Recommendations from the CMO's Working Group of 2002*
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.
From Section 6 of the report
Recommendations of the
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 underprovision 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.
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
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
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
The lack of clarity and consistency regarding ME
terminology is, frankly, appalling.
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.
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.
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
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.
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
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: So far - 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
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
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.
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
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.
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.
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.
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;
epidemiology and natural history;
spectrum and/or subgroups (including age-related subgroups);
Assess a wide range of
potential therapeutic interventions including symptomcontrol
outcome measures for clinical and research purposes; and
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.
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
Report of the CFS/ME Working Group January 2002 (see
full report here))