Asked by: Laura Kyrke-Smith (Labour - Aylesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to put in place a long term funding strategy for research into Myalgic Encephalomyelitis.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
As set out in the Government’s final delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS) that was published in July 2025, the Department has taken action to strengthen research capacity and capability for ME/CFS to support the long-term future of the research field.
These actions include hosting a research showcase event, a new development award to evaluate repurposed pharmaceutical interventions, and announcing newly funded studies in health and care services, research infrastructure, and capacity-building.
We are determined to accelerate progress in the treatment and management of ME/CFS and will continue working with the community to identify and address barriers to research.
The Department funded National Institute for Health and Care Research welcomes funding applications for research into any aspect of human health and care, including ME/CFS.
Asked by: Laura Kyrke-Smith (Labour - Aylesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure consistent application of NICE guidelines across Integrated Care Boards for the diagnosis and access to specialist care for the treatment of ME/Chronic Fatigue Syndrome.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
National Institute for Health and Care Excellence (NICE) guidelines are evidence-based, informed by clinical expertise, and represent best practice. Healthcare professionals and integrated care board (ICB) commissioners are expected to take NICE guidelines fully into account when designing and delivering services, including for the diagnosis and treatment of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). NHS England ensures that ICBs follow NICE guidance through a combination of statutory oversight frameworks, annual performance assessments, and local clinical governance requirements.
We published the final ME/CFS 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 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.
Asked by: Rachael Maskell (Labour (Co-op) - York Central)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 10 December 2025 to Question 95676, whether his Department has conducted any evaluation of patient safety risks affecting people with severe and very severe ME/CFS, including malnutrition.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Patient safety risks affecting people with severe and very severe myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), including malnutrition, have been considered during the development of the final delivery plan (FDP) published in July this year, through engagement with stakeholders, including clinicians and patient groups.
To this end, the FDP 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.
Asked by: Alison Hume (Labour - Scarborough and Whitby)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department will be assessing the impact of new developments in Myalgic Encephalomyelitis and Long Covid research, such as the findings of the LOCOME project, on health policy towards those living with long term health conditions.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
On 6 November, the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC) jointly hosted a showcase event for post-acute infection conditions research, which included a review of the DecodeME research project and the PrecisionLife study on myalgic encephalomyelitis (ME) and long COVID research. PrecisionLife is leading on the LOCOME, or LOng COvid and Myalgic Encephalomyelitis Diagnostics Stratification, project. The showcase event was attended by speakers from a range of disciplines, including researchers, people with lived experience, ME charities, NIHR and MRC representatives, as well as Government officials.
The Department is always very keen to reflect newly emerging research findings in its policy-making.
Asked by: Alison Hume (Labour - Scarborough and Whitby)
Question to the Department for Science, Innovation & Technology:
To ask the Secretary of State for Science, Innovation and Technology, what plans her Department has to support the use of combinatorial genomic analysis techniques, such as those used by Precision Life to identify novel ME genetic associations, within government-funded research programmes.
Answered by Kanishka Narayan - Parliamentary Under Secretary of State (Department for Science, Innovation and Technology)
The Medical Research Council (MRC), which is part of UK Research and Innovation (UKRI), funds a broad portfolio of health research, including researcher led proposals using combinatorial genomic analysis. MRC has prioritised research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, investing over £4.65 million since 2020, and continues to welcome high quality applications in this area.
UKRI supports collaboration between Government funded bodies and private sector researchers across its councils and Innovate UK. This includes funding the LOCOME study led by Precision Life, through Innovate UK’s Advancing Precision Medicine programme, which supports the development of digital and data tools to improve diagnosis and treatment. MRC also enables academic-industry partnerships through its Industry Collaboration Framework.
UKRI does not typically maintain disease‑specific research strategies, instead providing open funding routes for the most impactful research across disciplines. Targeted work can be supported where needed. For example, in 2020, the National Institute for Health and Care Research (NIHCR), the Scottish Government and MRC funded the James Lind Alliance Priority Setting Partnership to identify ME/CFS research priorities.
Asked by: Alison Hume (Labour - Scarborough and Whitby)
Question to the Department for Science, Innovation & Technology:
To ask the Secretary of State for Science, Innovation and Technology, what plans her Department has to develop a long-term research strategy into under-researched health conditions that reflects the scale of emerging genetic evidence identified by private-sector research organisations, including Precision Life’s LOCOME study.
Answered by Kanishka Narayan - Parliamentary Under Secretary of State (Department for Science, Innovation and Technology)
The Medical Research Council (MRC), which is part of UK Research and Innovation (UKRI), funds a broad portfolio of health research, including researcher led proposals using combinatorial genomic analysis. MRC has prioritised research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, investing over £4.65 million since 2020, and continues to welcome high quality applications in this area.
UKRI supports collaboration between Government funded bodies and private sector researchers across its councils and Innovate UK. This includes funding the LOCOME study led by Precision Life, through Innovate UK’s Advancing Precision Medicine programme, which supports the development of digital and data tools to improve diagnosis and treatment. MRC also enables academic-industry partnerships through its Industry Collaboration Framework.
UKRI does not typically maintain disease‑specific research strategies, instead providing open funding routes for the most impactful research across disciplines. Targeted work can be supported where needed. For example, in 2020, the National Institute for Health and Care Research (NIHCR), the Scottish Government and MRC funded the James Lind Alliance Priority Setting Partnership to identify ME/CFS research priorities.
Asked by: Alison Hume (Labour - Scarborough and Whitby)
Question to the Department for Science, Innovation & Technology:
To ask the Secretary of State for Science, Innovation and Technology, what mechanisms are in place to support collaboration between Government-funded bodies and private-sector researchers following the identification of multiple biological pathways implicated in ME by the LOCOME study.
Answered by Kanishka Narayan - Parliamentary Under Secretary of State (Department for Science, Innovation and Technology)
The Medical Research Council (MRC), which is part of UK Research and Innovation (UKRI), funds a broad portfolio of health research, including researcher led proposals using combinatorial genomic analysis. MRC has prioritised research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, investing over £4.65 million since 2020, and continues to welcome high quality applications in this area.
UKRI supports collaboration between Government funded bodies and private sector researchers across its councils and Innovate UK. This includes funding the LOCOME study led by Precision Life, through Innovate UK’s Advancing Precision Medicine programme, which supports the development of digital and data tools to improve diagnosis and treatment. MRC also enables academic-industry partnerships through its Industry Collaboration Framework.
UKRI does not typically maintain disease‑specific research strategies, instead providing open funding routes for the most impactful research across disciplines. Targeted work can be supported where needed. For example, in 2020, the National Institute for Health and Care Research (NIHCR), the Scottish Government and MRC funded the James Lind Alliance Priority Setting Partnership to identify ME/CFS research priorities.
Asked by: Max Wilkinson (Liberal Democrat - Cheltenham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, which department is responsible for making decisions and research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) as part of the Final Delivery Plan.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department of Health and Social Care is responsible for the overall delivery of the final delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The Department funds research through the National Institute for Health and Care Research (NIHR).
To address the breadth of the ME/CFS research challenge, the NIHR and the Medical Research Council (MRC), part of UK Research and Innovation, play complementary roles in the United Kingdom landscape by funding research across the research system, with MRC funding aetiological and early-stage translational science and NIHR funding later stage translational and applied clinical work.
The NIHR and MRC are working together to deliver the research actions outlined in the ME/CFS final delivery plan that we published in July.
Asked by: Jo Platt (Labour (Co-op) - Leigh and Atherton)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what plans his Department has to ensure that the needs of patients with severe and very severe Myalgic Encephalomyelitis are fully addressed within future NHS service provision.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Most of the actions included in the final delivery plan on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), which we published in July, will benefit all patients with ME/CFS, irrespective of condition severity. However, we are taking specific steps to ensure that patients with severe and very severe ME/CFS are not overlooked. For instance, 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 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. All three sessions of the e-learning programme are now available at the following link:
https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288
The 10-Year Health Plan for the National Health Service also sets out a plan to shift healthcare from hospitals to the community, enabling people to feel supported managing their long-term conditions, including ME/CFS, closer to home. The Neighbourhood Health Service, delivered by new multidisciplinary teams of professionals, will support more services being delivered in the community, helping to create capacity within secondary services for those patients that need it. This will aim to help ensure that those who suffer from ME/CFS are able to live as independently as possible.
Asked by: Max Wilkinson (Liberal Democrat - Cheltenham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department has considered guarantees on specialist care provision for Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS) and very severe ME.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The commissioning of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), services is the responsibility of local integrated care boards, based on the needs of their local population.
The final delivery plan on ME/CFS, which we published in July, 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.