Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government how the template service specification for mild and moderate myalgic encephalomyelitis (ME) will address the needs of people with severe and very severe ME; and whether a separate specification will be developed for those groups.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what guidance they have issued to integrated care boards about commissioning appropriate provision for patients with myalgic encephalomyelitis/chronic fatigue syndrome before specialist services are established.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what guidance is in place for hospitals, community services and integrated care boards about the care and management of people with severe and very severe myalgic encephalomyelitis; and how compliance with the guidance is monitored.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what interim measures they plan to put in place to support people with severe and very severe myalgic encephalomyelitis following the delay to the establishment of specialist services.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what discussions they have had with life sciences sector organisations about accelerating research into myalgic encephalomyelitis; and what steps they plan to take to support that work by 2027.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government how people with lived experience of myalgic encephalomyelitis will be involved in the design and delivery of the awareness campaign.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of the availability of dietitians with a special interest in chronic fatigue syndrome, and how many of those dietitians there are in England.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
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
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment criteria they are using to assess the case for commissioning a specialised service for very severe chronic fatigue syndrome.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to ensure that hospital and community services effectively prevent and manage malnutrition among people with severe and very severe myalgic encephalomyelitis in England.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of the adequacy of NHS care for patients in England with severe and very severe myalgic encephalomyelitis; and what steps they are taking to improve it.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
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.