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 announced the establishment of a Working Group on what was then termed CFS/ME
I recognise chronic fatigue syndrome (sic) is a real entity. It is distressing, debilitating, and affects a very large number of people. It poses a significant challenge to the medical profession.
On the 4 November 1998, Sir Kenneth’s successor, Professor Liam Donaldson, announced the membership of the CFS/ME Working Group and in the Press Release he stated that
This initiative will provide us with a real opportunity to review the practical care and support for patients, carers, and healthcare professionals alike.
The resultant publication – ‘A Report of the CFS/ME Working Group: Report to the Chief Medical Officer of an Independent Working Group’ was published in Jan/Feb 2002 and was both thorough and wide-ranging. After an initial exploratory period in which the principal aspects of the brief were examined, evidence and opinions sought from many quarters, and a systematic search of the international evidence on CFS/ME commissioned, the brief of the Working Group’s report was confirmed:
- 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 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.
The scope included aspects of the importance of the patient vouice, professional education, the severely affected, youny people and ME, disease amnagement, diagnostic criteria, research and many other areas. with Key Messages and Receommendations, it was a platform to be build upon but, in reality, it wdid not provke fundamental change but shows that the issues surrounding ME/CFS have been identified, discussed and recognised for decades. Regrettably, little progress was made and “to assess the progress of scientific research on ME, since the publication of the Chief Medical Officer’s Working Group Report into CFS/ME in 2002
“, the Gibson Parliamentary Inquiry took place.
2002 Recommendations
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 egrees, 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.
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 co-ordinated 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.
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 house-bound 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.
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.
- Awareness and understanding of the illness needs to be increased among the general public, and through schools, the media, employers, agencies, and government departments.
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.
