Both the assessment for Personal Independence Payment (PIP) and the Work Capability Assessment (WCA) are functional assessments designed to respectively contribute towards the extra costs that arise as a result of a long-term health condition or disability, and to assess an individual’s capability to work. Both benefits are based on the impact of a person’s disability or health condition, not on the condition itself. This is important, as we recognise that the same condition can affect different people in different ways.

Assessors are provided with training and guidance in the full range of health conditions, including ME. For instance, all WCA assessors have access to a learning module on chronic fatigue syndrome (CFS)/ME, that is externally quality assured by an expert clinician. Furthermore, the PIP providers have recently been involved in a programme of engagement with CFS/ME stakeholders, and have developed a comprehensive suite of training products on CFS/ME.

The Department recognises the sensitivities with using certain terminology when referring to the new criteria and will be replacing the term non-physical disability with “non-visible (‘hidden’) condition” in the guidance.

The new criteria include people who are unable to walk or have very considerable difficulty when walking, are at risk of serious harm to their health or safety or are unable to undertake a journey without it causing very considerable psychological distress. People with conditions such as myalgic encephalomyelitis, or Parkinson’s disease, may qualify for a badge if they meet these criteria.

General practice is where most patients with chronic fatigue syndrome/myalgic encephalomyelitis are likely to be managed, and the condition is identified as a key area of clinical knowledge in the Royal College of General Practitioners (GPs) 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 GPs’ qualifying exams.

The National Institute for Health and Care Excellence (NICE) guideline for ‘Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) (or encephalopathy): Diagnosis and management of CFS/ME in adults and children’, was published in 2007 to support clinicians in the diagnosis, treatment, care and support of people with ME. This sets outs evidence-based best practice for the management of people with the condition and assists commissioners in planning services for local populations. The guideline recommended graded exercise therapy as a safe and appropriate treatment for mild to moderate CFS/ME, in line with the best available evidence.

The NICE guideline acknowledges that there is no one form of treatment to suit every patient and that treatment and care should take into account the personal needs and preferences of the patient. Decisions concerning the appropriateness of treatments should be made by on a case by case basis, and in discussion with patients, and their families or carer, if appropriate.

On 20 September 2017, NICE announced its decision to undertake a full update of the guideline following a review of the latest available evidence on the diagnosis and management of CFS/ME and a public consultation. New guidance is expected in October 2020. More information on this update can be found at the following link:

www.nice.org.uk/guidance/indevelopment/gid-ng10091

As with the vast majority of National Health Service care, the design and delivery of services for people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is the responsibility of local clinical commissioning groups.

The National Institute for Health and Care Excellence guideline ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children’, published in 2007, sets out best practice for clinicians and commissioners in the diagnosis, treatment and support of patients with CFS/ME. The guidance can be found at the following link:

www.nice.org.uk/guidance/cg53

No specific assessment has been made. The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing evidence-based guidance for the National Health Service to support clinicians and commissioners to plan and deliver services. Clinical guidelines are developed by expert groups that include stakeholder and patient representation. Prior to final publication, they are subject to public consultation and, once published, are routinely reviewed to ensure the guidance reflects the latest available evidence.

In 2007, NICE published the clinical guideline, ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children’. This set out best practice in the diagnosis, treatment, care support of people with the condition.

On 20 September 2017, NICE announced its decision to undertake a full update of the guideline following a review of the latest available evidence on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis and a public consultation. New guidance is expected in October 2020. More information on this update can be found at the following link:

www.nice.org.uk/guidance/indevelopment/gid-ng10091

Access to Work offers practical and financial support with the additional costs faced by individuals whose health or disability affects the way they do their job, including people with Myalgic Encephalomyelitis (ME).

Although we do not disaggregate data for people with Myalgic Encephalomyelitis in the Access to Work statistics, last year we published ‘Access to Work: Qualitative research with applicants, employers and delivery staff’, which included a case study for an applicant with ME. The individual in question returned to employment in a call centre role after 10 years off due to ill-health. Through Access to Work, they received a suitable chair and keyboard, which greatly reduced the joint pain they had been experiencing and enabled them to stay in the new role.

The Department is committed to ensuring all claimants have access to the right tailored support when they need it. Work Coaches are trained to adjust conditionality to reflect individual circumstances, particularly those with caring responsibilities or health conditions.

The Lightning Process (LP) is not offered as a part of the chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) standard treatments on the National Health Service. Subject to the nature of the safeguarding concerns, issues should be directed to the relevant professional regulator, should the practitioner be a member of a registered profession; the local authority (trading standards office or children’s service), if false claims are being made about the effectiveness of the treatment or welfare of a child is a concern; or the police, if a crime is involved.

The LP involves a course of three half-days of training aiming to teach participants how to use their brain to improve their body's health.

A randomised controlled trial with 100 adolescents aged 12-18 was undertaken by researchers in Bristol. Participants were randomised into two groups: those who received standard CFS/ME treatment and those who received the standard treatment plus the LP.

Researchers found those who received the LP had better physical function, were less tired and less anxious after six months. At 12 months, they had further improvement in physical function, and improved depression scores and school attendance. This research trial had several limitations as set out in the peer reviewed journal article. This was a very small trial and so it would need to be repeated in a much larger group to demonstrate more generalisable findings. Participants were not blinded so their self-reported outcomes might have been biased, for example participants may have been more likely to report positive outcomes because they knew they were getting additional therapy in the LP group. Of all those eligible to participate in the trial, fewer than 30% agreed to take part. Participants in the trial did not have any serious adverse events attributable to either LP or usual care. LP therapy was given in addition to the usual CFS/ME care as a no-treatment control group was not deemed ethical, therefore it cannot be suggested as a replacement for current specialised medical care.

Independent ethical review ensures that participant safety is at the centre of all research. In the United Kingdom, review by an ethics committee is one of a series of safeguards intended to protect the people taking part in the research. The operating procedure for trials in the UK has inbuilt safeguards designed to protect patients from harm in the event an intervention is ineffective or potentially harmful. Participants are free to withdraw from a study at any time.

There is a real emphasis on ensuring that assessors are best placed to identify how fluctuating health conditions and hidden disabilities will impact on the assessment. I am disappointed to hear what the hon. Lady reports and I would be happy to meet her to discuss it further.

Earlier this year I met representatives of those who carry out work capability assessments and representatives from the previous disability Minister’s office. I was assured

that those carrying out capability assessments were well aware of unseen conditions such as ME, but since then I have been overwhelmed with correspondence saying that people with ME are being declared fit for work. What work is the Minister doing to ensure that the assessors are aware of conditions such as ME?

Services for people with myalgic encephalomyelitis; including those provided by the voluntary sector, are commissioned by local clinical commissioning groups. It is the responsibility of the local National Health Service commissioners to ensure NHS services are commissioned to meet local need and that they address any shortfalls in provision.

This data is not available. Services for people with myalgic encephalomyelitis are commissioned by local clinical commissioning groups. It is the responsibility of the local National Health Service commissioners to ensure NHS services are commissioned to meet local need and that they address any shortfalls in provision. Where appropriate, this will include commissioning services provided by voluntary sector organisations.

This data is not available. Services for people with myalgic encephalomyelitis are commissioned by local clinical commissioning groups. It is the responsibility of the local National Health Service commissioners to ensure NHS services are commissioned to meet local need and that they address any shortfalls in provision. Where appropriate, this will include commissioning services provided by voluntary sector organisations.

Funding, authorised by the then Chief Medical Adviser to the Department for Work and Pensions, was made available as a contribution from the department to the PACE study. The Department continues to be involved in research activity relevant to its remit.

This data is not available. Services for people with myalgic encephalomyelitis are commissioned by local clinical commissioning groups. It is the responsibility of the local National Health Service commissioners to ensure NHS services are commissioned to meet local need and that they address any shortfalls in provision.

The Department for Health and Social Care funds research through the National Institute for Health Research (NIHR). The Government also supports research relating to myalgic encephalomyelitis (ME) through the Medical Research Council (MRC), part of the Department for Business, Environment and Industrial Strategy partner organisation, UK Research and Innovation. Both the NIHR and the MRC welcome funding applications for research into any aspect of human health, including ME; it is not usual practice to ring-fence funds for particular topics or conditions. Applications to the NIHR and the MRC 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.

Research into chronic fatigue syndrome CFS/ME is an area of strategic importance for the MRC and the only medical condition for which the MRC has a dedicated Highlight Notice which identifies areas where proposals are particularly encouraged. These include proposals which have a focus on the underpinning mechanisms of ME/CFS, with priority areas including immune dysregulation; pain; improved sub-phenotyping and stratification of ME/CFS; and mechanisms of ME/CFS in children and young people.

No assessment has been made. Services for people with chronic fatigue syndrome/myalgic encephalomyelitis are commissioned by local clinical commissioning groups to meet local need, including addressing any shortfalls in provision, taking into account best practice guidance, such as that produced by the National Institute for Health and Care Excellence.

Services for people with myalgic encephalomyelitis are commissioned by local clinical commissioning groups. It is the responsibility of the local National Health Service commissioners to ensure NHS services are commissioned to meet local need and to address any shortfalls in provision, taking into account best practice guidance, such as that produced by the National Institute for Health and Care Excellence.

Services for people with myalgic encephalomyelitis are commissioned by local clinical commissioning groups. It is the responsibility of the local National Health Service commissioners to ensure NHS services are commissioned to meet local need and to address any shortfalls in provision, taking into account best practice guidance, such as that produced by the National Institute for Health and Care Excellence.