The postgraduate training curriculum of doctors is set by the relevant Royal College and has to meet the standards set by the General Medical Council (GMC). It emphasises the skills and attributes that a doctor must develop in order to ensure accurate and timely diagnoses and to develop a treatment plan to meet patients’ needs.

The GMC published revised standards for postgraduate training curricula in May 2017. These provide an integrated standards framework for the development, approval and provision of postgraduate medical education and training in the United Kingdom.

The Department, through the National Institute for Health Research, has recently commissioned one project on the treatment of symptoms of Myalgic Encephalomyelitis (ME). Professor Esther Crawley, of the University of Bristol, was awarded funding for research entitled, ‘Investigating the effectiveness and cost effectiveness of using FITNET to treat paediatric CFS/ME in the UK’. This project began in May 2016. Full details of the research can be found at:

https://www.journalslibrary.nihr.ac.uk/programmes/hta/14192109/#/summary-of-research

The Department does not record disabling conditions of Personal Independence Payment (PIP) claimants at registration stage. Primary disabling conditions are recorded on the PIP Computer System only for those claimants who undergo a face to face or paper based assessment.

Although Myalgic Encephalomyelitis (ME) is not recorded separately, we can provide award and disallowance statistics after assessment for claimants whose primary disability, as recorded on our systems, is Chronic Fatigue Syndrome (CFS).

The table below shows the annual volume of awards and disallowances where the claimant’s primary disabling condition was recorded as CFS and a face to face or paper based assessment took place.

Source: PIP Computer System

*2017 figures are to 31^st October.

No assessment has been made.

The National Institute for Health and Care Excellence reports that the annual estimated prevalence is at least 0.2–0.4% (around 190,000) in the United Kingdom. Population prevalence estimates, along with data on services usage and other local intelligence can support commissioners to deliver high quality services for the populations they serve.

The department has no direct knowledge of the study entitled ‘Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis is a major cause of school absence: surveillance outcomes from school-based clinics’, published by the British Medical Journal in 2011 or any activity undertaken by schools in connection with this study.

The Department does not record disabling conditions of Personal Independence Payment (PIP) claimants at registration stage. Disabling conditions are recorded on the PIP Computer System only for those claimants who undergo a face to face or paper based assessment.

Therefore we are unable to provide the number of refused PIP applications which were made by people with Myalgic Encephalomyelitis.

The chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) National Outcome Database was developed by three NHS Clinical Network Co-ordinating Centres in 2006 and managed by Bristol University. Its development was part of a wider initiative to establish services for CFS/ME in the National Health Service at the time. Neither the Department nor NHS England has oversight of it, or responsibility for it.

The Department does not record disabling conditions of Personal Independence Payment (PIP) claimants at registration stage. Disabling conditions are recorded on the PIP Computer System only for those claimants who undergo a face to face or paper based assessment.

Therefore we are unable to provide the number of refused PIP applications which were made by people with ME.

The commissioning of services for patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a local matter. The current National Institute for Health and Care Excellence (NICE) guidance on CFS/ME advises that healthcare professionals should provide diagnostic and therapeutic options to patients that reflect their needs and preferences. This may include providing services in a patient’s home or using telephone or email to contact. Such approaches may also include Skype consultations where available and appropriate.

On 20 September 2017, NICE announced plans to undertake a full review of the guidance.

There is information readily available on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) for both healthcare professionals and the general public via NHS Choices website. Further information is also provided in the National Institute for Health and Care Excellence (NICE) clinical guidance which can be found via their website. This information is provided in formats suitable for both professionals and the public. Both the NHS Choices and NICE guidance can be found at the following links:

www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

www.nice.org.uk/guidance/cg53

On 20 September 2017, NICE announced plans to undertake a full review of the guidance to ensure it reflects the latest available evidence.

Education and training is also an important feature in building the awareness of clinical professionals. In terms of education and training, the General Medical Council sets out the knowledge, skills and behaviours that new United Kingdom medical graduates must be able to demonstrate and Royal Medical Colleges, such as the Royal College of General Practitioners (RCGP) set the standards for postgraduate medical education in general practice. General practice is where most patients with CFS/ME are likely to be managed, and the condition is identified as a key area of clinical knowledge in the RCGP Applied Knowledge Test (AKT) content guide. The AKT is a summative assessment of the knowledge base that underpins general practice in the United Kingdom within the context of the National Health Service and is a key part of general practitioner’s qualifying exams.

Once fully qualified, clinicians are responsible for ensuring their own clinical knowledge remains up-to-date and for identifying learning needs as part of their continuing professional development. This activity should include taking account of new research and developments in guidance, such as that produced by NICE.

There are no specific plans at this point.

NHS England’s Long Term Conditions Unit works with partners such as voluntary sector organisations (including those with a remit on chronic disease) to synchronise communications activity in line with many annual awareness days. The NHS England media team may also provide support through social media to maximise the reach of established campaigns.

This data is not available.

Clinical commissioning groups (CCGs) are responsible for commissioning many healthcare services to meet the needs and requirements of their local population including those for people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). In doing so, CCGs commission services that reflect the needs of local people and that support improvements in health and healthcare outcomes.

The National Institute for Health and Care Excellence (NICE) guidance advises that any decision to refer a person to specialist CFS/ME care should be based on their needs, the type, duration, complexity and severity of their symptoms, and the presence of comorbidities. The decision should be made jointly by the person with CFS/ME and the healthcare professional. Referral to a specialist should be offered within six months of presentation to people with mild CFS/ME, within three to four months of presentation to people with moderate CFS/ME symptoms and immediately to people with severe CFS/ME symptoms.

The National Institute for Health and Care Excellence (NICE) guidance set outs best practice for clinicians on the diagnosis, treatment care and support of people with myalgic encephalomyelitis and supports commissioners to to plan services for local populations. The full guidance can be found at the following link:

www.nice.org.uk/guidance/cg53

On 20 September 2017, NICE announced its decision to undertake a full update of the guidance. More information on this decision can be found at the following link:

www.nice.org.uk/guidance/cg53/resources/surveillance-report-2017-chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-2007-nice-guideline-cg53-pdf-5964455783941

Clinical commissioning groups (CCG) are responsible for commissioning many healthcare services to meet the needs and requirements of their local population, including those for people with chronic fatigue syndrome/myalgic encephalomyelitis. In doing so, CCGs commission services that reflect the needs of local people and that support improvements in health and healthcare outcomes.

The National Institute for Health and Clinical Excellence (NICE) guidance set outs best practice for clinicians on the diagnosis, treatment care and support of people with myalgic encephalomyelitis and supports commissioners to to plan services for local populations.

On 20 September 2017, NICE announced plans to undertake a full review of the guidance.

A copy of the guidance is attached.

Chronic Fatigue Syndrome (CFS) is a condition that occurs naturally in the age group eligible for human papillomavirus (HPV) vaccine. The Medicines and Healthcare products Regulatory Agency has completed a United Kingdom epidemiological study which found no evidence to suggest that HPV vaccine may increase the risk of developing CFS. The results of this study were published in a peer-reviewed scientific journal in 2013.

This finding is further supported by the results of a recent population-based study in Norway, which similarly found no evidence of a causal association between HPV vaccine and CFS. Copies of HPV vaccination and risk of chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide register-based study from Norway and Bivalent human papillomavirus vaccine and the risk of fatigue syndromes in girls in the UK are attached.

The National Institute for Health and Care Excellence (NICE) guideline on Chronic Fatigue Syndrome/Myalgic Encephaolomyelitis, published in 2007, makes a number of recommendations in regard to accessing education. The clinician overseeing an individual’s care should provide information on returning to work or education and recommend flexible adaptions that would make this possible. This may include, with consent, clinicians liaising with education providers and support services. The ability of a person to continue in education should be addressed early and reviewed regularly.

The NICE guidance set outs best practice for clinicians on the diagnosis, treatment care and support of people with the condition and supports commissioners to to plan services for local populations. The full guidance can be found at the following link:

www.nice.org.uk/guidance/cg53

On 20 September 2017, NICE announced its decision to undertake a full update of the guidance. More information on this decision can be found at the following link:

www.nice.org.uk/guidance/cg53/resources/surveillance-report-2017-chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-2007-nice-guideline-cg53-pdf-5964455783941

The National Institute for Health and Care Excellence (NICE) has advised that it expects to publish the final updated guidance on myalgic encephalomyelitis in October 2020. The guideline update will be developed through NICE’s established clinical guidelines process that includes full public consultation.

No assessment he has made of the effect of cognitive behavioural therapy (CBT) and graded exercise therapy (GET) treatment offered by the National Health Service for patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

The National Institute for Health and Care Excellence (NICE) guideline on CFS/ME, published in 2007 and rounitely reviewed thereafter, recommends treatments such as CBT and GET approaches be considered. On 20 September 2017, NICE announced its decision to undertake a full update of this guideline, following a review of the latest available evidence on the diagnosis and management of CFS/ME and a public consultation. More information on this decision can be found at the following link:

www.nice.org.uk/guidance/cg53/resources/surveillance-report-2017-chronic-fatigue-syndromemyalgic-encephalomyelitis-or-encephalopathy-diagnosis-and-management-2007-nice-guideline-cg53-pdf-5964455783941

The Department’s National Institute for Health Research (NIHR) welcomes funding applications for research into any aspect of human health, including myalgic encephalomyelitis (ME); it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity. Currently, the NIHR is funding one project on ME; a large randomised controlled trial of an internet-based cognitive behavioural therapy for children aged 11-17 years. It is being led by Professor Esther Crawley at Bristol University and is funded for £994,430. It began in May 2016 and further information on this, and all NIHR funded projects, can be found at:

https://www.journalslibrary.nihr.ac.uk/programmes/hta/14192109/#/summary-of-research

Information on the exact number of patients receiving treatment for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is not collected. The National Institute for Health and Care Excellence (NICE) clinical guideline, ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children estimates that the annual prevalence is approximately 4,000 cases per million of the population.

The NICE clinical guideline set outs best practice for clinicians on the diagnosis, treatment, care and support of people with the condition and supports commissioners to to plan services for local populations. NICE routinely reviews its guidance to ensure it reflects the latest available evidence, including international evidence. In spring 2017, NICE reviewed the CFS/ME guideline to assess whether new research on CCFS/ME would impact on the current guideline recommendations. This included looking at new evidence concerning diagnostic criteria. Having assessed the evidence, NICE published its provisional recommendation not to update the NICE guideline for consultation on 10 July for a period of two weeks. NICE’s final recommendation is expected in October 2017.

In terms of training, the General Medical Council sets out the knowledge, skills and behaviours that new United Kingdom medical graduates must be able to demonstrate and Royal Medical Colleges, such as the Royal College of General Practitioners (RCGP) set the standards for postgraduate medical education in general practice. General practice is where most patients with CFS/ME are likely to be managed, and the condition is identified as a key area of clinical knowledge in the RCGP Applied Knowledge Test (AKT) content guide. The AKT is a summative assessment of the knowledge base that underpins general practice in the UK within the context of the National Health Service and is a key part of general practitioner’s (GPs) qualifying exams.

Once fully qualified, clinicians are responsible for ensuring their own clinical knowledge remains up-to-date and for identifying learning needs as part of their continuing professional development. This activity should include taking account of new research and developments in guidance, such as that produced by NICE.

The Department has made no assessment has been made of guidelines on CFS/ME published by health authorities in Canada and other countries.