Question to the Department of Health and Social Care:

To ask His Majesty's Government how much research funding the National Institute for Health and Care Research and the Medical Research Council have invested in biomedical studies of the causes and treatment of myalgic encephalomyelitis (ME) and non-biomedical studies of ME since 2019.

Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)

The Department funds research through the National Institute for Health and Care Research (NIHR). Since 2019, the NIHR has awarded £1.9 million for research into myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. The Medical Research Council (MRC), part of UK Research and Innovation (UKRI), has invested £3.6 million since 2019.

This funding includes the NIHR and UKRI co-funded DecodeME study, a £3.2 million study into the genetic underpinning of ME. The study will analyse samples from 25,000 people with ME, to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. This study aims to increase our understanding of the disease, and therefore contribute to the research base on diagnostic tests and targeted treatments for ME.

In 2020, the NIHR, the Chief Scientist Office in Scotland, and the MRC also funded the James Lind Alliance Priority Setting Partnership for ME, facilitated by the charity Action for ME. The report sets out the top 10 research priorities for ME. These recommendations have been co-produced through a process led by a steering group of people living with ME, carers, and clinicians.

In the interim delivery plan on ME, the Department recognised that there has been a relatively low amount of biomedical research funded on ME, compared with disease burden. The NIHR and MRC welcome applications for further biomedical research into ME. 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. In all disease areas, the amount of funding depends on the volume and quality of scientific activity.

Question to the Department of Health and Social Care:

To ask His Majesty's Government what progress they have made on the funding of biomedical research into myalgic encephalomyelitis (ME) since the then Parliamentary Under Secretary of State for Health and Social Care stated on 24 January 2019 that “there have not been good enough research proposals in the ME space, partly because of the stigma … and partly because of the division in the medical community”.

Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)

The Department funds research through the National Institute for Health and Care Research (NIHR). Since 2019, the NIHR has awarded £1.9 million for research into myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. The Medical Research Council (MRC), part of UK Research and Innovation (UKRI), has invested £3.6 million since 2019.

This funding includes the NIHR and UKRI co-funded DecodeME study, a £3.2 million study into the genetic underpinning of ME. The study will analyse samples from 25,000 people with ME, to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. This study aims to increase our understanding of the disease, and therefore contribute to the research base on diagnostic tests and targeted treatments for ME.

In 2020, the NIHR, the Chief Scientist Office in Scotland, and the MRC also funded the James Lind Alliance Priority Setting Partnership for ME, facilitated by the charity Action for ME. The report sets out the top 10 research priorities for ME. These recommendations have been co-produced through a process led by a steering group of people living with ME, carers, and clinicians.

In the interim delivery plan on ME, the Department recognised that there has been a relatively low amount of biomedical research funded on ME, compared with disease burden. The NIHR and MRC welcome applications for further biomedical research into ME. 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. In all disease areas, the amount of funding depends on the volume and quality of scientific activity.

Question to the Department of Health and Social Care:

To ask His Majesty's Government what plans they have to provide funding for biomedical research into (1) the causes of, and (2) potential cures for, myalgic encephalomyelitis.

Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)

The Department provides funding for 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 of, and potential cures for, myalgic encephalomyelitis (ME). These applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

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 (‘DecodeME’) which is the world’s largest genetic study of the disease.

Question to the Department for Science, Innovation & Technology:

To ask the Secretary of State for Science, Innovation and Technology, what steps her Department is taking to support research into (a) understanding, (b) treating and (c) curing Myalgic Encephalomyelitis.

Answered by Andrew Griffith - Minister of State (Department for Science, Innovation and Technology)

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.

Question to the Department for Science, Innovation & Technology:

To ask the Secretary of State for Science, Innovation and Technology, what research the Medical Research Council is funding on the (a) causes and (b) treatment of Myalgic Encephalomyelitis.

Answered by Andrew Griffith - Minister of State (Department for Science, Innovation and Technology)

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.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps her Department is taking to fund research to (a) tackle the causes of and (b) treat Myalgic Encephalomyelitis.

Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)

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.

Question to the Department for Science, Innovation & Technology:

To ask the Secretary of State for Science, Innovation and Technology, what steps her Department is taking to help facilitate research into the (a) causes and (b) treatment of Myalgic Encephalomyelitis.

Answered by Andrew Griffith - Minister of State (Department for Science, Innovation and Technology)

Since 2012, UK Research and Innovation (UKRI)’s Medical Research Council (MRC) has awarded £6.2 million for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This includes DecodeME, a significant strategic initiative co-funded by the National Institute of Health and Care Research in 2020, which aims to find genetic causes of ME/CFS in order to better understand the disease and ultimately to find treatments.

The Government works with the ME/CFS Priority Setting Partnership to identify research priorities in this area and MRC has an open highlight notice to encourage ME/CFS research.

Question to the Department for Science, Innovation & Technology:

To ask the Secretary of State for Science, Innovation and Technology, what assessment she has made of the potential merits of increasing public funding for research into Myalgic Encephalomyelitis.

Answered by Andrew Griffith - Minister of State (Department for Science, Innovation and Technology)

Since 2012, UK Research and Innovation (UKRI)’s Medical Research Council (MRC) has awarded £6.2 million for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This includes DecodeME, a significant strategic initiative co-funded by the National Institute of Health and Care Research in 2020, which aims to find genetic causes of ME/CFS in order to better understand the disease and ultimately to find treatments.

The Government works with the ME/CFS Priority Setting Partnership to identify research priorities in this area and MRC has an open highlight notice to encourage ME/CFS research.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that funding for biomedical research into myalgic encephalomyelitis (ME) is adequate; and whether he plans to take steps to establish a centre of excellence on ME to (a) promote understanding of and (b) develop effective treatments for that illness.

Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)

The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR has provided around £4.4 million of programme funding for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 2011.

Through the NIHR, the Department has co-funded, with the Medical Research Council (MRC) a £3.2 million study called DecodeME into the genetic underpinning of ME/CFS. The study will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. This study aims to increase our understanding of the disease and therefore contribute to the research base on diagnostic tests and targeted treatments for ME/CFS.

The Department and the NIHR has no specific plans to establish a centre of excellence for ME research. The NIHR welcomes funding applications for research into any aspect of human health, including biomedical research for ME/CFS. These applications are subject to peer review and judged in open competition, with awards being made based on the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of providing additional funding for research into treatments for myalgic encephalomyelitis.

Answered by Will Quince

The Department has asked the UK Clinical Research Collaboration to convene a subgroup on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) with a range of stakeholders, including research funders, to ensure high quality applications for research into ME/CFS and support the research community to build capacity and capability.

On 12 May 2022, we announced the intention to develop a cross-Government Delivery Plan for ME/CFS in England. The delivery plan will build on the recommendations of the ME/CFS Priority Setting Partnership and the recently updated guideline from the National Institute for Health and Care Excellence to ensure that people living with ME/CFS have the appropriate support.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, how much his Department plans to spend on biomedical research into the (a) causes, (b) consequences and (c) treatment of Myalgic encephalomyelitis in 2022-23.

Answered by Will Quince

The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR has provided approximately £4.4 million for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 2011. In addition, the NIHR and the Medical Research Council have jointly funded a £3.2 million study into genetics and ME/CFS. The study will analyse samples from 25,000 people with ME/CFS to search for genetic differences which may indicate underlying causes or an increased risk of developing the condition.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if he will increase funding for research into myalgic encephalomyelitis; and what steps he is taking to meet the additional needs of people living with myalgic encephalomyelitis and other similar chronic conditions.

Answered by Gillian Keegan - Secretary of State for Education

The Department has asked the UK Clinical Research Collaboration to convene a subgroup on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) with a range of stakeholders, including research funders, to ensure high quality applications for research into ME/CFS and support the research community to build capacity and capability.

On 12 May 2022, we announced the intention to develop a cross-Government Delivery Plan for ME/CFS in England. The delivery plan will build on the recommendations of the ME/CFS Priority Setting Partnership and the recently updated guideline from the National Institute for Health and Care Excellence to ensure that people living with ME/CFS have the appropriate support.

NHS England and NHS Improvement are establishing a task and finish group to produce guidance on the provision of high-quality services for people living with long term pain by September 2022. The guidance is aimed at integrated care systems to provide core principles which can be used to inform the development of local models of care to support people living with chronic pain.

Question to the Department of Health and Social Care:

To ask Her Majesty's Government whether they have plans to provide additional funding for Myalgic Encephalomyelitis (ME) research; and if so, when.

Answered by Lord Kamall

No specific assessment of the services available to people with myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) has been made. Clinical commissioning groups are best placed to plan, assess and commission ME/CFS care services. These processes are subject to local prioritisation and funding and should take into account best practice guidance, such as the National Institute for Health and Care Excellence’s (NICE) most recent guidelines. Whilst guidelines are not mandatory, clinicians and commissioners are expected to take them fully into account in designing services that meet the needs of their local population and to work towards their implementation over time.

We continue to consider options to improve outcomes for people with ME/CFS and their families, including the potential development of a national strategy. The Government invests in health research through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC). The NIHR and MRC welcome high-quality applications for research into all aspects of ME/CFS. While there are no plans to provide additional funding at this time, both funders are considering how they can support the academic community to drive research in this underserved area.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether he has plans to fund research into mitochondria cells and the effect upon them in relation to sufferers of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome; and if he will make a statement.

Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)

The Department funds research through the National Institute for Health Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health, including myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). However, 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 will continue to work with stakeholders to consider how best to support continued research into ME/CFS.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether he has made a recent assessment of the potential merits of increasing funding for research into ME and Chronic Fatigue Syndrome.

Answered by Edward Argar - Minister of State (Ministry of Justice)

The Government invests in health research through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC), through UK Research and Innovation. The NIHR and MRC both welcome high-quality applications for research into all aspects of myalgic encephalomyelitis (ME), otherwise known as chronic fatigue syndrome (CFS). No assessment has been made of the merits of increasing funding for research into ME/CFS. While it is not usual practice for the NIHR and MRC to ring-fence funds for particular topics or conditions, the MRC has had a cross-board highlight notice on CFS/ME open since 2003.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, how much Government funding has been provided to ME research in each of the last three years.

Answered by Edward Argar - Minister of State (Ministry of Justice)

The following table shows the funding for research into myalgic encephalomyelitis through the National Institute for Health Research and UK Research and Innovation in the last three years.