Integrated care boards (ICBs) are responsible for the commissioning of specialised services that meet the needs of their local populations. ICBs are expected to commission services in line with National Health Service expectations of care. NHS England supports ICBs through statutory guidance, service specifications, and the Strategic Commissioning Framework, but decisions on commissioning and service configuration ultimately rest with individual ICBs, based on local need. This is also the case for the commissioning of services for all levels of severity of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).

The action within July 2025’s final delivery plan on ME/CFS, to consider whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS has been delayed until April 2027.

Officials in the Department and NHS England are currently considering, along with ME/CFS stakeholders, interim measures to support patients with very severe ME/CFS, including referencing severe and very severe ME/CFS in a new template service specification for mild and moderate ME/CFS.

Integrated care boards (ICBs) are responsible for the commissioning of specialised services that meet the needs of their local populations. ICBs are expected to commission services in line with National Health Service expectations of care. NHS England supports ICBs through statutory guidance, service specifications, and the Strategic Commissioning Framework, but decisions on commissioning and service configuration ultimately rest with individual ICBs, based on local need. This is also the case for the commissioning of services for all levels of severity of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).

The action within July 2025’s final delivery plan on ME/CFS, to consider whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS has been delayed until April 2027.

Officials in the Department and NHS England are currently considering, along with ME/CFS stakeholders, interim measures to support patients with very severe ME/CFS, including referencing severe and very severe ME/CFS in a new template service specification for mild and moderate ME/CFS.

The action within July 2025’s final delivery plan on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), to consider whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS has been delayed until April 2027.

Officials in the Department and NHS England are currently considering, alongside ME/CFS stakeholders, interim measures to support patients with very severe ME/CFS.

The action within July 2025’s final delivery plan on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), to consider whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS has been delayed until April 2027.

Officials in the Department and NHS England are currently considering, alongside ME/CFS stakeholders, interim measures to support patients with very severe ME/CFS.

Integrated care boards (ICBs) are expected to commission services for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) across all levels of severity, including those with severe and very severe ME/CFS, in line with national standards, service specifications and clinical access policies set by NHS England. Prioritisation and funding remain at the discretion of ICBs.

Officials have begun work to develop a template service specification for mild and moderate ME/CFS. This template will provide best practice examples to guide the commissioning of services for ME/CFS and will now include reference to severe ME/CFS as an interim support measure.

To help support healthcare professionals in the diagnosis and management of ME/CFS, the Department has worked with NHS England to develop an e-learning programme for healthcare professionals. All four sessions of the e‑learning programme are now available, with sessions one, two and three having universal access, while the fourth session, which focuses on the management of severe ME/CFS, is only available to healthcare professionals. The e-learning is available at the following link: https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288

The National Institute for Health and Care Research and the Medical Research Council have dedicated £3.2 million to the DecodeME study. This study aims to understand the genetic differences between those who have myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and those who do not, and in doing so increase our understanding of ME/CFS to support the development of diagnostic tests and targeted treatments. Preliminary findings from DecodeME indicate genetic differences in eight areas linked to the immune and nervous systems in people with ME/CFS. This discovery of specific genetic signals may help us understand the biological pathways involved in ME/CFS in the future.

Our ME/CFS Final Delivery Plan, published in July 2025, includes an action for the Department of Health and Social Care and NHS England to explore whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The third and final session in NHS England’s ME/CFS e-learning series, Managing Severe ME/CFS, is now live on the NHS Learning Hub. This session provides practical, evidence-based guidance to support people living with severe and very severe ME/CFS, and has universal access. There is also an additional version of this module, which is only available to healthcare professionals, and includes clinical guidance on severe and very severe ME/CFS.

NHS England has already started its work on co-designing resources, including a ‘template service specification’ for mild/moderate ME/CFS services, to support systems to improve services for mild and moderate ME/CFS. NHS England and the Department of Health and Social Care have met with a group of key stakeholders to move this work on. This template will now include reference to severe ME/CFS.

Our ME/CFS Final Delivery Plan, published in July 2025, includes an action for the Department of Health and Social Care and NHS England to explore whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The third and final session in NHS England’s ME/CFS e-learning series, Managing Severe ME/CFS, is now live on the NHS Learning Hub. This session provides practical, evidence-based guidance to support people living with severe and very severe ME/CFS, and has universal access. There is also an additional version of this module, which is only available to healthcare professionals, and includes clinical guidance on severe and very severe ME/CFS.

NHS England has already started its work on co-designing resources, including a ‘template service specification’ for mild/moderate ME/CFS services, to support systems to improve services for mild and moderate ME/CFS. NHS England and the Department of Health and Social Care have met with a group of key stakeholders to move this work on. This template will now include reference to severe ME/CFS.

As part of the final delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), that was published in July 2025, the Government committed to supporting people with ME/CFS. The plan focuses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

We are developing a template service specification for mild and moderate ME/CFS, in conjunction with NHS England. The template will set out examples of best practice for the commissioning of services for ME/CFS to ensure consistent and high-quality care across integrated care boards. The Department, together with ForwardME, is developing a Language Matters Guide to accompany this to ensure that terminology is consistent and well understood.

To help support healthcare professionals in the diagnosis and management of ME/CFS, the Department has worked with NHS England to develop an e-learning programme for healthcare professionals. All sessions of the e-learning programme, with sessions one, two, and three having universal access, whilst the final session on managing severe ME/CFS being only available to healthcare professionals, are now available at the following link:

https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288.

NHS England, with support from the Department, has developed an e-learning programme to support healthcare professionals in the care of people with myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), of all levels of severity. All four sessions of the e-learning programme are now available, with sessions one, two, and three having universal access, whilst the fourth session, which includes support and clinical management of severe ME/CFS, is only available to healthcare professionals. Further information can be found at the following link:

https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288

The Medical Schools Council will promote the e-learning programme to all United Kingdom medical schools and will encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS.

Additionally, the National Institute for Health and Care Excellence (NICE) has developed guidance on the diagnosis and management of ME/CFS, including mental health support for people with ME/CFS and their families. NICE guidelines are evidence-based, informed by clinical expertise, and represent best practice, and although NICE guidelines are not mandatory, healthcare professionals are expected to take them fully into account.

UK Research and Innovation’s (UKRI) Medical Research Council (MRC) has prioritised research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, investing over £4.65 million since 2020.

MRC is working with the Department of Health and Social Care (DHSC) and the National Institute for Health and Care Research (NIHR) to deliver on agreed actions from the ME/CFS Final Delivery Plan. This includes funding strategic initiatives to increase research capacity and hosting engagement events to bring together research funders, commercial and academic researchers and patient representatives.

In November 2025, DHSC, NIHR and UKRI, co-hosted a research showcase to discuss and explore the ongoing research in the fields of ME/CFS and long COVID. MRC continues to liaise with the ME/CFS research community to support future applicants.

NHS England does not collect data on the proportion of people diagnosed with myalgic encephalomyelitis who are found eligible for NHS Continuing Healthcare (CHC), or any other condition. Eligibility for CHC is not determined by diagnosis or condition, but is assessed on a case-by-case basis taking into account the totality of an individual’s needs, and whether they constitute a ‘primary health need’.

Operational delivery of CHC is the responsibility of integrated care boards (ICBs), including conducting CHC assessments using the standardised Decision Support Tool. NHS England holds ICBs to account, including through robust assurance mechanisms, to ensure they are delivering their statutory functions.

The decision will be announced in due course. At this stage, officials from the Department and NHS England have been working carefully through the steps needed to make a decision on the prescription of a specialised service for very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). My Rt. Hon. Friend, the Secretary of State for Health and Social Care, is responsible for a decision on the prescribing of specialised services, which requires consultation with NHS England.

The Department is also developing a template service specification for mild and moderate ME/CFS, which also contains references to severe ME/CFS. Further work will need to be undertaken to strengthen support for people with severe ME/CFS, reflecting that people may move between moderate and severe. Future iterations of this document will build on these ongoing considerations and emerging insights.

To support healthcare professionals in the diagnosis and management of ME/CFS, the Department has worked with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. The final module of this e-learning programme is focussed on improving understanding of severe ME/CFS in particular. All three sessions of the e-learning programme are now available at the following link:

https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288

The decision will be announced in due course. At this stage, officials from the Department and NHS England have been working carefully through the steps needed to make a decision on the prescription of a specialised service for very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). My Rt. Hon. Friend, the Secretary of State for Health and Social Care, is responsible for a decision on the prescribing of specialised services, which requires consultation with NHS England.

The Department is also developing a template service specification for mild and moderate ME/CFS, which also contains references to severe ME/CFS. Further work will need to be undertaken to strengthen support for people with severe ME/CFS, reflecting that people may move between moderate and severe. Future iterations of this document will build on these ongoing considerations and emerging insights.

To support healthcare professionals in the diagnosis and management of ME/CFS, the Department has worked with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. The final module of this e-learning programme is focussed on improving understanding of severe ME/CFS in particular. All three sessions of the e-learning programme are now available at the following link:

https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288

The myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), final delivery plan, published on 22 July 2025, includes an action for the Department and NHS England to explore whether a specialised service should be prescribed by my Rt Hon. Friend, the Secretary of State for Health and Social Care, for very severe ME/CFS. Officials from the Department have commenced discussions with NHS England on how best to take forward this action.

Three factors determine whether a service is a prescribed specialised service. These are: the number of individuals who require the service; the cost of providing the service or facility; and the number of people able to provide the service or facility.

The Department is currently developing a template service specification for mild and moderate myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), which also references severe ME/CFS. Further work will need to be undertaken to strengthen support for people with severe ME/CFS, reflecting that people may move between moderate and severe. Future iterations of this document will build on ongoing considerations and emerging insights of severe and very severe ME/CFS.

Departmental and NHS England officials have been working carefully through the steps needed to make a decision on the prescription of a specialised service for very severe ME/CFS. My Rt Hon. Friend, the Secretary of State for Health and Social Care, is responsible for a decision on the prescribing of specialised services, which requires consultation with NHS England.

To support healthcare professionals in the diagnosis and management of ME/CFS, the Department has worked with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals. The final module of this e-learning programme is focussed on managing severe ME/CFS.

Additionally, as set out in the Plan for Change, we are committed to returning to the National Health Service constitutional standard that 92% of patients wait no longer than 18 weeks from referral to consultant-led treatment by March 2029. We delivered 5.2 million additional appointments between July 2024 and June 2025. This will help people with severe ME/CFS to get support sooner. The Plan for Change is available at the following link:

https://www.gov.uk/missions

The 10-Year Health Plan sets out a transformed vision for elective care by 2035, where most interactions no longer take place in a hospital building, instead happening virtually or via neighbourhood services. This will enable patients with severe or very severe ME/CFS who are housebound or bedbound to access support more easily.

Each action in the final delivery plan on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), has a designated lead department or organisation, with the Department of Health and Social Care being ultimately responsible for overseeing the delivery of the plan as a whole, including holding other organisations to account for delivering actions.

At this stage, Department and NHS England officials have been working carefully through the steps needed to make a decision on the prescription of a specialised service for very severe ME/CFS. My Rt Hon. Friend, the Secretary of State for Health and Social Care, is responsible for a decision on the prescribing of specialised services, which requires consultation with NHS England.

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a medically recognised condition associated with a range of disabling effects which depend upon the severity of the condition.

All Health Professionals (HPs) receive comprehensive training in disability analysis, including how to assess the impacts of medical conditions on claimant’s day-to-day activities, as well as awareness training in a range of conditions, symptoms and disabilities. HPs have access to a wide range of Core Training and Guidance Material (CTGM). These resources offer detailed clinical and functional information, including the potential risks and limitations of a range of conditions, such as ME/CFS, to support HPs in delivering informed assessments. All core training and guidance materials are quality assured to ensure their accuracy from both a clinical and policy perspective.

In addition, the Personal Independence Payment (PIP) criteria consider an individual’s ability over a 12-month period, ensuring that fluctuations are considered. It is essential for the assessment to accurately reflect the impact of variations in an individual's level of impairment, this is important for all health conditions, not only those which more typically fluctuate. For each activity, if a descriptor applies on more than 50 per cent of the days in the 12-month period, that descriptor should be chosen. In general, HPs should record function over an average year for conditions that fluctuate over months, per week for conditions that fluctuate by the day, and by the day for conditions that vary over a day.

The Medical Research Council (MRC), which is part of UK Research and Innovation (UKRI), has prioritised research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, investing over £4.65 million since 2020, and welcomes high quality applications in this area.

MRC is working with the Department for Health and Social Care (DHSC) and the National Institute for Health and Care Research (NIHR) to deliver on agreed actions from the ME/CFS Final Delivery Plan. This includes funding strategic initiatives to increase research capacity and hosting engagement events to bring together research funders, commercial and academic researchers and patient representatives. For example, in November DHSC, NIHR and UKRI, co-hosted a research showcase to discuss and explore the ongoing research in the fields of ME/CFS and long COVID. MRC continues to liaise with the ME/CFS research community to support future applicants.

The Department does not intend to commission a specific comparative review into the relative level of National Institute for Health and Care Research (NIHR) or Medical Research Council funding for research into myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), compared with other long-term conditions. We recognise that ME/CFS is an under-researched area, and we are committed to working with the ME/CFS community to identify and address barriers to research, with the ambition of supporting and funding more research and capacity-building programmes.

As outlined in the ME/CFS Final Delivery Plan, there has historically been a relatively low amount of biomedical research funded on ME/CFS, compared with disease burden. Our efforts are focussed on delivering the actions outlined in the ME/CFS Final Delivery Plan to support and increase research in this area. Since our answer to Question 86003, we have hosted a showcase on post‑acute infection conditions, bringing together people with lived experience, researchers, clinicians, and funders to stimulate further research. A summary of this showcase has been published on NIHR Open Research. We have also made progress with our new funding opportunity for development awards focussed on the feasibility of a phase 2 platform clinical trial. This would test multiple repurposed pharmaceutical interventions and/or non-pharmacological interventions for the treatment of post-viral conditions including ME/CFS. The committee will now consider the applications, and shortlisting decisions will be shared with the researchers in March.