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To ask the Secretary of State for Health and Social Care, whether an impact assessment has been conducted of delaying consideration of a specialised commissioned service until April 2027 on patients with Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome).
To ask the Secretary of State for Health and Social Care, whether an impact assessment has been conducted of delaying consideration of a specialised commissioned service until April 2027 on patients with Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome).
The Government published the ME/CFS Final Delivery Plan in July 2025, which is available at the following link:
https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan
The plan focuses on three main areas to improve care and support for those with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease. It also sets out a series of actions, which will help address the key challenges and drive forward improvements to outcomes and quality of life for people living with ME/CFS in England.
The Department worked closely with ME/CFS patients, carers, clinicians, charities, research funders and researchers throughout the development of the plan. This engagement has helped to shape new and more ambitious actions that deliver meaningful change for the ME/CFS community.
Due to transformation in NHS England, the decision has been made to delay the action to review a case for a specialised service commission until April 2027. Until this time, integrated care boards (ICBs) should continue to commission appropriate services for patients with very severe ME/CFS as needed. ICBs are responsible for the commissioning of services for all severity levels of ME/CFS. NHS England and the Department are developing a new template service specification for mild and moderate ME/CFS which will include reference to severe and very severe ME/CFS. Officials, alongside stakeholders, are considering interim measures to support people with very severe ME/CFS.
The Department and NHS England will continue to work with stakeholders across and beyond government and the NHS to progress the agreed actions set out in the plan and to ensure the best possible care for people with ME/CFS.
To ask the Secretary of State for Health and Social Care, to outline what interim arrangements will be put in place to ensure care and support for people with very severe ME, following the decision to pause development of a national specialist service for this group.
To ask the Secretary of State for Health and Social Care, to outline what interim arrangements will be put in place to ensure care and support for people with very severe ME, following the decision to pause development of a national specialist service for this group.
The Government published the ME/CFS Final Delivery Plan in July 2025, which is available at the following link:
https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan
The plan focuses on three main areas to improve care and support for those with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease. It also sets out a series of actions, which will help address the key challenges and drive forward improvements to outcomes and quality of life for people living with ME/CFS in England.
The Department worked closely with ME/CFS patients, carers, clinicians, charities, research funders and researchers throughout the development of the plan. This engagement has helped to shape new and more ambitious actions that deliver meaningful change for the ME/CFS community.
Due to transformation in NHS England, the decision has been made to delay the action to review a case for a specialised service commission until April 2027. Until this time, integrated care boards (ICBs) should continue to commission appropriate services for patients with very severe ME/CFS as needed. ICBs are responsible for the commissioning of services for all severity levels of ME/CFS. NHS England and the Department are developing a new template service specification for mild and moderate ME/CFS which will include reference to severe and very severe ME/CFS. Officials, alongside stakeholders, are considering interim measures to support people with very severe ME/CFS.
The Department and NHS England will continue to work with stakeholders across and beyond government and the NHS to progress the agreed actions set out in the plan and to ensure the best possible care for people with ME/CFS.
To ask the Secretary of State for Health and Social Care, if his Department will engage with the ME community to develop an interim plan for supporting people with very severe ME until suitable long-term provision is in place nationally.
To ask the Secretary of State for Health and Social Care, if his Department will engage with the ME community to develop an interim plan for supporting people with very severe ME until suitable long-term provision is in place nationally.
The Government published the ME/CFS Final Delivery Plan in July 2025, which is available at the following link:
https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan
The plan focuses on three main areas to improve care and support for those with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease. It also sets out a series of actions, which will help address the key challenges and drive forward improvements to outcomes and quality of life for people living with ME/CFS in England.
The Department worked closely with ME/CFS patients, carers, clinicians, charities, research funders and researchers throughout the development of the plan. This engagement has helped to shape new and more ambitious actions that deliver meaningful change for the ME/CFS community.
Due to transformation in NHS England, the decision has been made to delay the action to review a case for a specialised service commission until April 2027. Until this time, integrated care boards (ICBs) should continue to commission appropriate services for patients with very severe ME/CFS as needed. ICBs are responsible for the commissioning of services for all severity levels of ME/CFS. NHS England and the Department are developing a new template service specification for mild and moderate ME/CFS which will include reference to severe and very severe ME/CFS. Officials, alongside stakeholders, are considering interim measures to support people with very severe ME/CFS.
The Department and NHS England will continue to work with stakeholders across and beyond government and the NHS to progress the agreed actions set out in the plan and to ensure the best possible care for people with ME/CFS.
To ask the Secretary of State for Health and Social Care, what steps he is taking to support people with very severe ME following the decision to pause development of a national specialist service until April 2027.
To ask the Secretary of State for Health and Social Care, what steps he is taking to support people with very severe ME following the decision to pause development of a national specialist service until April 2027.
The Government published the ME/CFS Final Delivery Plan in July 2025, which is available at the following link:
https://www.gov.uk/government/publications/mecfs-the-final-delivery-plan
The plan focuses on three main areas to improve care and support for those with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease. It also sets out a series of actions, which will help address the key challenges and drive forward improvements to outcomes and quality of life for people living with ME/CFS in England.
The Department worked closely with ME/CFS patients, carers, clinicians, charities, research funders and researchers throughout the development of the plan. This engagement has helped to shape new and more ambitious actions that deliver meaningful change for the ME/CFS community.
Due to transformation in NHS England, the decision has been made to delay the action to review a case for a specialised service commission until April 2027. Until this time, integrated care boards (ICBs) should continue to commission appropriate services for patients with very severe ME/CFS as needed. ICBs are responsible for the commissioning of services for all severity levels of ME/CFS. NHS England and the Department are developing a new template service specification for mild and moderate ME/CFS which will include reference to severe and very severe ME/CFS. Officials, alongside stakeholders, are considering interim measures to support people with very severe ME/CFS.
The Department and NHS England will continue to work with stakeholders across and beyond government and the NHS to progress the agreed actions set out in the plan and to ensure the best possible care for people with ME/CFS.
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support people with severe Myalgic encephalomyelitis in the context of delays to the consideration of a specialised service for people with very severe Myalgic encephalomyelitis and Chronic Fatigue Syndrome.
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support people with severe Myalgic encephalomyelitis in the context of delays to the consideration of a specialised service for people with very severe Myalgic encephalomyelitis and Chronic Fatigue Syndrome.
Officials in the Department and NHS England, together with stakeholders, are currently considering interim measures to support patients with very severe myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).
Officials have considered the impact of the abolition of NHS England and the changes to integrated care boards (ICBs) on the actions within the final delivery plan on ME/CFS from July 2025.
To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential impacts of a) the abolition of NHS England and b) changes to ICBs on the final delivery plan for myalgic encephalomyelitis/chronic fatigue syndrome.
To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential impacts of a) the abolition of NHS England and b) changes to ICBs on the final delivery plan for myalgic encephalomyelitis/chronic fatigue syndrome.
Officials in the Department and NHS England, together with stakeholders, are currently considering interim measures to support patients with very severe myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).
Officials have considered the impact of the abolition of NHS England and the changes to integrated care boards (ICBs) on the actions within the final delivery plan on ME/CFS from July 2025.
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure integrated care boards are accountable for commissioning effective services for patients with very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome until the nationally commissioned specialised service is introduced.
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure integrated care boards are accountable for commissioning effective services for patients with very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome until the nationally commissioned specialised service is introduced.
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.
To ask the Secretary of State for Health and Social Care, for what reason the action relating to a specialised service for patients with very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was included in the Final Delivery Plan without full consideration of system constraints affecting its implementation.
To ask the Secretary of State for Health and Social Care, for what reason the action relating to a specialised service for patients with very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was included in the Final Delivery Plan without full consideration of system constraints affecting its implementation.
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.
To ask the Secretary of State for Health and Social Care, for what reason planning for a specialised service for very severe ME/CFS has been paused until April 2027.
To ask the Secretary of State for Health and Social Care, for what reason planning for a specialised service for very severe ME/CFS has been paused until April 2027.
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.
To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of progress on the establishment of a specialised NHS service for people with very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, including timelines, funding arrangements and decision-making criteria.
To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of progress on the establishment of a specialised NHS service for people with very severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, including timelines, funding arrangements and decision-making criteria.
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.
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to help ensure that integrated care boards are held accountable for commissioning services for those with very severe ME/CFS the absence of a national specialised service.
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to help ensure that integrated care boards are held accountable for commissioning services for those with very severe ME/CFS the absence of a national specialised service.
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
To ask the Secretary of State for Health and Social Care, what funding his Department is providing for research into the genetic differences between people with myalgic encephalomyelitis and those without the condition.
To ask the Secretary of State for Health and Social Care, what funding his Department is providing for research into the genetic differences between people with myalgic encephalomyelitis and those without the condition.
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.
To ask the Secretary of State for Health and Social Care, what discussions his Department has had since the publication of the Final Delivery Plan for ME/CFS regarding the commissioning of a specialised service for people with very severe ME/CFS.
To ask the Secretary of State for Health and Social Care, what discussions his Department has had since the publication of the Final Delivery Plan for ME/CFS regarding the commissioning of a specialised service for people with very 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.
To ask the Secretary of State for Health and Social Care, if the Department can outline how many NHS outpatient services for ME/CFS are currently operational in England, and how many of these accept referrals for patients with severe or very severe ME/CFS.
To ask the Secretary of State for Health and Social Care, if the Department can outline how many NHS outpatient services for ME/CFS are currently operational in England, and how many of these accept referrals for patients with severe or very 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.
To ask the Secretary of State for Health and Social Care, what steps he is taking to support people with myalgic encephalomyelitis.
To ask the Secretary of State for Health and Social Care, what steps he is taking to support people with myalgic encephalomyelitis.
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.
To ask the Secretary of State for Health and Social Care, if he will require that healthcare professionals involved in the care of people with very severe ME complete condition-specific (a) training and (b) e-learning.
To ask the Secretary of State for Health and Social Care, if he will require that healthcare professionals involved in the care of people with very severe ME complete condition-specific (a) training and (b) e-learning.
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.
To ask the Secretary of State for Science, Innovation and Technology, what steps her Department is taking to support research into myalgic encephalomyelitis.
To ask the Secretary of State for Science, Innovation and Technology, what steps her Department is taking to support research into myalgic encephalomyelitis.
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.
To ask the Secretary of State for Health and Social Care, what proportion of people diagnosed with Myalgic Encephalomyelitis who applied for NHS Continuing Healthcare funding were (a) assessed as eligible following a Decision Support Tool assessment and (b) refused following a Decision Support Tool assessment in each of the...
To ask the Secretary of State for Health and Social Care, what proportion of people diagnosed with Myalgic Encephalomyelitis who applied for NHS Continuing Healthcare funding were (a) assessed as eligible following a Decision Support Tool assessment and (b) refused following a Decision Support Tool assessment in each of the...
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.
To ask the Secretary of State for Health and Social Care, when his Department's proposed timeline is for announcing its decision on the prescription of a specialised service for Very Severe ME/CFS.
To ask the Secretary of State for Health and Social Care, when his Department's proposed timeline is for announcing its decision on the prescription of a specialised service for Very Severe ME/CFS.
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
To ask the Secretary of State for Health and Social Care, what plans his Department has made to address the health needs of those classified with severe ME/CFS while exploring the specialised very severe ME/CFS service.
To ask the Secretary of State for Health and Social Care, what plans his Department has made to address the health needs of those classified with severe ME/CFS while exploring the specialised very severe ME/CFS service.
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