology, University of the West of England Dr Alison Round Consultant in Public Health Medicine, North and East Devon Health Authority (to September 2001) Dr Charles Shepherd Medical Director, ME Association Patricia Smith Carer Naomi Wayne Former Member Judith Waterman Former Member 71 Appendix I Membership of the Working Group Dr Peter White Senior Lecturer and Honorary Consultant, Department of Psychological Medicine, St Bartholomew’s Hospital, London (to September 2001) Patient representative (to November 1999) Former Chief Executive, ME Association (to 1999) Key Group Obser vers Dr John Loudon Scottish Executive Health Department Dr Jeffrey Graham Disability Policy Branch, Department of Health Children’s Group Jane Colby The TYMES Trust Tony Crouch Service Manager (Children with Disabilities), Essex Social Services Dr Alan Franklin Honorary Consultant Paediatrician, Advisor ME Association and Westcare Professor Elena Garralda Child and Adolescent Psychiatrist, Imperial College School of Medicine, London (to September 2001) Gerald Holmes Carer Rachel Lynds Young Person Representative, Association of Young People with ME Dr Anne Macintyre Medical Advisor, ME Association Dr Harvey Marcovitch Consultant Paediatrician, Horton General Hospital, Banbury, Oxon Jill Moss Director, Association of Young People with ME Dr Nigel Speight Consultant Paediatrician, Dryburn Hospital, Durham Trish Taylor Action for ME Alec Western Carer,The TYMES Trust (representing Anna Grace Lidstone) ME Association (to 2001) Specialist Registrar, Northamptonshire Health Authority Children’s Group Obser vers Judith Acreman Senior Nurse Therapist, Ashurst Hospital, Southampton Susan Clarke Special Educational Needs Division, Department for Education and Skills (from May 2000) Noel Durkin Child Health Services, Department of Health Kathleen Glancy Scottish Executive Observer Nigel Lindsay Scottish Executive Observer Richard Painter Department for Education and Skills Sandra Rider Department for Education and Skills Department for Education and Employment (to April 2000) Pat Griffith Former Member Dr Helen Muhiudeen Former Member (deceased) Kim Guest Former Member Mavis Moore Former Member Jonathan Hull Former Membe
The ones who resigned in September 2001 look to be Chalder, Cleare, Round, White. But it would also give Tanya Harrison of Brame and Simon Lawrence of 25% Group, which may not make much sense. There is also Elena Garralda resigning from the Key Group Advisors. Hard to make sense of apart from the obvious four.
Key Group Dr Trudie Chalder Senior Lecturer, Department of Psychological Medicine, Guy’s, King’s, and St Thomas’ Hospital, London (to September 2001) Chris Clark Chief Executive, Action for ME (from May 2000) Dr Anthony Cleare Senior Lecturer and Honorary Consultant, Department of Psychological Medicine, Guy’s, King’s, and St Thomas’ Hospital, London (to September 2001) Roma Grant Patient representative Tanya Harrison Patient representative and Chairperson, BRAME, supported by Christine Harrison (Carer) (from May 1999 to September 2001) Val Hockey Chief Executive, ME Association (from May 2000) Dr Nigel Hunt GP, Essex Simon Lawrence Patient representative, 25% ME Group (to Sept 2001) Dr Derek Pheby Unit of Applied Epidemiology, University of the West of England Dr Alison Round Consultant in Public Health Medicine, North and East Devon Health Authority (to September 2001) Dr Charles Shepherd Medical Director, ME Association Patricia Smith Carer Naomi Wayne Former Member Judith Waterman Former Member 71 Appendix I Membership of the Working Group Dr Peter White Senior Lecturer and Honorary Consultant, Department of Psychological Medicine, St Bartholomew’s Hospital, London (to September 2001) Patient representative (to November 1999) Former Chief Executive, ME Association (to 1999) Key Group Obser vers Dr John Loudon Scottish Executive Health Department Dr Jeffrey Graham Disability Policy Branch, Department of Health Children’s Group Jane Colby The TYMES Trust Tony Crouch Service Manager (Children with Disabilities), Essex Social Services Dr Alan Franklin Honorary Consultant Paediatrician, Advisor ME Association and Westcare Professor Elena Garralda Child and Adolescent Psychiatrist, Imperial College School of Medicine, London (to September 2001) Gerald Holmes Carer Rachel Lynds Young Person Representative, Association of Young People with ME Dr Anne Macintyre Medical Advisor, ME Association Dr Harvey Marcovitch Consultant Paediatrician, Horton General Hospital, Banbury, Oxon Jill Moss Director, Association of Young People with ME Dr Nigel Speight Consultant Paediatrician, Dryburn Hospital, Durham Trish Taylor Action for ME Alec Western Carer,The TYMES Trust (representing Anna Grace Lidstone) ME Association (to 2001) Specialist Registrar, Northamptonshire Health Authority Children’s Group Obser vers Judith Acreman Senior Nurse Therapist, Ashurst Hospital, Southampton Susan Clarke Special Educational Needs Division, Department for Education and Skills (from May 2000) Noel Durkin Child Health Services, Department of Health Kathleen Glancy Scottish Executive Observer Nigel Lindsay Scottish Executive Observer Richard Painter Department for Education and Skills Sandra Rider Department for Education and Skills Department for Education and Employment (to April 2000) Pat Griffith Former Member Dr Helen Muhiudeen Former Member (deceased) Kim Guest Former Member Mavis Moore Former Member Jonathan Hull Former Membe
The ones who resigned in September 2001 look to be Chalder, Cleare, Round, White. But it would also give Tanya Harrison of Brame and Simon Lawrence of 25% Group, which may not make much sense. There is also Elena Garralda resigning from the Key Group Advisors. Hard to make sense of apart from the obvious four.
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Dx Revision Watch
Senior Member (Voting Rights)
https://www.thegracecharityforme.or...0/SAYING_-NO_CAN_BE_POSITIVE_updated-2017.pdf
SAYING NO CAN BE POSITIVE Spring 2006 (updated 2017)
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19) The 2002 CMO’s Report recommended CBT and Graded Exercise Therapy despite the objection of two patient support groups. The patient support groups of BRAME (Blue Ribbon for the Awareness of ME) and the 25% ME Group refused to endorse the CMO’s Report of 2002 based on its recommended treatments of CBT and graded exercise. These support groups mainly represent the needs of severe M.E. sufferers and were part of the CMO’s Working Group.
SAYING NO CAN BE POSITIVE Spring 2006 (updated 2017)
(...)
19) The 2002 CMO’s Report recommended CBT and Graded Exercise Therapy despite the objection of two patient support groups. The patient support groups of BRAME (Blue Ribbon for the Awareness of ME) and the 25% ME Group refused to endorse the CMO’s Report of 2002 based on its recommended treatments of CBT and graded exercise. These support groups mainly represent the needs of severe M.E. sufferers and were part of the CMO’s Working Group.