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Myalgic Encephalomyelitis (also known as chronic fatigue syndrome)

Headlines in the British and Irish press:

Daily Telegraph "Doctors told they must take M.E seriously"

Guardian (UK) "ME recognised as chronic condition "

London Times '"Yuppie flu' is recognised as a real illness '

Irish Independent "ME is not all in mind, say experts"

Extracts from: The Chief Medical Officer's Report of the CFS/ME Working Group.

The Contents are: Introduction, Evidence, Nature & Impact, Management, Children, Recommendations, Appendices, and Annexes

On the 16 July 1998, at a scientific briefing to the press at the Royal College of Physicians, the then Chief Medical Officer Sir Kenneth Calman said: "I recognise chronic fatigue syndrome is a real entity. It is distressing, debilitating, and affects a very large number of people. It poses a significant challenge to the medical profession." 

Key messages

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Initial professional responses to CFS/ME can have major impact on the patient and carer.

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Clinicians should listen to, understand, and help those affected to cope with the uncertainty surrounding the illness. Early recognition with an authoritative, positive diagnosis is key to improving outcomes.

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Symptoms are diverse, but increased activity frequently worsens fatigue, malaise, and other symptoms with a characteristically delayed impact.

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All patients need appropriate clinical evaluation and follow-up, ideally by a multidisciplinary team.

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Care is ideally delivered according to an agreed flexible management plan, tailored from a generically applicable range of options.

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Therapeutic strategies that can enable improvement include graded exercise/activity programmes, cognitive behaviour therapy and pacing;

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The overall aim of management must be to optimise all aspects of care that could contribute to any natural recovery process.

"A Physician who does not admit to the reality of the disease can not be supposed to cure it." William Cullen (1710-90)

Full report and comments on Moira Smith's excellent web page, go to http://www.msmith.inspired.net.au

Government Response to the CFS/ME independent Working Group’s Report

Introduction
  1. The Department of Health welcomes the publication of this report as the start of a process of improving awareness and understanding that we hope will lead to improved diagnosis, management and treatment.
  2. We acknowledge that the Working Group was faced with a difficult task. There is widespread uncertainty surrounding this condition, along with disbelief and controversy. The Chairman, Professor Allen Hutchinson together with Dr Timothy Chambers, Chairman of the Children’s Group and Professor Anthony Pinching, Deputy Chair have made a great effort to accommodate a wide range of views and opinions as expressed in the final report.
  3. There are six main voluntary organisations active in this field. Four, Action for ME, the ME Association, the Association of Young People with ME and the Tymes Trust welcome publication of the report and contributed to the development of the report as members of the Working Group. The other two organisations, Blue Ribbons for Awareness of ME and the 25% ME Group also contributed to the development of the report as members of the Working Group, but have some residual concerns regarding the report.

    Recognition and awareness that CFS/ME is an illness

  4. The Department of Health endorses the view of the CFS/ME Independent Working Group report that there should be no doubt this is a chronic illness and that Health and social care professionals should recognise it as such.

    Research

  5. The Department of Health endorses the need for more research on a wide range of aspects of CFS/ME.
  6. The Department of Health has therefore asked the Medical Research Council (MRC) to develop a broad strategy for advancing biomedical and health services research on chronic fatigue syndrome CFS/ME.
  7. The MRC will appoint an independent scientific advisory group. The advisory group will draw on the Working Group report, other recent expert reviews of the field and research reports in the peer-reviewed literature. It will take account of available, research-relevant surveys of the concerns of patients and carers, and the interests of consumers more broadly.
  8. The Terms of Reference and timetable will be agreed by the end of February 2002.

    Improving Treatment and Care

  9. The Department of Health agrees that health and social care professionals should provide appropriate treatment and care and that knowledge and skills need to be improved.
  10. The report is not intended to be a comprehensive clinical guideline and has not been developed as such. A referral to the National Institute of Clinical Excellence (NICE) to provide guidance on management and treatment will be considered in due course.
  11. The Department of Health is also ensuring that the External Reference Groups who will be developing the two National Service Frameworks (NSF) for both children’s services and adults with long term conditions, consider this report and its recommendations for improving treatment and care.
  12. These NSFs will address some of the generic issues affecting the management of illness in childhood and adolescence and long term medical conditions in adults. NSFs set standards for treatment and care and support health and social care professionals to deliver high quality services.

    Children

  13. The Department of Health acknowledges that CFS/ME represents a substantial problem in the young, and can disrupt education and social and family life.
  14. Recent (November 2001) guidance "Access to Education for Children and Young People" includes provision for children and young people with CFS/ME.
  15. Children and Young People with CFS/ME have been subject to child protection concerns. Evidence of harm should be obtained before convening child protection procedures. The Department of Health supports the need for a further opinion from an expert medical practitioner with specialist knowledge of CFS/ME.
  16. Guidance on child protection is included in two Government circulars:

    The Department of Health’s "Working Together to Safeguard Children : a guide to inter-agency working to safeguard and promote the welfare of children" Department of Health, Home Office, Department for Education and Employment 1999; and

    The "Framework for the assessment of children in need and their families", Department of Health, Home Office, Department for Education and Employment, 2000.

    Partnership with Patients

  17. The Department of Health agrees that management of CFS/ME should take place in partnership with patient/family. The Expert Patient: A new Approach to Disease Management for the 21st Century sets out the Governments commitment and recommendations for taking this forward.
 

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