Health CommitteeWritten evidence from the ME Association (LTC 13)

1. The ME Association

This is the submission from The ME Association (MEA). The MEA is a national charity that provides information and support for people who have ME (myalgic encephalomyelitis/encephalopathy) and chronic fatigue syndrome (CFS). It also funds research into the cause and management of ME/CFS through the MEA Ramsay Research Fund.

2. Summary

The key points being made in this submission relate to:

Lack of sound epidemiological data on the prevalence of ME/CFS—which is needed to plan hospital-based services.

Unacceptable delay in diagnosis and misdiagnosis—leading to poor management and poor prognosis.

Lack of undergraduate and postgraduate medical education.

Lack of hospital-based referral services in many parts of the UK resulting in a ‘postcode lottery’.

Lack of hospital-based referral services for children and adolescents—even though ME/CFS is one of the commonest causes of long-term sickness absence from school.

An almost complete absence of hospital-based services and domiciliary services for people with severe ME/CFS.

A NICE guideline on ME/CFS which many people with ME/CFS, and their charity representatives, find unfit for purpose.


3.1 Even though the clinical descriptions are different, ME is also known as chronic fatigue syndrome (CFS) and post-viral fatigue syndrome (PVFS). There is a great deal of confusion and debate over nomenclature and definition. For the purpose of this submission, we will refer to the commonly used composite term of ME/CFS.

3.2 ME/CFS is thought to affect at least 250,000 people in the UK. It affects all age groups, including children and adolescents where it has been identified as one of the commonest causes of long-term sickness absence from school. The most common age of onset is between 20 and 40 years of age in adults and 11 to 14 in children.

3.3 ME/CFS affects all social classes and ethnic groups.

3.4 ME/CFS is recognised to be a neurological disorder by the World Health Organisation (in section G 93.3 of ICD10)—a classification that is accepted by the Department of Health.

3.5 In the majority of cases the illness affects fit and healthy people who predate the onset of their illness to an acute viral infection, or some other immune system stressor, but then ‘fail to recover’.

3.6 The key symptoms include:

exercise-induced muscle fatigue and weakness;

post-exertional malaise/symptom exacerbation;

cognitive dysfunction involving memory, concentration, attention span, information processing;

orthostatic intolerance—difficulty with tasks that require standing;

pain—which can affect muscles, joints or nerves;

on-going infective or flu-like symptoms; and

sleep disturbances.

3.7 More serious neurological symptoms occur in a minority of people with ME/CFS, especially those at the severe end of the spectrum. These may include blackouts, atypical convulsions, loss of speech, loss of swallowing—which may require assisted feeding.

3.8 Reports into the illness—from the Chief Medical Officer (R1), Medical Research Council (R2), NICE (R3), Royal Medical Colleges (R4)—have all recognised the serious and persisting ill health and disability that is caused by ME/CFS along with an urgent need to provide hospital-based referral services and carry out research into both cause and management.

3.9 Around a quarter of all people with ME/CFS fall into the severely affected category—meaning they are housebound, wheelchair-bound or bed-bound at significant stages in the illness.

3.10 Research into prognosis indicates that while many people with ME/CFS stabilize only a small minority return to normal or near normal levels of health. Most people experience a significant degree of long-term ill health and disability.

3.11 The annual cost to the UK economy in relation to medical costs, benefit payments and lost revenue has been estimated to be around £3.5 billion (R5).

4. Management

4.1 We would like to bring to the attention of the Health Committee a number of concerns in relation to the management of ME/CFS. Some are shared with other long-term conditions whereas others are unique to ME/CFS.

4.2 These concerns are repeatedly raised by people with ME/CFS. They have also have been raised on numerous occasions in both the House of Commons and the House of Lords, in meetings of the All Party Parliamentary Group on ME, which is Chaired by Annette Brooke MP, in adjournment debates, and in a joint charity forum (Forward ME Group) that is chaired by the Countess of Mar.

4.3 Unfortunately, very little progress has been made in addressing these concerns. And in relation to some aspects of management and NHS service provision the position has become worse.

4.4 The key points that we wish to make cover all points in the patient journey from diagnosis right through to management and support.

5. Lack of Epidemiological Data

5.1 Health service commissioners do not have meaningful epidemiological data on the prevalence and incidence of ME/CFS—information that is vital for commissioners in order to plan appropriate levels of service provision. Submissions from primary care trusts (PCTs) to the 2010 APPG report on NHS Service Provision (R6) confirmed that they do not have accurate patient numbers. There is therefore an urgent need for a comprehensive and accurate epidemiological study to ascertain the true extent of both diagnosed and undiagnosed ME/CFS.

6. Delay in Diagnosis

6.1 Many doctors lack the necessary knowledge and experience to confidently diagnose ME/CFS. Due to the historical background, some doctors still refuse to accept that ME/CFS exists as a clinical entity or are unwilling to use it as a diagnostic label. Consequently, a significant proportion of people with ME/CFS remain undiagnosed, misdiagnosed, or have to wait for an unacceptable period of time before the diagnosis is made.

6.2 A report by the ME Alliance (R7) found that:

53% of people with ME/CFS waited for over a year for a diagnosis.

Only 25% were diagnosed within the six month period recommended in the CMO Report.

45% of children and adolescents waited over a year for diagnosis, despite the recommended timeframe for diagnosis in this group to be three months.

6.3 As a result, people with ME/CFS often receive inappropriate or even harmful advice on management for a considerable period of time—which has a very negative impact on all aspects of management and the overall prognosis.

7. Lack of Medical Education

7.1 Much of the problem relating to diagnostic delay and bad initial management relates to the lack of medical education about ME/CFS at both an undergraduate and postgraduate level.

7.2 Organisations that are responsible for medical education—Medical Schools, Royal Colleges, General Medical Council—must therefore take a much more proactive role to ensure that all health professionals in training—doctors, nurses, occupational therapists, physiotherapists—see people with this illness and receive appropriate teaching on clinical assessment and management.

8. Heterogeneity of ME/CFS

8.1 ME/CFS is a heterogeneous condition—both from the point of view of clinical presentation and factors that are involved in causation and perpetuation. Consequently, any management programme must be linked to individual symptoms, severity of symptoms, and any other issues that may be involved in maintaining the illness—there is no place for an inflexible ‘one size fits all’ or an overly centralized approach.

9. Lack of Hospital-based Referral Services

9.1 There is currently a worrying lack of consistency in the way in which hospital-based referral services are organized for patients with ME/CFS, or where there is a possible diagnosis of ME/CFS. This was one of the main conclusions in the report on NHS Service Provision that was prepared by the APPG on ME. The report noted that:

The APPG finds the degree of variation in the availability of and access to services unacceptable. Patient evidence also indicates people want services that are physician led, multidisciplinary, and are situated in locations that are accessible to those with significant mobility problems.

The APPG recommend the DoH takes steps to remedy the variation and ensure that each PCT offers a range of services promptly—a process that should involve meaningful consultation with local patients or patient support groups.

10. Lack of Services for Children and Adolescents

10.1 In relation to children and adolescents the situation is even worse. This is largely due to the fact that most of the existing NHS referral services only provide diagnosis and management to people over the age of 16. The APPG report concluded:

This is unacceptable and can lead to tragic consequences.

10.2 The APPG report went on to recommend that all involved should:

Undertake a detailed review of current services for children and adolescents to ensure that all receive adequate care and that all decisions are made in conjunction with personal carers, education authorities and social services where appropriate.

10.3 Despite these very clear recommendations there has been no meaningful action from the vast majority of PCTs since 2010—and in some locations where specialist referral services have been set up these have later been downgraded or closed. This is clearly an unacceptable situation that must now be addressed by the new Clinical Commissioning Groups.

11. Lack of Services for People with Severe ME/CFS

11.1 As already noted, approximately 25% of people with ME/CFS will be classified as being severely affected at some stage in their illness.

However, this group have great difficulty in accessing hospital -based services, and are not normally offered any form of home—based domiciliary service. Dedicated in-patient beds for the assessment and management of people with severe ME/CFS are almost non-existent. Consequently, many people at the severe end of the spectrum receive no NHS care at all—a situation that is clearly inconsistent with the NICE guideline on ME/CFS.

11.2 The APPG report concluded:

Specialist referral services must ensure that high priority is given to the needs of the severely affected, especially in relation to domiciliary services and in patient facilities for assessment and management.

12. The NICE Guideline on ME/CFS

12.1 The current (2007) NICE guideline for the management of ME/CFS has been heavily criticized by people with ME/CFS, and the charities, on the grounds that it places far too much emphasis on the use of two behavioural interventions—graded exercise therapy (GET) and cognitive behaviour therapy (CBT)—that are consistently found to be either ineffective or even harmful by a significant proportion of people with ME/CFS. In addition, NICE has failed to recognize the fact that repeated surveys of patient opinion, including the one in the CMO report, have concluded that the most effective and safe form of activity management is a process known as pacing.

12.2 Surveys carried out by the ME/CFS support charities have repeatedly confirmed a high degree of dissatisfaction with the way in which the NHS is almost indiscriminately recommending these two treatments to people with mild or moderate ME/CFS.

12.3 The largest and most recently reported survey carried out by the MEA (R8), which involved over 4,000 respondents, found that in relation to CBT (997 respondents):

2.8% were ‘greatly improved’.

23.1% were ‘improved’.

54.6% were ‘no change’.

11.6% were ‘slightly worse’.

7.9% were ‘much worse’.

12.4 In relation to GET (906 respondents):

3.4% were ‘greatly improved’.

18.7% were ‘improved’.

21.4% were ‘no change’.

23.4% were ‘slightly worse’.

33.1% were ‘much worse’.

12.5 In relation to pacing (2137 respondents):

11.6% were ‘greatly improved’.

59.6% were ‘improved’.

24.1% were ‘no change’.

3.5% were ‘slightly worse’.

1.2% were ‘much worse’.

12.6 The NICE guideline also downgrades most aspects of the pragmatic management of key symptoms on the basis that there is an inadequate evidence based guidance of guideline production. This is not the position taken by the 2002 CMO Report into ME/CFS.

12.7 The MEA does not therefore believe that the NICE guideline is fit for purpose and we are very disappointed to learn that a proper review of this guideline with stakeholder input that was planned for 2013 appears to have been cancelled and will now replaced by some form of brief internal review.

13. Summary

13.1 In summary, there are a number of issues relating to the management of ME/CFS that are not being addressed by all those who should be taking action. Most of these issues have already been referred to in reports to government—including the 2002 Chief Medical Officer’s Report and the 2010 report from the APPG on ME on NHS Service Provision. Sadly, there has been a distinct lack of action on behalf of all those responsible to address these concerns. This is clearly unacceptable.

13.2 Action therefore needs to be taken in the following areas:

13.3 An epidemiological study to establish the number of people—adults and children—with ME/CFS, along with the degree of severity. This will enable Clinical Commissioning Groups to plan an appropriate local level of service provision.

13.4 All health professionals should receive a proper period of medical education on the diagnosis and management of ME/CFS during their training. ME/CFS should also form part of continual professional development/education at a postgraduate level.

13.5 Early and accurate diagnosis in primary care, along with appropriate early management, to reduce the chance of a more severe and prolonged illness occurring

13.6 An end to the postcode lottery of NHS referral services—everyone with ME/CFS, adults and children, severely affected, should have access to a local hospital where physician-led specialist input on diagnosis and management can be obtained, where appropriate.

13.7 Physician-led multidisciplinary management programmes should be introduced which recognize that treatment has to be tailored to individual needs based on stage, severity and symptoms.

The ME Association would be very willing to give oral evidence to any of the hearings that the Health Committee intends to arrange on this very important topic.

8 May 2013


1 ME/CFS Independent Working Group (2002). A Report of the ME/CFS Independent Working Group—Report to the Chief Medical Officer.

2 MRC website section on research into ME/CFS:

3 NICE clinical guideline 53 (2007). Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy). Diagnosis and management of CFS/ME in adults and children.

4 Royal Colleges of Physicians, Psychiatrists and General Practitioners (1996). Chronic fatigue syndrome: Report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners.

5 Bibby J and Kershaw A. How much is ME/CFS costing the country: Report prepared by the Survey and Statistical Research Centre, Sheffield Hallam University for Action for ME 2003, and for Action for ME and The ME Association, 1996.

6 All Party Parliamentary Group on ME (March 2010). Inquiry into NHS service Provision for ME/CFS.

7 ME Alliance (2005). ME Diagnosis: Delay Harms Health. Early Diagnosis: why is it so important?

8 ME Association (2012). Managing my ME—What people with ME/CFS and their carers want from the UK’s health and social services.

Prepared 3rd July 2014