The National Institute for Health and Care Research (NIHR) is exploring opportunities with international research partners to foster research cooperation in areas of unmet need. For example, the Department of Health and Social Care has close links with the United States Department of Health and Human Services’ Office of Long COVID Research and Practice. The US’ Assistant Secretary for Health has discussed long COVID with the Chief Medical Officer, and the Department of Health and Social Care has also co-hosted a series of researcher exchanges between United Kingdom and US experts.

The NIHR and Medical Research Council are committed to funding high-quality research to understand the causes, consequences, and treatment of long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome, and are actively exploring next steps for research in these areas.

The 2021 National Institute for Health and Care Excellence’s (NICE) guidelines on the diagnosis and management of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), provides recommendations on principles of care for people with severe ME/CFS, including hospital care, and adapting a multidisciplinary approach with access to a range of health and social care professionals based on needs.

The NICE’s guidelines are not mandatory, but the Government does expect healthcare commissioners to take the guidelines fully into account in designing services to meet the needs of their local population, and to work towards their implementation over time.

No specific assessment has been made of the adequacy of the safety of National Health Service care for patients with severe and very severe ME/CFS, but there are steps that the Government is taking to improve care for patients with ME/CFS, including those with severe and very severe ME/CFS.

The Department has funded the £3.2 million DecodeME study with the Medical Research Council to understand the causes and consequences of, and find treatments for, ME/CFS. This study aims to understand if there is a genetic component to the condition and, in doing so, increase our understanding of ME/CFS to support the development of diagnostic tests and targeted treatments.

The public consultation on the interim delivery plan for ME/CFS was run in 2023. It has been a priority since July 2024 to publish the response to the 2023 consultation on the ME/CFS interim delivery plan. Departmental officials are in the process of finalising a report summarising the responses, for publication. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish in the winter of 2024/25. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease, including those with severe and very severe ME/CFS.

The 2021 National Institute for Health and Care Excellence’s (NICE) guidelines on the diagnosis and management of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), provides recommendations on principles of care for people with severe ME/CFS, including hospital care, and adapting a multidisciplinary approach with access to a range of health and social care professionals based on needs.

The NICE’s guidelines are not mandatory, but the Government does expect healthcare commissioners to take the guidelines fully into account in designing services to meet the needs of their local population, and to work towards their implementation over time.

No specific assessment has been made of the adequacy of the safety of National Health Service care for patients with severe and very severe ME/CFS, but there are steps that the Government is taking to improve care for patients with ME/CFS, including those with severe and very severe ME/CFS.

The Department has funded the £3.2 million DecodeME study with the Medical Research Council to understand the causes and consequences of, and find treatments for, ME/CFS. This study aims to understand if there is a genetic component to the condition and, in doing so, increase our understanding of ME/CFS to support the development of diagnostic tests and targeted treatments.

The public consultation on the interim delivery plan for ME/CFS was run in 2023. It has been a priority since July 2024 to publish the response to the 2023 consultation on the ME/CFS interim delivery plan. Departmental officials are in the process of finalising a report summarising the responses, for publication. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish in the winter of 2024/25. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease, including those with severe and very severe ME/CFS.

Medical Research Council (MRC) has invested in research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, awarding £6.6m in this area since 2012. This includes through DecodeME, the world’s largest ME/CSF study, via strategic co-funding with the National Institute of Health and Care Research, which aims to find genetic factors to better understand ME/CFS disease pathways and unlock future treatment pathways.

We continue to encourage high-quality proposals across our funding opportunities, maintaining an open highlight notice to encourage ME/CFS research. MRC also co-funded the ME/CFS Priority Setting Partnership to identify research priorities for ME/CFS, led by people with ME/CFS, their carers and clinicians, and facilitated by Action for M.E.

Medical Research Council (MRC) has invested in research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, awarding £6.6m in this area since 2012. This includes through DecodeME, the world’s largest ME/CSF study, via strategic co-funding with the National Institute of Health and Care Research, which aims to find genetic factors to better understand ME/CFS disease pathways and unlock future treatment pathways.

We continue to encourage high-quality proposals across our funding opportunities, maintaining an open highlight notice to encourage ME/CFS research. MRC also co-funded the ME/CFS Priority Setting Partnership to identify research priorities for ME/CFS, led by people with ME/CFS, their carers and clinicians, and facilitated by Action for M.E.

Medical Research Council (MRC) has invested in research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, awarding £6.6m in this area since 2012. This includes through DecodeME, the world’s largest ME/CSF study, via strategic co-funding with the National Institute of Health and Care Research, which aims to find genetic factors to better understand ME/CFS disease pathways and unlock future treatment pathways.

We continue to encourage high-quality proposals across our funding opportunities, maintaining an open highlight notice to encourage ME/CFS research. MRC also co-funded the ME/CFS Priority Setting Partnership to identify research priorities for ME/CFS, led by people with ME/CFS, their carers and clinicians, and facilitated by Action for M.E.

We have been consulting on My Full Reality, the cross-government interim delivery plan on myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), which seeks to improve the experiences and outcomes of people living with this condition.

We are analysing the results of the consultation, and the views and experiences gathered through this consultation will be used to build a picture of how well the interim delivery plan identifies and meets the needs of the ME and CFS community, and to highlight any significant gaps where further action may be necessary. We will publish a summary of the consultation responses, which will inform the final delivery plan, in due course.

The Department commissions research through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health, including on the causes and treatment of myalgic encephalomyelitis (ME).

In the last five years, the NIHR has allocated approximately £3.44 million to support nine research projects on ME and chronic fatigue syndrome. The NIHR is also co-funding, with the Medical Research Council, a £3.2 million study called DecodeME, which is the world’s largest genetic study of the disease.

The Government has invested more than £50 million into 22 research projects for long COVID, through the National Institute for Health and Care Research (NIHR) and UK Research and Innovation.

In the last five years, the NIHR has allocated approximately £3.44 million to support nine research projects on myalgic encephalomyelitis (ME) and chronic fatigue syndrome. The NIHR is also co-funding, with the Medical Research Council, a £3.2 million study called DecodeME, which is the world’s largest genetic study of the disease.

The Department commissions research through the NIHR. It is not currently specifically funding research on potential links between ME and long COVID, but it welcomes funding applications for research into any aspect of human health.

The Systematized Nomenclature of Medicine - Clinical Terms (SNOMED CT) is the structured clinical vocabulary for use in an electronic health record. It is a contractual requirement for all National Health Service healthcare providers in England to use SNOMED CT for capturing clinical terms, including diagnoses, within electronic patient record systems.

Within SNOMED CT, all content for myalgic encephalomyelitis and chronic fatigue syndrome 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.

Updates to the United Kingdom’s edition of SNOMED CT are made by NHS England, with any user being able to submit requests for new or changed concepts and codes, via a central portal.

This data is not available. Services for people with myalgic encephalomyelitis are commissioned by local clinical commissioning groups. It is the responsibility of the local National Health Service commissioners to ensure NHS services are commissioned to meet local need and that they address any shortfalls in provision. Where appropriate, this will include commissioning services provided by voluntary sector organisations.

This data is not available. Services for people with myalgic encephalomyelitis are commissioned by local clinical commissioning groups. It is the responsibility of the local National Health Service commissioners to ensure NHS services are commissioned to meet local need and that they address any shortfalls in provision. Where appropriate, this will include commissioning services provided by voluntary sector organisations.

We do not hold the information requested on funding for myalgic encephalitis/chronic fatigue syndrome (ME/CFS) research according to biopsychological, biopsychosocial and biomedical research.

The following table shows information provided by the National Institute for Health Research (NIHR) on Departmental programme research funding for ME/CFS, per year, since financial year 2010-11. Further information on this research is available through the NIHR Journals Library at the following link:

https://www.journalslibrary.nihr.ac.uk/programmes/

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

We do not hold the information requested on funding for myalgic encephalitis/chronic fatigue syndrome (ME/CFS) research according to biopsychological, biopsychosocial and biomedical research.

The following table shows information provided by the National Institute for Health Research (NIHR) on Departmental programme research funding for ME/CFS, per year, since financial year 2010-11. Further information on this research is available through the NIHR Journals Library at the following link:

https://www.journalslibrary.nihr.ac.uk/programmes/

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

Since 2009/10, the Medical Research Council (MRC) has received 32 research proposals relating to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), seven of which have been funded.

The MRC supports research in response to proposals from the research community. High quality applications on any aspect of human health are always welcomed and awards are made according to their scientific quality and importance to human health.