As part of the development of the template service specification for mild and moderate myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), which was committed to in the final delivery plan on ME/CFS, published in July 2025, officials have engaged with a sub-group of the ME/CFS post-publication stakeholder engagement group. As part of this engagement, officials from the Department, together with NHS England, have made the decision to include reference to severe ME/CFS in that template service specification based on feedback received from this group. It will also include a reminder that integrated care boards are expected to commission services that meet the needs of the local population, including for all levels of severity of ME/CFS.

There are currently no plans to develop a separate specification for severe and very severe ME/CFS.

There has not been a specific assessment of whether the current strategic prioritisation of research into myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), is proportionate to the disease burden. As outlined in the ME/CFS Final Delivery Plan, published in July 2025, there has historically been a relatively low amount of research funded on ME/CFS, compared with disease burden. We are implementing the ME/CFS Final Delivery Plan to expand research activity, and there are no plans to revise this approach.

The Department funds research through the National Institute for Health and Care Research (NIHR). Since the publication of the delivery plan, 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 the NIHR Open Research. The NIHR has awarded two application development awards to investigate the feasibility of a new clinical trial that tests multiple interventions for the treatment of post-acute infection syndromes, including Long Covid and ME/CFS.

In addition, we recently announced £4.75 million of Government funding for SequenceME, which will carry out whole genome sequencing for up to 6,000 patients with ME/CFS. The NIHR welcomes research into any aspect of health and care, including ME/CFS. Applications are subject to peer review and judged in open competition, with awards made on the basis of the importance of the topic to patients and health and care services, including how the research addresses evidence gaps, value for money, and scientific quality.

Officials in the Department and NHS England, together with stakeholders, are currently considering interim measures to support patients with very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This is ahead of my Rt Hon. Friend, the Secretary of State for Health and Social Care, considering whether a specialised service should be prescribed for very severe ME/CFS.

These measures include referencing severe and very severe ME/CFS in a new template service specification that is being developed for mild and moderate ME/CFS. This template service specification, therefore, aims to provide support for ME/CFS service providers and commissioners to improve care and support for people living with all levels of severity of ME/CFS.

Integrated care boards (ICBs) are expected to commission services for people with 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.

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. Although NICE guidelines are not mandatory, so ICBs are not routinely monitored on their compliance, healthcare professionals are expected to take them fully into account.

NHS England, with support from the Department, has developed an e-learning programme to support healthcare professionals in the care of people with 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 is available on the NHS.UK website. As the e-learning programme is not mandatory, take-up at healthcare professional level is not routinely monitored.

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.

Officials in the Department and NHS England, together with stakeholders, are currently considering interim measures to support patients with very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This is ahead of my Rt Hon. Friend, the Secretary of State for Health and Social Care, considering whether a specialised service should be prescribed for very severe ME/CFS.

These measures include referencing severe and very severe ME/CFS in a new template service specification that is being developed for mild and moderate ME/CFS. This template service specification, therefore, aims to provide support for ME/CFS service providers and commissioners to improve care and support for people living with all levels of severity of ME/CFS.

Integrated care boards (ICBs) are expected to commission services for people with 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.

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. Although NICE guidelines are not mandatory, so ICBs are not routinely monitored on their compliance, healthcare professionals are expected to take them fully into account.

NHS England, with support from the Department, has developed an e-learning programme to support healthcare professionals in the care of people with 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 is available on the NHS.UK website. As the e-learning programme is not mandatory, take-up at healthcare professional level is not routinely monitored.

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.

Officials in the Department and NHS England, together with stakeholders, are currently considering interim measures to support patients with very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This is ahead of my Rt Hon. Friend, the Secretary of State for Health and Social Care, considering whether a specialised service should be prescribed for very severe ME/CFS.

These measures include referencing severe and very severe ME/CFS in a new template service specification that is being developed for mild and moderate ME/CFS. This template service specification, therefore, aims to provide support for ME/CFS service providers and commissioners to improve care and support for people living with all levels of severity of ME/CFS.

Integrated care boards (ICBs) are expected to commission services for people with 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.

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. Although NICE guidelines are not mandatory, so ICBs are not routinely monitored on their compliance, healthcare professionals are expected to take them fully into account.

NHS England, with support from the Department, has developed an e-learning programme to support healthcare professionals in the care of people with 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 is available on the NHS.UK website. As the e-learning programme is not mandatory, take-up at healthcare professional level is not routinely monitored.

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.

The Government is committed to funding high-quality research to understand the causes, consequences, and treatment of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). We recognise the value of collaborating across the life sciences sector to deliver the most impactful research. The Department funds research through the National Institute for Health and Care Research (NIHR).

The Government has outlined its approach to supporting research into ME/CFS in the Final Delivery Plan, published in July 2025. Since this was published, the NIHR and the Medical Research Council (MRC) has hosted a showcase on post-acute infection conditions, bringing together people with lived experience, researchers, clinicians, funders, and the life sciences sector to stimulate further research.

Recently, £4.75 million of Government funding has been invested in SequenceME, which will carry out whole genome sequencing for up to 6,000 patients with ME/CFS. SequenceME brings together the University of Edinburgh, Action for ME, the European Bioinformatics Institute, and Oxford Nanopore Technologies, demonstrating the value of collaboration across the life sciences sector. We hope that this study will build a high-resolution genetic map of ME/CFS, paving the way for better diagnostics, including biomarkers, and future treatments. SequenceME builds on the £3.2 million investment from the NIHR and MRC in DecodeME.

Officials from the Department are engaging directly with a number of stakeholders, including representatives with lived experience of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and representatives from patient groups and charities, in the development of the awareness campaign. These stakeholders are members of the ME/CFS post-publication stakeholder engagement group, formerly the Task and Finish Group. Officials, together with these stakeholders, are considering the most effective options in the design and delivery of this campaign.

The Department does not hold information on the number of dieticians who hold specialist knowledge or experience relating to chronic fatigue syndrome (CFS).

NHS England publishes monthly Hospital and Community Health Services workforce statistics, with the data is drawn from the Electronic Staff Record, which is the payroll and human resources system for the National Health Service. This means it allows for identification of staff by broad staffing groups, including dieticians, working in Hospital and Community Health Services, but it does not provide the level of detail needed to identify staff with the skills, knowledge or experience of working with patients with specific conditions or allow identification of the types of patients and service delivery areas that staff may be involved in on a day to day basis. The latest data is available at the following link:

https://digital.nhs.uk/data-and-information/publications/statistical/nhs-workforce-statistics

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.

We published the final delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), on 22 July, which focuses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

The commissioning of ME/CFS services is the responsibility of local integrated care boards based on the needs of their local population. The ME/CFS Final Delivery Plan 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.

To support healthcare professionals in the diagnosis and management of conditions like ME/CFS, the National Institute for Health and Care Excellence (NICE) published guidance for ME/CFS in October 2021, a copy of which is attached.

It recommends that people with ME/CFS should be referred for a dietetic assessment by a dietitian with a special interest in ME/CFS if they are losing weight and at risk of malnutrition. The guidance also states that clinicians should recognise that symptoms of severe and very severe ME/CFS may mean that people are unable to eat and digest food easily and may need support with hydration and nutrition, and that the support provided could include oral nutrition and enteral feeding.

NICE guidelines are evidence-based, informed by clinical expertise, and represent best practice. Although NICE guidelines are not mandatory, healthcare professionals are expected to take them fully into account.

We published the final delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), on 22 July, which focuses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

The commissioning of ME/CFS services is the responsibility of local integrated care boards based on the needs of their local population. The ME/CFS Final Delivery Plan 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.

To support healthcare professionals in the diagnosis and management of conditions like ME/CFS, the National Institute for Health and Care Excellence (NICE) published guidance for ME/CFS in October 2021, a copy of which is attached.

It recommends that people with ME/CFS should be referred for a dietetic assessment by a dietitian with a special interest in ME/CFS if they are losing weight and at risk of malnutrition. The guidance also states that clinicians should recognise that symptoms of severe and very severe ME/CFS may mean that people are unable to eat and digest food easily and may need support with hydration and nutrition, and that the support provided could include oral nutrition and enteral feeding.

NICE guidelines are evidence-based, informed by clinical expertise, and represent best practice. Although NICE guidelines are not mandatory, healthcare professionals are expected to take them fully into account.

The content of the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), delivery plan has not yet been finalised. The responses to the 2023 interim delivery plan consultation, along with continued close engagement with stakeholders, will inform the development of the final ME/CFS delivery plan, which we aim to publish by the end of March. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

To support this, we have reconvened the ME/CFS Task and Finish Group, including senior Department and cross-Government officials, ME/CFS specialists, and representatives from NHS England, the National Institute for Health and Care Excellence, the devolved administrations, and ME/CFS charities and organisations, in the development of the final delivery plan for ME/CFS.

A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.

No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.

It is not usual practice for the NIHR to ring-fence funds for particular topics or conditions. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS and long COVID. These 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.

A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.

No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.

It is not usual practice for the NIHR to ring-fence funds for particular topics or conditions. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS and long COVID. These 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.

A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.

No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.

It is not usual practice for the NIHR to ring-fence funds for particular topics or conditions. The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS and long COVID. These 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.