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.
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 plans they have, if any, to introduce a goal of 100 percent compliance by 2028 with the 2021 NICE guideline on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), as part of their delivery plan for ME/CFS.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
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, further to the Written Statement by the Secretary of State for Health and Social Care on 12 May 2022 (HCWS23), whether the cross-Government delivery plan for myalgic encephalomyelitis (ME)/chronic fatigue syndrome will include provision for hospital treatment and full consideration of how to safely prevent malnutrition in very severe ME.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
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, further to the Written Statement by the Secretary of State for Health and Social Care on 12 May 2022 (HCWS23), what plans are in plans to publish the cross-Government delivery plan for myalgic encephalomyelitis/chronic fatigue syndrome.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
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 percentage of the research budget allocated for myalgic encephalomyelitis and Long Covid, and whether they plan to increase this amount.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
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 hospital compliance with National Institute for Health and Care Excellence guidelines for the treatment of inpatients with severe myalgic encephalomyelitis.
Answered by Lord Markham - Shadow Minister (Science, Innovation and Technology)
The National Institute for Health and Care Excellence’s (NICE) guideline, Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management, published in October 2021, outlines the expectations for inpatient care for patients with severe myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), who require hospitalisation.
The National Health Service commissions services across England that provide support for people living with ME. In October 2023, the British Association of Clinicians in ME/CFS published the ME/CFS National Services Survey 2023. This report provides insight into the services being delivered for adults, children, and young people with ME.
No assessment has been made of the extent of hospital compliance with the NICE guidelines on ME. It is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. Whilst guidelines are not mandatory, clinicians and commissioners are expected to take them fully into account when designing services that meet the needs of their local population. The NICE promotes its guidance via its website, newsletters, and other media.
The Department is working with NHS England to develop an e-learning course on ME for healthcare professionals, with the aim of supporting staff to be able to provide better care, and improve patient outcomes. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage those schools to provide undergraduates with direct patient experience of ME.
Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT) is used in the NHS to ensure accurate coding of medical conditions, including ME, in both primary and secondary care records. Within SNOMED CT, all content for ME is contained within a single overarching code, with linked codes for mild, moderate, and severe forms. These can be used by all NHS healthcare providers, including general practitioners. It is estimated that there are over 250,000 people in England and Wales with ME.
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 accurate coding of a diagnosis of myalgic encephalomyelitis on both primary and secondary care records.
Answered by Lord Markham - Shadow Minister (Science, Innovation and Technology)
The National Institute for Health and Care Excellence’s (NICE) guideline, Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management, published in October 2021, outlines the expectations for inpatient care for patients with severe myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), who require hospitalisation.
The National Health Service commissions services across England that provide support for people living with ME. In October 2023, the British Association of Clinicians in ME/CFS published the ME/CFS National Services Survey 2023. This report provides insight into the services being delivered for adults, children, and young people with ME.
No assessment has been made of the extent of hospital compliance with the NICE guidelines on ME. It is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. Whilst guidelines are not mandatory, clinicians and commissioners are expected to take them fully into account when designing services that meet the needs of their local population. The NICE promotes its guidance via its website, newsletters, and other media.
The Department is working with NHS England to develop an e-learning course on ME for healthcare professionals, with the aim of supporting staff to be able to provide better care, and improve patient outcomes. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage those schools to provide undergraduates with direct patient experience of ME.
Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT) is used in the NHS to ensure accurate coding of medical conditions, including ME, in both primary and secondary care records. Within SNOMED CT, all content for ME is contained within a single overarching code, with linked codes for mild, moderate, and severe forms. These can be used by all NHS healthcare providers, including general practitioners. It is estimated that there are over 250,000 people in England and Wales with ME.
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 develop a pathway of care for people with severe myalgic encephalomyelitis who require hospitalisation.
Answered by Lord Markham - Shadow Minister (Science, Innovation and Technology)
The National Institute for Health and Care Excellence’s (NICE) guideline, Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management, published in October 2021, outlines the expectations for inpatient care for patients with severe myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), who require hospitalisation.
The National Health Service commissions services across England that provide support for people living with ME. In October 2023, the British Association of Clinicians in ME/CFS published the ME/CFS National Services Survey 2023. This report provides insight into the services being delivered for adults, children, and young people with ME.
No assessment has been made of the extent of hospital compliance with the NICE guidelines on ME. It is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. Whilst guidelines are not mandatory, clinicians and commissioners are expected to take them fully into account when designing services that meet the needs of their local population. The NICE promotes its guidance via its website, newsletters, and other media.
The Department is working with NHS England to develop an e-learning course on ME for healthcare professionals, with the aim of supporting staff to be able to provide better care, and improve patient outcomes. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage those schools to provide undergraduates with direct patient experience of ME.
Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT) is used in the NHS to ensure accurate coding of medical conditions, including ME, in both primary and secondary care records. Within SNOMED CT, all content for ME is contained within a single overarching code, with linked codes for mild, moderate, and severe forms. These can be used by all NHS healthcare providers, including general practitioners. It is estimated that there are over 250,000 people in England and Wales with ME.