Disclosure log 2296

Full details as to why the Welsh Assembly Government formally requested the National
Institute for Clinical Excellence to prepare a clinical and service guideline for Chronic Fatigue
Syndrome/Myalgic Encephalomyelitis
28 May 2008
Dear
Request for Information reference 3391 - Disclosure
I wrote to you on 20 May following your request for information. In your request you asked
for:
Full details as to why the Welsh Assembly Government formally requested (Feb 2004) the
National Institute for Clinical Excellence to prepare a clinical and service guideline for
CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis).
I am enclosing the information which you requested, in the form of a Statement of
Information that was published on the Assemblys Access to Information website in 2004,
following the Minister for Health and Social Services agreement to refer the topic to NICE.
The Statement sets out the reasoning behind the decision to refer the topic to NICE, and
should hopefully fully address your request.
Any information released under the Freedom of Information Act 2000 or Environmental
Information Regulations 2004 will be listed in the Assembly Governments Disclosure Log (at
www.information.wales.gov.uk).
If you believe that I have not followed the relevant laws, please contact me to request a first
stage review. If, after that, you are still not satisfied you may request a second stage review
by the Assembly Government. When dealing with any concerns, we will follow the Assembly
Governments Code of Practice on Complaints which is available on the Internet at
www.wales.gov.uk or by post.
You also have the right to complain to the Information Commissioner. Normally, however,
you should pursue the matter through our internal procedure before you complain to the
Information Commissioner. The Information Commissioner can be contacted at:
Information Commissioners Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF
Tel: 01625 545 745
Fax: 01625 524 510
Email: enquiries@ico.gsi.gov.uk
Also, if you think that there has been maladministration in dealing with your request then you

may make a complaint to the Public Services Ombudsman for Wales who can be contacted
at:
Public Services Ombudsman for Wales
Ffordd yr Hen Gae
Pencoed
Bridgend
CF35 5LJ
Tel: 0845 601 0987
Yours sincerely
Dominic Worsey
Healthcare Excellence Branch
Quality, Standards and Safety Improvement Division
Department for Health and Social Services
STATEMENT OF INFORMATION (originally published in 2004)
Referral to the National Institute for Clinical Excellence (NICE) of a guideline on the
assessment, diagnosis, management and care of adults and children with chronic fatigue
syndrome/myalgic encephalomyelitis (CFS/ME)
NICE was set up by Statutory Instrument (1999 No. 220) The National Institute for Clinical
Excellence (Establishment and Constitution) Order 1999, in accordance with powers
contained in the National Health Service Act 1977. The Institute is required, by Direction
issued in accordance with this Act, to appraise the clinical benefits and costs of health care
interventions notified to it by the Secretary of State for Health and the National Assembly for
Wales.
The Minister's agreement is sought for referral to NICE of a guideline on the assessment,
diagnosis, management and care of adults and children with CFS/ME.
The remit suggested by the Department of Health in England is:
"To prepare for the NHS in England and Wales, guidance on the assessment, diagnosis,
management of adjustment and coping, symptom management, and the use of rehabilitation
strategies geared towards optimising functioning and achieving greater independence for
adults and children with CFS/ME."
There are clear links with the National Service Framework (NSF) programme. The guideline
will help inform implementation of the Childrens NSF. Currently it is intended that treatment
and care for children with CFS/ME will be highlighted as an exemplar.
The ability of professionals to guide the patient effectively through the illness appears to be
undermined by uncertainties over the aetiology and pathogenesis, prevalence, natural
history and prognosis. Furthermore, there is widespread confusion and uncertainty among
most clinicians about the content and style of the existing rehabilitation strategies that can be
applied in clinical practise, and applicability of generic symptom management approaches.
There is urgent need for a consensus-based guideline to inform General Practitioners and
secondary care physicians on management and treatment

In its response to the CFS/ME Working Group report, the Department of Health in England
said 'A referral to the National Institute for Clinical Excellence (NICE) to provide guidance on
management and treatment will be considered in due course'. Both Professor Anthony
Pinching, the Chairman of the CFS/ME Service Implementation Steering Group, and Dr
Timothy Chambers the former chairman of the childrens group, support the proposal.
Officials at the Department of Health in England consider that the development of a NICE
clinical guideline is an integral part of plans to improve treatment and care for patients. It will
underpin the training of professionals and support improvements of care to sufferers. The
NICE guideline is one of the three strategies for taking forward improved services for
CFS/ME in England. The other two are (a) research, through the MRC Panel; and (b) service
development which is now being taken forward by the CFS/ME Service Investment Steering
Group.
Ministerial agreement from the Department of Health and National Assembly for Wales is
required before any topic can be referred to NICE for the development of a clinical guideline.
The Minister is therefore being asked to agree to the proposed remit being referred to NICE.