A Report of the CFS/ME Working Group
Report to the Chief Medical Officer of an Independent Working Group
Summary
In 1998 the Working Group on CFS/ME set out to
consider how the NHS might best provide care for people of all ages
who have this complex illness.
We have approached the work in two stages.
First, to listen to, and to try to understand, the patient and carer
perspective on the very wide range of issues surrounding the
management of the illness. Unsurprisingly, when so little is known
about the cause of CFS/ME, there are concerns from patients and their
representatives, and from a broad range of clinicians, over the way
the illness is managed. These concerns on management apply to the NHS,
to other government Departments and to the private sector. In
particular, patients and health professionals involved in the care of
CFS/ME find much disbelief about the nature of the illness and of its
impact. Perhaps as a result, in many areas of the country there
appears to be a lack of appropriate health care facilities.
In the second stage of our work, in which
contributors from the Working Group were assisted by a Reference Group
and many other commentators, we sought to bring together knowledge on
CFS/ME to support initiatives to improve care for patients. This has
been an intricate process, drawing on research evidence, the
experience of patients and diverse clinical opinion. We were assisted
in this endeavour by a systematic review of the evidence which was
commissioned by the Department of Health. Although it was not always
possible to resolve some of the differences of view, for perspectives
and opinions on some issues ranged widely across the contributors in
the Working Group, we have been able to bring together a Report which
meets our brief of advising on ways of improving care for children,
young people and adults with CFS/ME.
This is an illness that most clinicians will
encounter, although to varying extents. We found that it can, and
should, be approached and managed clinically like any other chronic
illness. That is, it can be managed by drawing on evidence and
knowledge of what works best for a particular group of patients, and
by using the usual generic clinical skills for assessment, therapy and
care, adapted to the particulars of the condition and of the
individual patient.
The production of this report has been a
complex and challenging task and considerable effort has been required
to bring this Report together. Many people have given their time to
this enterprise and I wish to record my thanks to all of them. I see
this Report as one unique step in a process of improving care for
people with CFS/ME. There is much to do. But I hope this Report may
act as a means of assisting health care professionals and public and
private services to begin that process.
ALLEN HUTCHINSON
Chairman of the Working Group
For more on the report, including
organization and media comments, click
here.
