The World Health Organization (WHO) has reaffirmed with NHS Digital that the proposal submitted on the ICD-11 platform for chronic fatigue is currently with the relevant groups of the organisation to consider the scientifically-based placement in the classification. We understand that the WHO are still reviewing this matter and expect that the next iteration of ICD-11, expected in April 2017, will reflect the WHO’s conclusions.

The Joint Commissioning Panel for Mental Health is not a Government body, it is a collaboration between 17 leading organisations including the Department of Health, and is co-chaired by the Royal College of Psychiatrists and the Royal College of General Practitioners. The Department was not closely involved in the writing or production of this document.

The National Institute for Health and Care Excellence (NICE) is currently reviewing the guidance GC53 to consider whether it should be updated to take account of new evidence. NICE are expected to reach a decision on whether the guidance should be updated in summer 2017.

The MRC welcomes applications to support research into any aspect of human health and these are subject to peer review and judged in open competition. Awards are made on the basis of the scientific quality of the proposals made. The MRC has promoted research into Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME) through highlight notices for a number of years.

Concerning dissatisfaction of patients, I will write to the Chair of the Medical Research Council to request an account of the development of relevant policies and in particular how CFS/ME patients’ views have been considered. I will deposit a copy of his reply in the Libraries of the House.

Management of individual staff within the Medical Research Council is a matter for the MRC as the legal employer.

Queen Mary University of London, as the research organisation which held the award, is responsible for the management of the study, including the investigation of any concerns relating to research conduct and research integrity.

Whilst the Medical Research Council (MRC) was one of the funders of the PACE trial, the responsibility for the management of the trial rested with the host research institution, Queen Mary University of London (QMUL). This responsibility included oversight of the trial and the investigation of any well-founded allegations of misconduct that are brought to its attention. As part of this oversight, in accordance with MRC guidance on best practice, a trial steering committee was set up and supported by various sub-groups, including a data monitoring committee. The MRC was an observer on the trial steering committee.

Anyone wishing to raise concerns to over the conduct of individual researchers or research programmes is advised to contact QMUL in the first instance to allow the University to investigate appropriately. It would be inappropriate for BEIS to intervene in such investigations or to impose sanctions against researchers.

Queen Mary University of London, as the research organisation which held the award, is responsible for the management of the study, including the investigation of any concerns relating to research conduct and research integrity.

Whilst the Medical Research Council (MRC) was one of the funders of the PACE trial, the responsibility for the management of the trial rested with the host research institution, Queen Mary University of London (QMUL). This responsibility included oversight of the trial and the investigation of any well-founded allegations of misconduct that are brought to its attention. As part of this oversight, in accordance with MRC guidance on best practice, a trial steering committee was set up and supported by various sub-groups, including a data monitoring committee. The MRC was an observer on the trial steering committee.

Anyone wishing to raise concerns to over the conduct of individual researchers or research programmes is advised to contact QMUL in the first instance to allow the University to investigate appropriately. It would be inappropriate for BEIS to intervene in such investigations or to impose sanctions against researchers.

I refer the hon. Member to the Answer I gave on 23 November 2016 to his Question 53645.

I refer the hon. Member to the Answer I gave on 23 November 2016 to his Question 53645.

The National Institute for Health and Care Excellence (NICE) is an independent body and is responsible for ensuring that its guidance remains up to date. NICE has advised that it has brought forward the next review date for its guidance on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis from 2019 to 2017 to coincide with the expected publication of relevant new evidence.

NICE’s aim is to make a decision on whether an update of the guideline is required by the end of 2017.

The Government supports research into Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) through the Medical Research Council (MRC), which receives funding from the Department for Business, Energy and Industrial Strategy; and through the National Institute for Health Research (NIHR), which is funded by the Department of Health.

Together the MRC and the NIHR welcome high quality applications for research into all aspects of CFS/ME which would include studies to investigate the biological causes of the condition, improve our understanding of it and to evaluate treatments.

CFS/ME research is a current MRC priority area and has funded such research to the tune of £2.1 million. Research proposals are particularly encouraged that address the mechanisms underlying chronic changes related to CFS/ME and which aim to increase research capacity by bringing new researchers into the field, building partnerships and supporting multidisciplinary teams to tackle research challenges.

Personal Independence Payment (PIP) is a non-means-tested, non-taxable cash benefit that is paid regardless of the employment status of the claimant. It has been designed to take full account of fluctuating and variable conditions.

The Department encourages claimants to provide as much relevant evidence as necessary to support their claim. The “How your disability affects you” form and accompanying guidance sets out the range of information that can help the Department reach a decision. The guidance for Health Professionals also sets out sources of further evidence which could help inform their advice to the Department (Section 2.3 Further Evidence); this includes family members, carers or anyone else who supports them.

This guidance can be accessed on the gov.uk website:

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/547146/pip-assessment-guide.pdf

A home consultation can be offered where a claimant is unable to travel to a consultation as a result of their health condition or impairment.

Situations where a claimant may need a home consultation can include where a person’s diagnosis suggests a significant disability that may make travel extremely difficult or the claimant provides evidence from a health professional that they are unable to travel due to their health condition or impairment.

The number of neurology consultants employed by the National Health Service who specialise in the treatment of myalgic encephalomyelitis is not collected centrally.

As the symptoms of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) resemble those of other forms of debilitating illness, and there is no test with which to make an accurate diagnosis, it is not always easy to diagnose single cases of the condition. Diagnosis relies on clinical observation of symptoms by healthcare professionals. In 2007, the National Institute for Health and Care Excellence (NICE) produced the clinical guidance, Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children. This guidance set out best practice on the diagnosis, treatment care and support of children and adults with CFS/ME.

The NICE last reviewed the guidance with its stakeholders, including CFS/ME charities, in 2013. The review found no update was required. The full guideline may be viewed on the NICE website at the following link:

www.nice.org.uk/guidance/cg53

No data or information is available concerning the number of people diagnosed with myalgic encephalomyelitis that have taken early retirement after receiving that diagnosis.

The vast majority of services for people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) are the responsibility of local clinical commissioning groups. The Department does not hold information about the configuration of local services. However, we understand that there a number of clinics that specialise in the treatment of CFS/ME around the country.

The ME Association has published a list of these services, available at:

www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk

The Department encourages claimants to provide as much relevant evidence as necessary to support their claim. The “How your disability affects you” form and accompanying guidance sets out the range of information that can help the Department reach a decision. The guidance for Health Professionals also sets out sources of further evidence which could help inform their advice to the Department, this includes family members, carers or anyone else who supports them.

Before claimants are invited for a face-to-face consultation, all of the evidence held is reviewed and if, at that stage, a decision can be made on the paper evidence alone, then claimants will not be required to attend a face-to-face consultation. Alternatively, further evidence that might help inform the Department’s decision on the claim can be requested by the Health Professional.

If the Health Professional cannot provide advice to the Department at this stage, or where there is insufficient or no other suitable sources of evidence on which to make an assessment, claimants will be invited to attend a face-to-face consultation. This gives claimants the opportunity to put across their own views of the impact of their health condition on their everyday lives, ensuring that decisions reflect the best evidence. In some cases we carry out consultations in the claimant’s home.

It is the responsibility of the professional regulators, such as the General Medical Council (GMC), to set the standards and outcomes for education and training and approve training curricula to ensure newly qualified healthcare professionals are equipped with the knowledge, skills and attitudes to provide high quality patient care.

Higher Education Institutions are responsible for ensuring the programmes they provide allow healthcare students to meet the outcomes set out by the regulators upon graduation.

The royal colleges, for example the Royal College of Nursing, the Royal College of General Practitioners and the Royal College of Surgeons, also have responsibility for developing curricula for doctors and nurses, in particular postgraduate curricula.

Health Education England works with bodies that set curricula such as the GMC and the royal colleges to seek to ensure training meets the needs of patients.

The commissioning of services for people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), is a local matter. To support the local NHS in shaping services for people with CFS/ME, the National Institute for Health and Care Excellence (NICE) has published a clinical guideline on the management of CFS/ME in adults and children, which set outs best practice on the care, treatment and support of people with the condition.

Although there is no cure for CFS/ME, there are treatments that may help to ease symptoms. The NICE guideline on CFS/ME recommends treatment such as cognitive behavioral therapy and graded exercise therapy approaches, which have the clearest research evidence of benefit. However, the guideline is clear that there is no one form of treatment to suit every patient. Treatment approaches will not be appropriate for all patients and the needs and preferences of patients should be taken into account. Shared decision-making between patients and healthcare professionals should take place during diagnosis and all phases of care. Furthermore, patients should be offered information about local and national self-help groups and support groups for people with CFS/ME and their carers.

NICE last reviewed the guidance with its stakeholders, including CFS/ME charities during 2013. The review found no update was required. The full guideline may be viewed on the NICE website at the following link:

www.nice.org.uk/guidance/cg53