A Review of the Status as at January 2007

As we enter 2007 we can look back four years and ask - Have the recommendations from the CMO's Working Group of 2002 been achieved? Let us examine them again.

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From Section 6 of the report 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.

January 2007:

The terminology is in as much disarray as ever. The recent NICE Draft Guidelines (See IiME NICE Guidelines) are a shoddy attempt to provide direction in this area and do nothing to help this issue and there is a conspicuous absence of comment from the CMO, the MRC and the Department of Health.

Some ME charities have even adopted a different name for the acronym ME - something which does nothing but damage to the cause for pwme as it goes against the World Health organisation ICD classification.

From the foreword above '...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.'

The lack of clarity and consistency regarding ME terminology is, frankly, appalling.

RESULT: FAILURE

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 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.

January 2007:

The number of stories which continue to come in from pwme relating to disbelief over the physical nature of their condition indicates that much is still to be done in the healthcare area. With NHS budgets being squeezed and healthcare staff being cut the future for provision of services for ME sufferers is not itself healthy.

The suggestion that a child psychiatrist is the best discipline to treat a child with ME is laughable to those of us who have children with ME.

The national guidance mentioned in this section will likely be those from NICE. The recent appalling draft guidelines document on CFS/ME from NICE shows this area not to have progressed since the CMO Working Group made this recommendation.

Whilst we feel that progress is taking place in the perception of ME by clinicians it is still too sporadic.

A call from the CMO for all healthcare staff to adopt the Canadian Guidelines might be a valid course of action to effect part of this recommendation.

RESULT: FAILURE

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.

January 2007:

13 ME Clinics/Centres have been established by the government in the UK. Opinion on these varies - a couple are given credit by their patients (example in Norfolk) - due mainly to the lead clinician believing in the organic nature of the illness. The job adverts for some of these centres a while back show the clear bias towards psychiatric therapies for ME which exists in the NHS.

The level of service regarding the other recommendations is entirely inconsistent in the UK and does not appear to have been coordinated or funded properly.

RESULT: FAILURE

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.

January 2007:

The fact that a young woman can be sectioned by psychiatrists in the twenty-first century in the UK, because she suffers from ME, means that education of healthcare professionals has not produced the desired result.

GPs and medical specialists are dependent on NICE guidelines. IiME have personal experience of the lack of willingness by healthcare professionals to do much more than note-taking when examining children with ME.

The awareness of ME amongst the general public and media has not increased thanks to policies initiated by the CMO. Awareness has only been increased due to the work of the many unsung heroes in the ME community who perform their work without any reward.

We feel we cannot rate the education of healthcare staff or other sections of the community as having been performed well or even attempted to be performed.

RESULT: FAILURE

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.

January 2007:

An easy appraisal to make. Government investment in research on CFS/ME has been non-existent.

There is no epidemiological study completed or underway.

No clinical research trials and the basic science and pathology behind this illness has been hijacked by lobbies of psychiatrists and others who have vested interests in retaining the status quo. Looking at these 'urgent' requirements then only the last point might be claimed as a partially attempted (in that NICE's recent draft guidelines are all about saving money - but are dangerously limited to unsafe therapies).

The various governments (via the Department of Health and ministers) and the Medical Research Council must bear the responsibility for this currently ineffective, unprofessional, unscientific, unjust and haphazard state of affairs.

RESULT: FAILURE

(*A Report of the CFS/ME Working Group January 2002 (see full report here))