Asked by: Sharon Hodgson (Labour - Washington and Sunderland West)
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.
Asked by: John McDonnell (Labour - Hayes and Harlington)
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.
Asked by: John McDonnell (Labour - Hayes and Harlington)
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.
Asked by: Kerry McCarthy (Labour - Bristol East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment she has made of the adequacy of financial support for medical research into post-viral conditions.
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). In recent years, the NIHR has made major strategic investments in long COVID and myalgic encephalomyelitis (also known as chronic fatigue syndrome) and is exploring additional research in these areas. No specific assessment has been made of the adequacy of financial support for medical research into post-viral conditions as a whole.
The NIHR welcomes funding applications for research into any aspect of human health, including post-viral conditions. These applications are subject to peer review and judged through 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 NIHR funding depends on the volume and quality of scientific activity.
Asked by: Daniel Zeichner (Labour - Cambridge)
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.
Asked by: Debbie Abrahams (Labour - Oldham East and Saddleworth)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to the action for me report entitled Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in England, published May 2023, what assessment he has made of the implications for his policies of that report's findings.
Answered by Will Quince
‘My Full Reality’, the cross-government Interim Delivery Plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was published on 9 August 2023. The Plan aims to improve experiences and outcomes for people with ME/CFS by setting out agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition, and improvements to service provision. Alongside the Plan we have published an eight-week consultation to build a picture of how well the Plan meets the needs of the ME/CFS community, and to highlight any significant gaps where further action may be necessary. The Plan and consultation are available at the following link:
We have made no assessment of the implications of the report published by Action for ME, ‘Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in England’, the adequacy of implementation of the National Institute for Health and Care Excellence (NICE) guideline on ME/CFS, or on the provision of specialist services for people with ME/CFS.
Integrated care boards (ICBs) are responsible for commissioning services for people with ME/CFS to meet local needs. In making commissioning decisions, we would expect ICBs to consider guidelines published by NICE.
Asked by: Debbie Abrahams (Labour - Oldham East and Saddleworth)
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 adequacy of the provision of specialist services for people with Chronic Fatigue Syndrome.
Answered by Will Quince
‘My Full Reality’, the cross-government Interim Delivery Plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was published on 9 August 2023. The Plan aims to improve experiences and outcomes for people with ME/CFS by setting out agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition, and improvements to service provision. Alongside the Plan we have published an eight-week consultation to build a picture of how well the Plan meets the needs of the ME/CFS community, and to highlight any significant gaps where further action may be necessary. The Plan and consultation are available at the following link:
We have made no assessment of the implications of the report published by Action for ME, ‘Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in England’, the adequacy of implementation of the National Institute for Health and Care Excellence (NICE) guideline on ME/CFS, or on the provision of specialist services for people with ME/CFS.
Integrated care boards (ICBs) are responsible for commissioning services for people with ME/CFS to meet local needs. In making commissioning decisions, we would expect ICBs to consider guidelines published by NICE.
Asked by: Debbie Abrahams (Labour - Oldham East and Saddleworth)
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 adequacy of the implementation of NICE Guidelines on Chronic Fatigue Syndrome.
Answered by Will Quince
‘My Full Reality’, the cross-government Interim Delivery Plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was published on 9 August 2023. The Plan aims to improve experiences and outcomes for people with ME/CFS by setting out agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition, and improvements to service provision. Alongside the Plan we have published an eight-week consultation to build a picture of how well the Plan meets the needs of the ME/CFS community, and to highlight any significant gaps where further action may be necessary. The Plan and consultation are available at the following link:
We have made no assessment of the implications of the report published by Action for ME, ‘Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in England’, the adequacy of implementation of the National Institute for Health and Care Excellence (NICE) guideline on ME/CFS, or on the provision of specialist services for people with ME/CFS.
Integrated care boards (ICBs) are responsible for commissioning services for people with ME/CFS to meet local needs. In making commissioning decisions, we would expect ICBs to consider guidelines published by NICE.
Asked by: Debbie Abrahams (Labour - Oldham East and Saddleworth)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, when his Department plans to release a delivery plan for Myalgic Encephalomyelitis, Chronic Fatigue Syndrome; and if he will make a statement.
Answered by Will Quince
‘My Full Reality’, the cross-government Interim Delivery Plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was published on 9 August 2023. The Plan aims to improve experiences and outcomes for people with ME/CFS by setting out agreed actions to drive an expansion of research, better education of professionals, improvements in attitudes towards the condition, and improvements to service provision. Alongside the Plan we have published an eight-week consultation to build a picture of how well the Plan meets the needs of the ME/CFS community, and to highlight any significant gaps where further action may be necessary. The Plan and consultation are available at the following link:
We have made no assessment of the implications of the report published by Action for ME, ‘Implementation of the NICE Guideline [NG206] on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in England’, the adequacy of implementation of the National Institute for Health and Care Excellence (NICE) guideline on ME/CFS, or on the provision of specialist services for people with ME/CFS.
Integrated care boards (ICBs) are responsible for commissioning services for people with ME/CFS to meet local needs. In making commissioning decisions, we would expect ICBs to consider guidelines published by NICE.
Asked by: Rupa Huq (Labour - Ealing Central and Acton)
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.