1. Introduction
Chronic fatigue syndrome (CFS/ME) is a genuine illness and imposes a substantial
burden on the health of the UK population. Improvement of health and social carefor people affected by the condition is an urgent challenge.e Working Group on
CFS/ME.
This report proposes ways in which clinicians and the NHS might respond to that challenge.
Widespread uncertainty surrounds this condition, so the Working Group does not claim topresent a definitive answer. Rather, we have aimed to bridge gaps in understanding ofCFS/ME and between concerned parties - by highlighting areas where general agreement
exists or by delineating controversy where possible - and to detail the many positive
suggestions and models we have encountered. Where research evidence exists we havebeen guided by it.
During the course of preparing the report, the Working Group has continued to beconcerned at the widespread controversy surrounding the existence and nature of CFS/ME.
Patients, their carers, and healthcare professionals encounter different levels and varying
manifestations of disbelief and prejudice against people affected by the condition. The
disbelief and controversy over CFS/ME that exists within the professions has done nothing
to dispel public disbelief in the existence of such a seemingly varied and inconstant illness.
Our aim has been to hear, understand, and address the disbelief and controversy wherepossible. During this process, the Working Group agreed that existing controversy cannot
and should not be used as an excuse for inaction or unsuitable practice. Instead, weadopted a view that is considered appropriate for many other conditions: that every
patient's experience is unique and their illness must be considered and treated flexibly in
its own right.

1.1 Background to the report
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, andaffects a very large number of people. It poses a significant challenge to the medicalprofession."
At the briefing, he announced establishment of a Working Group on CFS/ME.

1.4.3 Prognosis

Although current research evidence on prognosis indicates that only a small minority ofpatients recover to previous levels of health and functioning, this finding must be
tempered by the likelihood of selection bias in studies towards inclusion of those withpoorer prognosis. The likelihood is that most patients will show some degree ofimprovement over time, especially with treatment. A substantial number of patients will
pursue a fluctuating course with periods of relative remission and relapse, while asignificant minority become severely and perhaps permanently disabled. Graduallyprogressive deterioration is unusual in CFS/ME and should always prompt a further
detailed clinical review to ensure that there is no other explanation that has been missed.
However, progressive deterioration can occur in some patients with CFS/ME; the existenceof such patients, many of whom are among the more severely affected, must berecognised. Many need special attention in the delivery of care and the provision ofsupport.
As with epidemiological studies of the incidence and prevalence of CFS/ME, knowledge ofthe prognosis of the illness is limited both by a lack of agreement on definitions (with theconsequence that different researchers may not be always studying the same condition)and by a shortage of good studies (see Annex 2).
However, researchers appear agreed on three points:

Prognosis is extremely variable. Although many patients have a fluctuating coursewith some setbacks, most will improve to some degree. However, health andfunctioning rarely return completely to the individual's previous healthy levels; mostof those who feel recovered stabilise at a lower level of functioning than that before
their illness.

Of all the people in the community who fulfil criteria for CFS/ME, many experiencethe majority of their improvement relatively quickly - thus, the distribution ofduration of illness is uneven, with greater numbers having shorter than average
duration of disease.

In those that do not recover relatively quickly, the illness has a tendency to become
more prolonged and in a minority, the duration is very long.

Overall, there is wide variation in the duration of illness, with some people recovering inless than two years, while others remain ill after several decades. Those who have been
affected for several years seem less likely to recover; full recovery after symptoms persist
more than five years is rare. Irrespective of the statistics, each individual requires thenecessary assistance to maximise their chances of an early recovery and minimise theimpact of the illness.

2.3.1 People who are severely affected"Severely ill are severely overlooked - just ignored and invisible."
Estimates suggest that up to 25% of people with CFS/ME are so seriously affected thatthey are unable to perform most basic personal tasks and are confined to bed or spend themajority of the day in bed. Such patients feel particularly alone and isolated. The severity,complexity, and longevity of the illness are poorly understood.
"Severely affected are particularly vulnerable from lack of medical attention,understanding, and home attention."

2.3.1.1 Primary care
Views were expressed that when GPs were confronted with a patient whose illness iscomplex and does not improve with treatment then they can feel helpless, and may
effectively "withdraw to the sidelines" leaving the patient to feel totally alone.
"Dumped in the community - totally invisible."The lack of agreement over advice and management compounds the difficulties of theseverely affected. In general, this group is excluded from research, so they may not fulfil
criteria used to test evidence-based approaches. For example, many comment on theinappropriateness of extreme exercise regimens that have been studied in less adverselyaffected patients. Some report that they want to believe doctors and feel "frightened to
say no", or that they do not have the energy to disagree. Fears were also expressed over:being "branded" as a "difficult patient", losing benefits, letting people down, not trying,losing the love of the family, and being labelled as mentally ill.

3.4.3 Severity
Severity of any illness can be understood in several different dimensions. So for eachindividual, account must be taken of the way in which his or her symptoms, reduced levelsof physical and cognitive activity, and altered social functioning have an unwelcome
impact on normal life, goals, and expectations. Above all, each patient must be assessedon his or her own expression of the illness and actual functional level.
The Working Group is concerned that it is necessary to make these points for CFS/ME,
when such considerations are self-evident and part of usual clinical practice for otherdisorders that are better recognised. Appreciation and understanding are essential if theneeds of different patients are to be met effectively and appropriately, in medical andsocial care, education, and employment, as well as in attitudes of family, friends, andsociety.
The term 'severely affected' has been widely applied to patients whose physical disability
is most severe, leading to serious restrictions in mobility and functioning. In many, theserestrictions are accompanied by other markers of severity, such as cognitive impairment
or prolonged course. This degree of physical restriction, especially if prolonged, has
profound effects on personal and social functioning, which in turn substantially affects thepatient's ability to access health and social services, and has an impact on the patient'scarers.
A recent description has suggested four categories of severity in CFS/ME:(3) although caremust be taken not to diminish inadvertently the experience of any patient by descriptors ofseverity.
Mild - Are mobile and can care for themselves and can do light domestic tasks withdifficulty. The majority will still be working. However, in order to remain in work, they will
have stopped all leisure and social pursuits, often taking days off. Most will use theweekend to rest in order to cope with the week.
Moderate - Have reduced mobility and are restricted in all activities of daily living, often
having peaks and troughs of ability, dependent on the degree of symptoms. They haveusually stopped work and require rest periods, often sleeping in the afternoon for one or
two hours. Sleep quality at night is generally poor and disturbed.
Severe - Will be able to carry out minimal daily tasks only, face washing, cleaning teeth,
have severe cognitive difficulties and be wheelchair dependent for mobility. These people
are often unable to leave the house except on rare occasions with severe prolonged
after-effect from effort."
Very severe - Will be unable to mobilise or carry out any daily tasks for themselves andare in bed for the majority of the time. These people are often unable to tolerate any noise,
and are generally extremely sensitive to light.
Indeed, there may be severe impact on people's lives even of less overtly severe CFS/ME,
as the descriptions offered by Cox and Findley (3) for mild and moderate CFS/ME suggest.
Such patients may suffer most impact through the discrepancy between what they wereable to achieve previously and what they can now do. Even less prolonged illness,
whatever the severity, can have very substantial personal and social impact, mainly
intrusions on the individual, relationships, work, and finances. Self-confidence andself-esteem are severely eroded in many cases.

Attempts by individuals to maintain activity close to a previous level of functioning can be
unrealistic and unsustainable. This realisation can cause additional distress, compoundedby the responses of those around the patient to the confusing signals they receive, and theunpredictability of the patient's levels of functioning.

3.4.3.1 People with severe illness
The descriptions above give an indication of the functional impact of severe disease and anindication of consequent needs. Current provision of services falls well below what isneeded for the vast majority of severely and very severely affected patients.
Special difficulties arise from being physically unable to access the many services that now
require patients to be ambulant, or to travel to the point of service assessment or delivery.
Immobility and isolation can easily lead to what some people describe as 'invisibility'. The
lack of simple technical solutions and the great difficulty that some professionals andothers have in facing the uncomfortable reality of the illness, especially in a severe form,
can compound the problem.
The duration of illness and disability due to CFS/ME can itself become part of the severityof the disease's impact, for any duration of illness can be intrusive and cause substantial
problems. Severe illness that continues over many years with no sense of improvement
has a profound cumulative personal and social impact. A minority of those with CFS/ME
remain permanently severely disabled and dependent on others. Yet, even if we lack easysolutions, professionals can still support, care, and provide for many patients' needs byreaching such patients in their homes, maintaining contact, and continually exploring
potential options. Those who are most severely affected need acknowledgement,
encouragement, and support to remain optimistic.

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