ME/CFIDS/CFS/FM Unhelpful Counsel Cont.
continued from Jan31

Unhelpful Counsel

The report - background and content

1.1 Background to the report
In 1998, after much debate, the Working Group on CFS/ME was established to "review the practical care and support for patients, carers, and health care professionals alike." Its brief was 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." In particular, the Group aimed to:
develop good clinical practice guidance on the healthcare management of CFS/ME for NHS professionals, using best available evidence,
make recommendations for further research into the care and treatment of people with CFS/ME,
identify areas which might require further work, and make recommendations to CMO.

Evidence and opinions were sought from many quarters, and a systematic search of the international evidence on CFS/ME commissioned. Unlike previous reports, the focus was "to provide advice on clinical management," in accord with the NHS Plan of July 2000 which strives to increase the involvement of public and patients by promoting self-management, improved information to and communication with patients, and greater choice of healthcare options to support the concept of individualised care.

The Working Group consisted of three groups: the Key Group which was responsible for surveying the evidence, developing the main report, and agreeing the final recommendations to the CMO; the Children's and Young People's Group; and the Reference Group which had an ad-hoc advisory/consultative role, and whose members had a wide range of expertise and opinion.

1.2 Content of the report
The report, published in January 2002, consists of six chapters, of which chapters 2 to 5 form the policy-making information. The original "key message" summary of each chapter are given in the boxes below.

Chapter 2 of the report summarises the patient evidence presented to the Working Group. It covers the general themes of recognition, diagnosis, acknowledgement, and acceptance of CFS/ME by the public and healthcare professionals. It reports patient concerns about the need for information, and the need for professional education about the condition among healthcare professionals, both in the primary and further care sectors. It discusses the special needs and problems of people who are severely affected, of children and young people, and of carers:


Chapter 2 - Evidence from patients: Key messages


Patients' voices are not being listened to and understood.
People affected by CFS/ME indicated improvements needed in three main areas: recognition, diagnosis, acceptance, and acknowledgement; healthcare service provision; care of groups with special circumstances.
Patients reported the need for more healthcare professionals who know about and understand CFS/ME. Public awareness campaigns, professional education, and information for patients and carers are accorded high priority.
Experiences of primary care are polarised. Positive experiences are characterised by: willingness of clinicians to treat the patient as an equal, supportive attitudes, belief in the patient's experiences, and early recognition and diagnosis.
Experiences of further care are predominantly negative. Needs identified include access to specialists and respite-care services.
Those severely affected by CFS/ME (up to 25% of patients) feel "severely overlooked" by services. They experience isolation, lack of understanding, and particular barriers to accessing all forms of care.
Children and young people are profoundly affected by public and professional uncertainties over the illness. Young people also suffer from impact on their families and from lack of support and expertise within the education system.
Individuals with CFS/ME from disadvantaged class or ethnic groups face special difficulties, yet they are under-represented in research.
Carers, particularly of young people, need more recognition, support, and respite.

"Patients are not being listened to or understood. Those
severely affected feel isolated and overlooked."

Chapter 3 describes the nature and impact of CFS/ME. It outlines the decision to use the term `CFS/ME' in the report, and summarises what is known about the aetiology, pathogenesis, and disease associations; predisposing factors; triggers; maintaining factors; and possible disease mechanisms. It discusses the spectrum of illness, subgroups, symptom profiles, severity, and the socio-economic impact of the illness:


Chapter 3 - Nature and impact of CFS/ME: Key messages


CFS/ME is a relatively common condition of adults and children that is clinically heterogeneous and lacks specific disease markers, but is clinically recognisable.
The broader impact of the disease, even in its milder forms, can be extensive; people who are severely affected and/or with long-standing disease are profoundly compromised, and improvement of their care is an urgent challenge.
The aetiology (cause) of CFS/ME is unclear, although several predisposing factors, disease triggers, and maintaining factors have been identified.
The pathogenesis (disease process) underlying CFS/ME is also unclear. Research has demonstrated immune, endocrine, musculoskeletal, and neurological abnormalities, which could be either part of the primary disease process or secondary consequences.
One highly heterogeneous disease might exist that encompasses CFS/ME, or several related pathophysiological entities may exist; these distinct hypotheses should be studied.
Current evidence does not allow complete distinction between CFS and ME, or useful delineation of subgroups. Every patient's experience is unique, and the illness should be managed individually and flexibly.

Chapter 4 puts forward suggestions for the management of CFS/ME, based on recognition, acknowledgement, and acceptance of the condition by healthcare professionals. It suggests approaches to patient management, diagnosis, and clinical evaluation. It stresses the need for information and support, and for systems to be put in place to facilitate ongoing care. Controversially, on the basis of the York Review and clinical experience, it identifies graded exercise, cognitive behavioural therapy, and pacing as interventions that might be useful for patients. It also discusses models for improved service provision:


Chapter 4 - Management of CFS/ME: Key messages


Initial professional responses to CFS/ME can have major impact on the patient and carers. 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. Symptoms are diverse, but increased activity frequently worsens fatigue, malaise, and other symptoms with a characteristically delayed impact.
All patients need appropriate clinical evaluation and follow-up, ideally by a multidisciplinary team. Care is ideally delivered according to an agreed flexible management plan, tailored from a generically applicable range of options.
Therapeutic strategies that can enable improvement include graded exercise/activity programmes, cognitive behaviour therapy and pacing; intrusive symptoms and co-morbid conditions may also require specific management.
The overall aim of management must be to optimise all aspects of care that could contribute to any natural recovery process. Management strategies need regular review to guide their application and adaptation to the individual.
Education and support, plus measures to tackle the broader impact of the disease, need to be initiated as early as practicable. Much support is provided by the voluntary sector. Patients can be empowered to act as partners in care.


Review of the evidence highlights the lack of good quality research to support effectiveness of various therapies. Patient responses suggest that no approach is universally beneficial and that all
can cause harm if applied incorrectly.
The goal of rehabilitation or re-enablement will often be adjustment to the illness; improvement is possible with treatment in the majority of people.

"Early recognition with an authoritative, positive diagnosis is key."

Chapter 5 focuses on the nature and impact of CFS/ME in children and young people, its clinical profile, social impact, and management. It also discusses the importance of education and child protection, and the impact on family/carers:


Chapter 5 - Children and young people: Key messages


CFS/ME represents a substantial problem in the young - "children do get it," though many recover, even after prolonged illness.
Important differences exist between children and adults in the nature and impact of the disease and its management.
The condition potentially threatens physical, emotional, and intellectual development of children and young people, and can disrupt education, and social and family life at a particularly vulnerable time of life.
Clinicians face additional difficulties in supporting and managing the younger patients and their families and parents/carers.
An especially prompt and authoritative diagnosis is needed in the young, while the possibility of other illnesses and complications must also remain in mind.
Ideal management is patient-centred, community-based, multidisciplinary, and coordinated, with regular follow-up. Community paediatric services need to be available for most children, and for all with prolonged school absence.
The clinician who coordinates care needs to consider educational needs and impact on the family and parents/carers as early as practicable.
Care is best delivered according to a specific, flexible, patient-focused treatment plan, designed and reviewed regularly with patient and family.
Future services need to be developed around the needs of the child or young person and their family.

Chapter 6 presents the recommendations of the Working Group, dealing with recognition and definition of the illness, treatment and care, health service planning, education and awareness, and research:


Chapter 6 - Recommendations of the Working Group


CFS/ME is a relatively common clinical condition, which can cause profound, often prolonged, illness and disability, and can have a very substantial impact on the individual and the family. It affects all age groups, including children.

The Working Group has encountered extensive evidence on the extent of distress and disability that this condition causes to patients, carers, and families. It has examined the evidence on the effectiveness of interventions used in the management of this condition. The Working Group is concerned about several issues. Patients and carers often encounter a lack of understanding from healthcare professionals. This lack seems to be associated with inadequate awareness and understanding of the illness among many health professionals and in the wider public. Many patients complain of the difficulty of obtaining a diagnosis in a timely manner. There is evidence of under-provision of treatment and care, with patchy and inconsistent service delivery and planning across the country.

Finally, there is a paucity of good research evidence and very little research investment for a serious clinical problem that in likelihood has a pervasive impact on the individual and the community. Insufficient attention has been paid to differential outcomes and treatment responses in children and young adults, the severely affected, cultural, ethnic and social class groupings. The Working Group has identified measures that should be taken with some urgency to address the current situation."

6.1 Recognition and definition of the illness
The NHS and healthcare professionals should recognise CFS/ME as a chronic illness that, despite uncertain aetiology, can affect people of all ages to varying degrees, and in many cases substantially.
In view of current dissatisfaction among some groups over the nomenclature applied to this illness, we recommend that the terminology should be reviewed, in concert with other international work on this topic.

6.2 Treatment and care
Patients of all ages with CFS/ME must receive care and treatment commensurate with their health needs and the disability resulting from the illness.
Healthcare professionals should have sufficient awareness, understanding, and knowledge of the illness to enable them to recognise, assess, manage, and support the patient with CFS/ME. Healthcare workers who feel they need extra skills should seek and receive help from those experienced in this area.
General Practitioners should usually be able to manage most cases in the community setting, but must be able to refer patients for specialist opinion and advice where appropriate (e.g. because of complexity in diagnosis and treatment).
CFS/ME of any severity in a child or young person - defined as of school age - is best coordinated by an appropriate specialist - usually a paediatrician or sometimes a child psychiatrist - in concert with the GP and a paediatric or CAMHS multidisciplinary team.
Sufficient tertiary level specialists in CFS/ME should be available to advise and support colleagues in primary and secondary care.
Management should be undertaken as a partnership with the patient, should be adapted to their needs and circumstances, and should be applied flexibly in the light of their clinical course.
The support of the patient with CFS/ME and the management of the illness should usually extend to the patient's carers and family.
Clinicians must give appropriate and clear advice, based on best national guidance, on the nature and impact of the illness to those involved in providing or assessing the patient's employment, education (primary, secondary, tertiary, and adult), social care, housing, benefits, insurance, and pensions.

6.3 Health service planning
Service networks should be established to support patients in the primary care and community setting, to access when necessary the skills, experience, and resources of secondary and tertiary centres, incorporating the principles of stepped care. Services should be configured so that individual professionals and aspects of the service can meet individual needs, particularly in the transition from childhood to adult life.
Health service commissioning through primary care organisations, supported by health authorities
or wider consortia, must ensure that local provision for these patients is explicitly planned and properly resourced, and that health professionals are aware of the structure and locale of provision. Health commissioners should be requested to take immediate steps to identify the current level of service provision for CFS/ME patients within their locality.
Each Strategic Health Authority should make provision for secondary and tertiary care for people with CFS/ME, based on an estimated annual prevalence rate of approximately 4,000 cases per million population in the absence of more refined data.
People who are so severely affected that their disability renders them housebound or bed-bound have particular constraints in regard to their access to care. These specific needs must be met through appropriate domiciliary services.
The NHS should make use of the wide range of support and resources available through partnership arrangements with voluntary agencies, enabling suitable self-management by the patient.

6.4 Education and awareness
The education and training of doctors, nurses, and other healthcare professionals should include CFS/ME, as an example of the wider impact of chronic illness on the patient, on carers and family, and on many aspects of society.
Healthcare professionals, especially in primary care and medical specialities, should receive postgraduate education and training so that they can contribute appropriately and effectively to the
management of patients with CFS/ME of all ages.
GPs and medical specialists should consider CFS/ME as a differential diagnosis in appropriate patients, and should at least be able to offer initial basic guidance after diagnosing this condition (Annexes 6 and 7).
Awareness and understanding of the illness needs to be increased among the general public, and through schools, the media, employers, agencies, and government departments.

6.5 Research
A programme of research on all aspects of CFS/ME is required. Government investment in research on CFS/ME should encompass health-services research, epidemiology, behavioural and social science, clinical research and trials, and basic science. In particular, research is urgently needed to:
Elucidate the aetiology and pathogenesis of CFS/ME,
Clarify its epidemiology and natural history,
Characterise its spectrum and/or subgroups (including age-related subgroups),
Assess a wide range of potential therapeutic interventions including symptom control measures,
Define appropriate outcome measures for clinical and research purposes, and
Investigate the effectiveness and cost-effectiveness of different models of care.

The research programme should include a mix of commissioned or directed research alongside sufficient resource allocation for investigator-generated studies on the condition.

The report also contains seven annexes containing evidence presented to the committee. These comprise:
1. Epidemiology
2. Prognosis
3. Patient evidence
4. General concepts and philosophy of disease
5. Management of CFS/ME - research evidence
6. Management of CFS/ME - report summary
7. Management of CFS/ME - children and young persons' summary.

Annexes 1 to 5 have not been published but are available at www.doh.gov.uk/cmo/publications.htm. Annexes 6 and 7 have been published as a separate document.

 MERGE is the Myalgic Encephalomyelitis Research Group for Education and Support

Cont. tomorrow Feb2