Asked by: Cat Smith (Labour - Lancaster and Fleetwood)
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 ensure hospitals develop treatment pathways for Myalgic encephalomyelitis or chronic fatigue syndrome patients at risk of starvation.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
It is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the National Institute for Health and Care Excellence (NICE). The Department is working with NHS England to develop an e-learning course on myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, for healthcare professionals, with the aim of supporting staff in providing better care and improving patient outcomes. This has involved feedback and input from the ME Research Collaborative Patient Advisory Group. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME. The NICE’s guidance NG206 states that people with ME should undertake a dietetic assessment by a dietitian with a special interest in ME, if they are losing weight and at risk of malnutrition.
Asked by: Cat Smith (Labour - Lancaster and Fleetwood)
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 ensure hospitals follow the NICE guidelines on Myalgic encephalomyelitis or chronic fatigue syndrome.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
It is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the National Institute for Health and Care Excellence (NICE). The Department is working with NHS England to develop an e-learning course on myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, for healthcare professionals, with the aim of supporting staff in providing better care and improving patient outcomes. This has involved feedback and input from the ME Research Collaborative Patient Advisory Group. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME. The NICE’s guidance NG206 states that people with ME should undertake a dietetic assessment by a dietitian with a special interest in ME, if they are losing weight and at risk of malnutrition.
Asked by: Lord Hunt of Kings Heath (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of the extent to which the 2021 NICE guidance for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been implemented (1) in general, and (2) in relation to the training health and social care professionals on how to employ the new recommendations, (a) establishing a UK-wide network of hospital-based ME/CFS specialist services, (b) making all NHS services accessible and capable of providing personalised ongoing care and support to those with ME/CFS, and (c) ensuring social care provision for ME/CFS is monitored and regularly reviewed.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
No formal assessment has been made of the extent to which the 2021 National Institute for Health and Care Excellence (NICE) guidance for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), has been implemented.
NHS England does not centrally commission services for ME. Services to support people living with ME are commissioned by integrated care boards (ICBs) to meet the needs of their local population, and are not reviewed or assessed by NHS England centrally. In October 2023, the British Association of Clinicians in ME published their ME/CFS National Services Survey 2023. This survey provides insight on the services being delivered for adults, and children and young people, living with ME. A copy of the survey is attached.
In relation to the training of health and social care professionals, it is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. 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. This has involved feedback and input from the ME Research Collaborative (MERC) Patient Advisory Group. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME.
The Department published My full reality: an interim delivery plan for ME/CFS in August 2023, which sets out a number of actions to improve the experiences and outcomes for people living with the condition, including better education of professionals and improvements to service provision. More information about the interim plan is available on the GOV.UK website, in an online only format.
Alongside the publication of the interim delivery plan, we ran a public consultation to build a picture of how well the plan meets the needs of the ME community, and to understand if there are any gaps where further action may be necessary. The Department is currently analysing over 3,000 responses to the consultation on the interim delivery plan on ME, and will publish a final delivery plan later this year.
In relation to the monitoring of social care provision for individuals with ME, the Department has made a landmark shift in how we hold local authorities to account for their adult social care duties, through a new Care Quality Commission (CQC) assessment. The CQC will examine how well local authorities deliver their Care Act duties, increasing transparency and accountability and, most importantly, driving improved outcomes for people, including those with ME, who draw on care and support. The CQC completed five pilot assessments and is now rolling out assessment to all local authorities.
Asked by: Lord Hunt of Kings Heath (Labour - Life peer)
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.
Asked by: Lord Hunt of Kings Heath (Labour - Life peer)
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.
Asked by: Lord Hunt of Kings Heath (Labour - Life peer)
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.
Asked by: Sharon Hodgson (Labour - Washington and Sunderland West)
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.
Asked by: Sharon Hodgson (Labour - Washington and Sunderland West)
Question to the Department for Science, Innovation & Technology:
To ask the Secretary of State for Science, Innovation and Technology, how the Government plans to allocate funding for research into (a) myalgic encephalomyelitis and (b) other post-viral diseases.
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.
Asked by: Sharon Hodgson (Labour - Washington and Sunderland West)
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.
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 progress her Department has made on the final delivery plan for ME/CFS.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
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.