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Department of Health Press Release with respect to the Independent Working Group's Report on CFS/ME:

Friday, January 11, 2002 10:29 AM
Independent Working Group's Report into CFS/ME Published

The independent Working Group established to promote better understanding of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) today published its report. The report will help improve diagnosis, treatment and care for patients with CFS/ME.

The Working Group's key conclusions include:

• Healthcare professionals should recognise CFS/ME as a chronic illness and 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.
• All patients need appropriate clinical evaluation and follow-up, ideally by a multidisciplinary team.
• Most care can be co-ordinated by GPs with referral of patients for specialist opinion and advice where appropriate. The quality of the support, empathy and understanding of the GP is an important factor in the care of people with this condition.
• Those severely affected have specific difficulties accessing care and will need appropriate domiciliary services.
• Review of the evidence highlights the lack of good quality research.
• Therapeutic strategies identified as potentially beneficial in modifying the disease, or which can enable improvement, include graded exercise/activity programmes, cognitive behaviour therapy and pacing.

[But also see Graded Exercise, Does it Really Work? and What Does Your Doctor Believe?]

• Patients can play an active role in their care and the voluntary sector can provide support.

Children and Young People

For children and young people, CFS/ME can be a substantial problem. Children do get CFS/ME and can be profoundly affected.

• Prompt, accurate and authoritative diagnosis is important and second opinions needed if doubt exists. Care is best co-ordinated by an appropriate specialist, usually a paediatrician.
• Care is best designed flexibly with the child/young person and regularly reviewed with patient and family.
• Educational assessment and provision is an important element of the childs management.

On occasions, families of child sufferers with more severe CFS/ME have been subject of child protection concerns. In cases of CFS/ME, evidence clearly suggestive of harm should be obtained before convening child protection procedures or initiating care procedure in a family court. Consideration should be given to obtaining a second opinion from an expert practitioner in the condition.

Professor Allen Hutchinson, Chairman of the CFS/ME Independent Working Group said:

CFS/ME is a complex illness which affects people of all ages. This report is an important step in the development of NHS care for people with this illness. We have achieved agreement on many aspects of care for people with CFS/ME, even though some differences of opinion remain over the best ways of managing the illness. The Reports recommendations propose a number of useful strategies for improving care for individuals and for improving NHS services.

The Chief Medical Officer, Sir Liam Donaldson, said:

The Working Group report confirms that CFS/ME is a debilitating and distressing condition affecting many people. The causes of CFS/ME are not fully understood. The Working Group report is a sound basis from which we can start to make improvements in the care and treatment of people with CFS/ME.

The Department of Health has asked the Medical Research Council to develop a broad strategy for advancing biomedical and health services research on CFS/ME. The MRC will appoint an independent scientific advisory committee for this purpose.

The Department of Health is also ensuring that the External Reference Groups who will be developing the NSFs for both childrens services and adults with long term conditions consider this report and its recommendations for improving treatment and care. 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.

Notes for Editors:

1. Established in 1998, the Working Group's terms of reference were to review management and practice in the field of CFS/ME with the aim of providing best practice guidance for professionals, patients and carers to improve the quality of care and treatment for people with CFS/ME.

2. As well as a main working group, a sub-group on children and a Reference Group with an ad-hoc advisory role was also set up. Membership of the groups was drawn from health professionals, voluntary organisations, carers and patients with a wide range of expertise and opinion.

3. The report will be available on the CMOs website and Chief Executives of Health Authorities, NHS Trusts and PCTs will be advised that the report has now been published. The address is: http://www.doh.gov.uk/cmo/publications.htm.

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 awarenesss and understanding that we hope will lead to improved diagnosis, management and treatment.

2. We acknowledge that the Working Goup 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% 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 guidedance 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 and expert Medical practioner 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 Government's commitment and recommendations for taking this forward.

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