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Unhelpful Counsel?

 

MERGE’s response to the Chief Medical Officer’s Working Group report on CFS/ME

 

April 2002

 

“Brutalised by their reception in doctors’ examining rooms, they ceased consulting doctors, preferring instead to wait out their disease away from the medical profession’s unhelpful counsel.”

Hillary Johnson, Osler’s Web

 

MERGE – ME Research Group for Education and Support

The Gateway, South Methven St, Perth PH1 5PP, Scotland, UK

01738 451234: merge@pkavs.org.uk

Charity No. 1080201

 

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Preface by The Countess of Mar

This document has been prepared by MERGE in response to the great interest awakened by the Working Group’s report to the Chief Medical Officer on CFS/ME in January 2002. The CMO’s report has been widely seen as a positive step for ME patients in terms of the recognition of the illness and the need for the provision of medical and social care. Yet, there are several aspects of the report which have been of concern, not only for ME patients and their carers, but also for independent professionals with an interest in social and medical policy. Following several representations and after careful consideration, a decision was made by MERGE to prepare a response highlighting these concerns while pointing out the positive aspects of the report. At the back of our minds was the Joint Royal Colleges Report of 1996, a controversial document which went formally unchallenged though criticism was voiced in several quarters at the time. Given this example, it is important for MERGE to put on record in a formal document - if only for historical reasons - several of the key issues surrounding the deliberations and production of the Working Group’s report.

 

As patron of MERGE, it is a pleasure for me to endorse this analysis of the report on CFS/ME to the

CMO. I hope that it gives voice and some hope to many ME patients, some of whom have mixed feelings about the recommendations in the report and others who are frankly antagonistic to the underlying psychological philosophy that coloured the deliberations of the Working Group.

 

MERGE’s report formed a necessary background to my statement on CFS/ME in the House of Lords on Tuesday 16th April 2002. In this statement, I pointed out that despite the fine aspirations in the report, its effect might be to “compound inaction, ignorance and even denial: inaction in not investigating the patient’s illness or not providing any treatment - management is not the same as treatment; ignorance by promoting inappropriate and possibly harmful interventions; and denial of the true nature of ME.” A contributor to the ensuing debate pointed out that in the three months since publication there “appears to have been a deafening silence... I remind the Minister that that work was described as “urgent” by the Working Group.”

 

I sincerely hope that MERGE’s analysis will help to reawaken interest in the research and treatment of this disabling illness, and that the professional and wider communities will at last come to understand just how disabling this illness is. Whilst treatment and cure might still be distant dreams for ME patients, I hope there will be a rapid sea change in the public perception of ME, and that there will be encouragement and support rather than scorn and derision for ME sufferers.

 

 

Contents

 

Executive Summary

1. The report - background and content

1.1 Background to the report

1.2 Content of the report

Chapter 2 - Evidence from patients: Key messages

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

Chapter 4 - Management of CFS/ME: Key messages

Chapter 5 - Children and young people: Key messages

Chapter 6 - Recommendations of the Working Group

2. Positive aspects of the report

2.1 Recognition of CFS/ME as an illness

2.2 Recognition that CFS/ME can be clinically diagnosed

2.3 Importance of a positive diagnosis

2.4 Need for action

2.5 Estimation of prevalence and service need

2.6 Suggestions for best practice

2.7 Instruction to clinicians on patient management

2.8 Description of CFS/ME in children

2.9 Recommendations to healthcare professionals about benefit provision

2.10 Appropriate attitude for healthcare professionals

2.11 Importance of patient consent for management strategies

2.12 Needs of the severest suffers

2.13 Voicing of patient and carer concerns

2.14 Summary

3. Limitations of the report

3.1 Constrained remit

3.2 Unbalanced composition of the Working Group

3.3 Problem of diagnosis and use of the composite term CFS/ME

3.4 Choice and interpretation of best management strategies

3.4.1 Cognitive behavioural therapy

3.4.2 Graded exercise therapy

3.4.3 Pacing

3.4.4 Conclusions about the choice of management strategies

3.5 Failure to highlight data on the most severely ill patients

3.6 Undue prominence given to the ‘biopsychosocial’ model of the illness

3.7 Downgrading of relevant research findings

3.8 Inadequate coverage of social care and welfare issues

3.9 Words are not action - will anything actually change?

End piece - Patient v voices

References

Postscript by MERGE

Appendix

 

Executive Summary

The report of the Chief Medical Officer’s Working Group on CFS/ME of January 2002 is an advance on the widely-criticised Joint Royal Colleges report on CFS (1996). It gives an authoritative statement that CFS/ME is a genuine illness which imposes a substantial burden on the health of the UK population, and stresses that improvement of health and social care for people affected by the condition is an urgent challenge. Importantly, it states that CFS/ME can be clinically recognised for treatment purposes; lists the initial battery of tests that should be performed; and is clear that inaction by healthcare professionals due to ignorance or denial of the condition is not excusable. These, and many more, positive aspects of the report represent progress in terms of recognition of the illness and its consequences. However, for a variety of reasons, the report is inadequate.

 

Most importantly, the narrowness of the remit, concerned primarily with providing best practice guidance on the healthcare management of the illness, has ensured that the focus is on containment and coping, rather than on solving the clinical conundrum, namely, what actually causes the illness and what steps can be taken to elucidate the cause. The constraint of the remit has several important consequences, some of which are discussed below.

 

It has permitted the Working Group to side-step the central issue which energises every discussion about CFS/ME. This concerns the diagnostic construct ‘CFS’ which most probably includes heterogeneous patient groups (one of them with classically-defined ME), limiting the generalisability of any specific management strategy or therapeutic intervention. The question, “what’s in a name?”, has particular poignancy in the case of this illness: one increasingly plausible answer is “everything” since de facto misdiagnosis not only complicates the interpretation of clinical trial evidence, but obscures treatment options and, in the long run, influences management and practice for the worse. Given that there is a growing number of experts who consider that there is a strong case for unpacking the term ‘CFS’ and reclassifying and renaming in accordance with more specific clinical criteria, a opportunity for the Working Group to seriously address this issue has been lost.

 

As the Working Group was concerned with therapeutic management, it sought evidence from a systematic review of forty-four randomised clinical trials on a range of clinical interventions. Two clinical “therapeutic interventions” were identified, cognitive behavioural therapy and graded exercise therapy. By conventional standards of literature reviewing, formal evidence for the use of either in a general patient population is rudimentary, a fact indicated by the authors of the original review. The specific efficacy of neither is convincingly supported by the systematic review evidence, and nor is the pragmatic efficacy supported by survey reports from CFS/ME patients. As regards cognitive behavioural therapy, five interpretable trials were identified (three “positive” and two “negative”), a less than conclusive evidence base for an intervention which is also non-curative, expensive, beyond the resources of Health Authorities to fund given the scale of the problem, and has been found helpful by only a small minority of patients surveyed by patient organisations. For graded exercise therapy, only three positive clinical trials were identified, none with a fully comparable control group and all consisting of patients classified by the Oxford criteria which does not diagnose ‘ME’ or ‘CFS (1994)’ exclusively. Again, the true usefulness of this therapy to the general population of patients is unclear given that the effectiveness of such motivational interventions is by no means established; that deconditioning may not, in fact, be an important factor limiting the activities of many CFS/ME patients; and that around half of patients surveyed indicated that graded exercise therapy actually worsened their condition. The third recommended intervention, pacing, is intuitively sensible but hardly warrants the status of a separate therapy within a healthcare management program.

 

Despite part of the remit “to make recommendations for further research,” the Working Group has dealt with the research findings in 639 words out of a total of some 34,600 in the main report. A large body of research literature on CFS/ME exists, however, and numerous biological abnormalities have been reported, although the aetiology of the illness remains elusive. By systematically assessing the significance of these, the Working Group may have been able to recommend a specific direction for future research. Instead, the message presented to the media, the public, and opinion formers is that the best that can be done is to manage symptoms, most prominently with psychological strategies. Interestingly, given the volume of published research evidence on pathophysiological mechanisms, the range of clinical signs and symptoms exhibited by CFS/ME patients, and a large body of professional opinion supporting a ‘biomedical’ model of the illness, it seems negligent that clinical opinion on the Working Group was proportionately over-represented by professionals who tend to subscribe to the use of biopsychosocial interventions for CFS/ME. Since four of their number resigned from the Key Group shortly before publication, after several years of participation, on the grounds that the report paid too little attention to biopsychosocial aspects of the illness, a question is raised about the role of the initial composition of the Working Group in colouring the final report.

 

At several points, the report mentions the problems of the most severely-ill patients. Yet, a database of information collected and analysed on behalf of severely-ill sufferers by The 25% ME Group, presented to the Working Group, was not used to full advantage in the final report, though other patient data was produced. MERGE’s summary of this data shows that 25% of these patients described themselves as bedridden, and 57% had been either housebound or bedridden for more than six years, illustrating in numbers rather than words that morbidity in CFS/ME can be substantial, despite the opinion of many healthcare professionals to the contrary. The management strategies recommended by the Working Group are inappropriate for this group of sufferers whose care remains a neglected challenge.

 

As regards social care, the Working Group set out to consider how the NHS might best provide care for sufferers. Yet, the NHS is only one agency among many providing care, and the responsibilities of other agencies involved in both care planning and direct service provision could have been usefully identified. Overall, the comforting statements from the Working Group about the services CFS/ME sufferers should receive in the community are little more than aspirations: without the full support and practical backing of local social work departments, sufferers will struggle to see their needs met either fully or appropriately.

 

Importantly, the report does not describe how or when change is to occur. The Working Party had no executive power and brought no additional funding to stimulate change. Even in its advisory role, it does not evaluate the cost implications of its recommendations, call for directives to be issued to the various health agencies or professional bodies, or propose any mechanism for checking that changes will be made. Crucially, it gives no indication that the illness will be looked at again, in the medium to long term, to assess whether real, meaningful change has come about.

 

In summary, while the Working Group’s report may go some way towards improving recognition of the illness, MERGE considers that it has avoided serious consideration of the important issues surrounding the diagnosis and treatment of ME/CFS; that it has given undue emphasis to management strategies of limited applicability; that practical recommendations for social care provision are lacking; and that, consequently, an opportunity to effect real change has been lost.

 

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s         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:

s          develop good clinical practice guidance on the healthcare management of CFS/ME for NHS professionals, using best available evidence,

s          make recommendations for further research into the care and treatment of people with CFS/ME,

s          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

 

s          Patients’ voices are not being listened to and understood.

s          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.

s          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.

s          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.

s          Experiences of further care are predominantly negative. Needs identified include access to specialists and respite-care services.

s          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.

s          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.

s          Individuals with CFS/ME from disadvantaged class or ethnic groups face special difficulties, yet they are under-represented in research.

s          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

s          CFS/ME is a relatively common condition of adults and children that is clinically heterogeneous and lacks specific disease markers, but is clinically recognisable.

s          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.

s          The aetiology (cause) of CFS/ME is unclear, although several predisposing factors, disease triggers, and maintaining factors have been identified.

s          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.

s          One highly heterogeneous disease might exist that encompasses CFS/ME, or several related pathophysiological entities may exist; these distinct hypotheses should be studied.

s          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

s          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.

s          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.

s          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.

s          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.

s          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.

s          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.

 

 

s          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

s          can cause harm if applied incorrectly.

s          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

s          CFS/ME represents a substantial problem in the young - “children do get it,” though many recover, even after prolonged illness.

s          Important differences exist between children and adults in the nature and impact of the disease and its management.

s          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.

s          Clinicians face additional difficulties in supporting and managing the younger patients and their families and parents/carers.

s          An especially prompt and authoritative diagnosis is needed in the young, while the possibility of other illnesses and complications must also remain in mind.

s          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.

s          The clinician who coordinates care needs to consider educational needs and impact on the family and parents/carers as early as practicable.

s          Care is best delivered according to a specific, flexible, patient-focused treatment plan, designed and reviewed regularly with patient and family.

s          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

s          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.

s          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

s          Patients of all ages with CFS/ME must receive care and treatment commensurate with their health needs and the disability resulting from the illness.

s          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.

s          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).

s          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.

s          Sufficient tertiary level specialists in CFS/ME should be available to advise and support colleagues in primary and secondary care.

s          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.

s          The support of the patient with CFS/ME and the management of the illness should usually extend to the patient’s carers and family.

s          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

s          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.

s          Health service commissioning through primary care organisations, supported by health authorities

s          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.

s          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.

s          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.

s          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

s          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.

s          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

s          management of patients with CFS/ME of all ages.

s          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).

s          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:

s          Elucidate the aetiology and pathogenesis of CFS/ME,

s          Clarify its epidemiology and natural history,

s          Characterise its spectrum and/or subgroups (including age-related subgroups),

s          Assess a wide range of potential therapeutic interventions including symptom control measures,

s          Define appropriate outcome measures for clinical and research purposes, and

s          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.

 


 

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2. Positive aspects of the report

 

Since the publication of the heavily-criticised 1996 Joint Royal Colleges report on CFS, there has been a black hole in the professional and public recognition of the illness. The CMO report advances current thinking in several key aspects.

 

2.1 Recognition of CFS/ME as an illness

The report gives an authoritative statement that CFS/ME is a real illness which requires professional help, and has particular problems owing to the controversy which surrounds it. It consolidates the acceptance of the disorder previously expressed by the Departments of Health and

Social Security and by the BMA as long ago as 1988:

 

“CFS/ME is a genuine illness and imposes a substantial burden on the health of the UK population. Improvement of health and social care for people affected by the condition is an urgent challenge.” (1.0)

 

“Patients, their carers, and healthcare professionals encounter different levels and varying manifestations of disbelief and prejudice against people affected by the condition.” (1.0)

 

“CFS/ME is a genuine illness. It should cease

to be a waste bucket for heart-sink patients”

 

2.2 Recognition that CFS/ME can be clinically diagnosed

The report makes it clear that CFS/ME can be clinically recognised for management purposes, and lists in Annex 6 the clinical assessment investigations that should be performed. These include:

s          Full clinical history

s          Physical examination

s          Mental health evaluation

s          Sleep evaluation

s          Basic screening tests, which can involve

o         Full blood count

o         C-reactive protein (CRP) concentration

o         Blood biochemistry tests including concentrations of creatinine, urea, electrolytes, calcium, phosphate, glucose, liver enzymes, and markers of thyroid function

s          Simple urine analysis

s          Other tests determined by history or examination

 

The diagnosis is based on the characteristic pattern of symptoms, once alternative diagnoses are excluded.

 

“Although the disorder is clinically recognisable, CFS/ME assumes many different clinical forms and is highly variable in severity and duration, but lacks specific disease markers.”(3.0)

 

2.3 Importance of a positive diagnosis

The report stresses that CFS/ME should cease to be a waste bucket for ‘heart-sink’ patients.

 

“A diagnosis of CFS/ME relies on the presence of a set of characteristic symptoms together with the exclusion of alternative diagnoses.” (4.2.1.1)

 

“A positive diagnosis of CFS/ME is needed, rather than one of exclusion. Without a validated test for the illness, diagnosis is based on recognition of the typical symptom pattern together with exclusion of alternative conditions. Thus, a positive diagnosis can usually be made from clinical history, examination, and a few appropriate laboratory investigations, as in other chronic illnesses of uncertain nature.” (4.2.1)

 

2.4 Need for action

The clear emphasis on the need for health and social care provision in CFS/ME is perhaps the most important thrust of the report.

 

“Appropriate management and service provision for patients with CFS/ME and their carers are urgent priorities.” (4.0)

 

In the view of the report, ‘action’ includes further research, especially concerning the severely affected.

 

“We suggest that the prevalence and impact of severe disease, the pathways to chronicity and to becoming severely affected, and strategies that would benefit such individuals urgently need further study.” (4.4.1)

 

2.5 Estimation of prevalence and service need

Given the wide variation in estimates of prevalence – partly a function of differences in case definition – the report comes up with a sensible estimate:

 

“On the basis of a reasonable estimate of adult population prevalence of 0.4%, a general practice with a population of 10,000 patients is likely to have 30 to 40 patients with CFS/ME, about half of whom may need input from services. The proportion of the latter patients who are severely affected by the disease is thought to be up to 25%.” (4.5.1)

 

2.6 Suggestions for best practice

At present, there are no guidelines on what clinicians should do with CFS/ME patients. The report has attempted to fill this gap.

 

“The incremental development of a locally based service, including provision of domiciliary care for severely affected patients, would significantly improve care for all patients with CFS/ME, but especially for this most disadvantaged of patient groups. The general components of such a service are: medical care, support for adjustment and coping, facilities for energy/activity management, and nursing and personal care.” (4.5.2)

 

2.7 Instruction to clinicians on patient management

In contrast with sensational media reports about the benefits of cognitive behavioural therapy and graded exercise, the report is clear about the limitations of current management strategies:

 

“No management approach to CFS/ME has been found universally beneficial, and none can be considered a cure.” (4.1.2)

 

Chapter 4 of the report details the general principles and some specific advice for management of the condition by GPs and healthcare professionals. Its key messages are important and are worth restating:

 

s          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.

s          Early recognition with an authoritative, positive diagnosis is key to improving outcomes. Symptoms are diverse, but increased activity invariably worsens fatigue, malaise, and other symptoms with a characteristically delayed impact.

s          All patients need appropriate clinical evaluation and follow-up, ideally by a multidisciplinary team... The overall aim of management must be to optimise all aspects of care that could contribute to any natural recovery process... Patients can be empowered to act as partners in care.

s          Although care packages need to be individually tailored, where appropriate they should include visits from primary care teams, and assessment and provision of equipment practical assistance. (4.1.2)

 

2.8 Description of CFS/ME in children

The section of the report dealing with children and young people with CFS/ME is particularly well-written. There is a clear description of the impact of the illness on the child, the family, and the community. The development of an integrated and multidisciplinary package of services is recommended as a matter of urgency, and the statement of rights is particularly welcome:

 

“Children’s rights are safeguarded by UN convention and need to be respected at all times by professionals and parents/carers. The rights to be heard, to have their views taken into account, to access quality medical treatment, and to be protected from abuse both by individuals and by systems need particular attention.” (5.0)

 

2.9 Recommendations to healthcare professionals about benefit provision

The report encourages healthcare professionals to be sensitive about their role as facilitators of welfare provisions:

 

“Negotiations with insurance companies and the Department of Social Security about proportional and rehabilitation benefits and therapeutic work can improve outcomes, and health professionals have an important role to play by providing support and advice in these negotiations. The same level of understanding needs to be shown by medical advisors to insurance companies and the Benefits Agency about the condition, its natural course, prognosis, and range of available approaches to recovery.” (4.4.5)

 

“It is not appropriate that participation in a particular treatment regimen is made an absolute condition for continuation of sickness/disability payments.” (4.4.2)

 

“No management approach has been found universally beneficial.”

 

2.10 Appropriate attitude for healthcare professionals

There are also some clear warnings for healthcare professionals:

 

“Healthcare professionals should adopt an understanding attitude and should not get into disputes with patients about what to call the illness, or about the belief that it doesn’t exist.” (4.1.1)

 

“Treatment should always be a collaboration between the patient and the clinician, and not something imposed. Good communication and a good therapeutic relationship can make an appreciable difference.” (4.4)

 

“...our conclusion is that clinicians need to apply current knowledge despite the remaining uncertainty [about disease cause or process]; inaction due to ignorance or denial of the condition is not excusable.” (4.1)

 

“CFS/ME should be treated in the same way as any other chronic illness of unknown aetiology. The aim is to develop a supportive relationship, and provide information and education to assist the patient, families, and carers towards self management with support.” (4.1.2)

 

“All interventions need to be administered with thought and care, and in accordance with revised Department of Health recommendations on informed consent.” (4.4.2)

 

2.11 Importance of patient consent for management strategies

The need for the active consent of patients to therapeutic interventions is stressed at various points in the report.

 

“The decision to recommend a particular approach is best guided by the individual’s illness and circumstances.”

 

“The content and development of any such approach should be mutually agreed by both clinician and patient and informed by up-to-date specialist knowledge.”

 

“It is not appropriate that participation in a particular treatment regimen is made an absolute condition for continuation of sickness/disability payments.” (4.4.2)

 

“Management strategies supervised by a therapist, including activity management, cognitive behavioural therapy, and so on, can be beneficial, provided that they are agreed and viewed as a partnership.” (4.1.2)

 

2.12 Needs of the severest suffers

One welcome note in the report is the recognition of the particular needs of severest sufferers. While the Working Group chose not to highlight valid data collected by the 25% ME group, which represents the severest sufferers, in the final report, it nevertheless seems to have recognised the plight of these patients.

 

“A minority of those with CFS/ME remain permanently severely disabled and dependent on others... Current provision of services falls well below what is needed for the vast majority of severely and very severely affected patients... Yet, even if we lack easy solutions, professionals can still support, care, and provide for many patients’ needs by reaching such patients in their homes, maintaining contact, and continually exploring potential options.” (3.4.3.1)

 

“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 the inappropriateness of extreme exercise regimens that have been studied in less adversely affected patients... Care is an urgent challenge that must be addressed in appropriate and imaginative ways, drawing from service models applied to other severe chronic disabilities.” (4.4.1)

 

“The Working Group is concerned that it is necessary to make these points [about severity and its consequences] for CFS/ME, when such considerations are self-evident and part of usual clinical practice for other disorders that are better recognised.” (3.4.3)

 

“In many chronic illnesses, daily functioning, including mobility, cooking, cleaning, dressing, personal care, and social support, can be improved dramatically by sympathetic provision of appropriate practical assistance.” (4.3.3)

 

“Inaction due to ignorance or denial is not excusable.”

 

2.13 Voicing of patient and carer concerns

Use of patient voice throughout the report strengthens the narrative. They give voice to the patient concerns, and – importantly - justification to the antipathy towards health professionals felt by many people with CFS/ME. The chief points arising from the patient voices are poor recognition of CFS/ME by professionals, difficulties that arise over diagnosis, and lack of professional and public acceptance and acknowledgement.

 

“Participants felt that the widespread lack of understanding of the condition is not specific to clinicians but includes other healthcare and social care professionals. This lack of knowledge was identified by the majority of those consulted, together with a lack of communication and advice, especially in the early stages, on how to cope in general with long-term illness for families and sufferers.” (2.2.2)

 

“There is evidence that some patients ‘fight’ for referrals, and in general GPs are confused over where to refer patients... The overall experience of specialist and hospital services among participants was predominantly negative... Some patients find themselves in geographical ‘black holes’ that lack specialist provision.” (2.2.4)

 

“Severely ill are severely overlooked; just ignored and invisible... 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.” (2.3.1.1)

 

“Some carers were clearly distressed about being ignored by GPs, and some reported unpleasant behaviour.” (2.3.4)

 

“A proportion of patients feel alienated from clinical professionals by early responses to their symptoms, illness experience, and disability.” (3.5.2)

 

“People with CFS/ME frequently experience problems with accessing state benefits.” (3.5.1)

 

2.14 Summary

The positive aspects of the report listed above represent an advance in terms of recognition of the illness and its consequences. Sufferers and their carers can now state, not only that CFS/ME is a genuine illness which can be clinically diagnosed, but that the elements of best practice and management have been sketched out and that inaction by healthcare professionals due to ignorance or denial of the condition is not excusable.

 

However, the report does not describe how or when change is to occur. It does not describe the cost implications, it does not call for directives to be issued to the various health agencies or professional bodies, and it does not propose any mechanism for checking that changes will be made. Crucially, it gives no indication that the illness will be looked at again in the medium to long term, to assess whether real, meaningful change has come about.

 


 

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3. Limitations of the report

 

The positive aspects of the report listed in Section 2 concern the recognition of ME and the need for illness management in a variety of forms. However, the report has limitations. Some, such as the constrained remit, are obvious, but others are apparent only to those au fait with the issues, whether the research evidence or the deliberations of the Working Party.

 

3.1 Constrained remit

The report describes its own remit clearly: