Asked by: Lee Anderson (Reform UK - Ashfield)
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 help increase awareness of ME symptoms.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
We published the final delivery plan (FDP) for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), on 22 July, which focuses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
To support healthcare professionals in the diagnosis and management of ME/CFS, as set out in the FDP, the Department of Health and Social Care (DHSC) 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, with sessions one and two having universal access, whilst the third session is only available to healthcare professionals, of the e-learning programme are now available at the following link:
https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288
The Medical Schools Council will promote the NHS England e-learning programme on ME/CFS to all United Kingdom medical schools and will encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. The General Medical Council (GMC) is the regulator of medical schools, and it is important that education is reenforced at different stages of medical training. Royal colleges play an important role in this. The GMC has included ME/CFS in the content map for the new national exam, so all medical schools will need to teach it as a subject.
As outlined in the FDP, we will improve awareness of ME/CFS by launching a public awareness initiative to promote wider awareness and understanding of the condition and support available to people with ME/CFS and their families.
DHSC will also engage stakeholders to discuss timely diagnosis and support for children who have ME/CFS and their families, as well as best practice in relation to safeguarding responsibilities. This will be taken forward in parallel with NHS England’s actions on ME/CFS services and neighbourhood multidisciplinary teams for children and young people.
Furthermore, as outlined in the FDP, the Department for Education is encouraging the sharing of ME/CFS-specific information with relevant organisations and promoting relevant training and resources to support children and young people.
Asked by: Lee Anderson (Reform UK - Ashfield)
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 help support children and young people with ME/CFS.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
We published the final delivery plan (FDP) for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), on 22 July, which focuses on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
To support healthcare professionals in the diagnosis and management of ME/CFS, as set out in the FDP, the Department of Health and Social Care (DHSC) 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, with sessions one and two having universal access, whilst the third session is only available to healthcare professionals, of the e-learning programme are now available at the following link:
https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288
The Medical Schools Council will promote the NHS England e-learning programme on ME/CFS to all United Kingdom medical schools and will encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. The General Medical Council (GMC) is the regulator of medical schools, and it is important that education is reenforced at different stages of medical training. Royal colleges play an important role in this. The GMC has included ME/CFS in the content map for the new national exam, so all medical schools will need to teach it as a subject.
As outlined in the FDP, we will improve awareness of ME/CFS by launching a public awareness initiative to promote wider awareness and understanding of the condition and support available to people with ME/CFS and their families.
DHSC will also engage stakeholders to discuss timely diagnosis and support for children who have ME/CFS and their families, as well as best practice in relation to safeguarding responsibilities. This will be taken forward in parallel with NHS England’s actions on ME/CFS services and neighbourhood multidisciplinary teams for children and young people.
Furthermore, as outlined in the FDP, the Department for Education is encouraging the sharing of ME/CFS-specific information with relevant organisations and promoting relevant training and resources to support children and young people.
Asked by: Navendu Mishra (Labour - Stockport)
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 improve the (a) training and (b) awareness of healthcare professionals in (i) diagnosing and (ii) supporting people with (A) myalgic encephalomyelitis or chronic fatigue syndrome and (B) long COVID.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department published the final myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), delivery plan on 22 July. The plan focusses on boosting research, improving education and attitudes, and bettering the lives of people with this debilitating disease.
To support healthcare professionals in the diagnosis and management of ME/CFS, as set out in the ME/CFS Final Delivery Plan, 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 on the NHS.UK website, with sessions one and two having universal access whilst the third session is only available to healthcare professionals, at the following link:
https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288.
The Medical Schools Council will promote the NHS England e-learning programme on ME/CFS to all United Kingdom medical schools and will encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. The General Medical Council (GMC) is the regulator of medical schools, and it is important that education is reenforced at different stages of medical training. Royal colleges play an important role in this. The GMC has included ME/CFS in the content map for the new national exam, so all medical schools will need to teach it as a subject.
There is also targeted advice for healthcare professionals to manage long COVID. Patients should be managed according to current clinical guidance, such as that published and updated by the National Institute for Health and Care Excellence, which is available at the following link:
https://www.nice.org.uk/guidance/NG188
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 steps his Department is taking to (a) encourage research on and (b) support the development of (i) strategic partnerships and (ii) research infrastructure for ME and Chronic Fatigue Syndrome.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health and care, including post-acute infection condition such as myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), for which research funding is available. 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, rather than designating an amount of funding for a particular condition. Welcoming applications on ME/CFS and other post-acute infection conditions to all NIHR programmes enables maximum flexibility both in terms of the amount of research funding a particular area can be awarded, and the type of research which can be funded.
The NIHR Academy offers extensive support for early-career researchers through various fellowships, training awards, and mentoring structures. For instance, through the INSIGHT Programme, they work with universities to fund research masters studentships and to attract students into research. Through Academic Clinical Fellowships, for doctors and dentists, and Predoctoral Academic Fellowships, for other health professionals, the NIHR Academy supports healthcare practitioners in integrating research with clinical practice.
Together with the Medical Research Council (MRC), which is part of UK Research and Innovation, we are actively exploring next steps in ME/CFS research, as outlined in the ME/CFS final delivery plan. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS. This funding opportunity is one component of our approach to improve evidence around the diagnosis, management, and treatment of post-acute infection conditions, including ME/CFS. We are also planning an NIHR and MRC hosted showcase event for post-acute infection conditions research, including for ME/CFS and long COVID, later this year to stimulate further research in this field.
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, how much funding his Department plans to allocate for research on ME and Chronic Fatigue Syndrome in the next (a) year and (b) five years.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health and care, including post-acute infection condition such as myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), for which research funding is available. 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, rather than designating an amount of funding for a particular condition. Welcoming applications on ME/CFS and other post-acute infection conditions to all NIHR programmes enables maximum flexibility both in terms of the amount of research funding a particular area can be awarded, and the type of research which can be funded.
The NIHR Academy offers extensive support for early-career researchers through various fellowships, training awards, and mentoring structures. For instance, through the INSIGHT Programme, they work with universities to fund research masters studentships and to attract students into research. Through Academic Clinical Fellowships, for doctors and dentists, and Predoctoral Academic Fellowships, for other health professionals, the NIHR Academy supports healthcare practitioners in integrating research with clinical practice.
Together with the Medical Research Council (MRC), which is part of UK Research and Innovation, we are actively exploring next steps in ME/CFS research, as outlined in the ME/CFS final delivery plan. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS. This funding opportunity is one component of our approach to improve evidence around the diagnosis, management, and treatment of post-acute infection conditions, including ME/CFS. We are also planning an NIHR and MRC hosted showcase event for post-acute infection conditions research, including for ME/CFS and long COVID, later this year to stimulate further research in this field.
Asked by: Tom Morrison (Liberal Democrat - Cheadle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department plans to establish a research hub to (a) coordinate research and (b) support early-career researchers working on ME and Chronic Fatigue Syndrome.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department funds research through the National Institute for Health and Care Research (NIHR). Between the 2019/20 and 2023/24 financial years the NIHR committed approximately £3.7 million to research projects and programmes on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). The NIHR, alongside other Government research funders, remains committed to funding high-quality research to understand the causes, consequences, and treatment for ME/CFS.
Together with the Medical Research Council (MRC), which is part of UK Research and Innovation, we are actively exploring next steps in ME/CFS research, as outlined in the ME/CFS final delivery plan. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS. This funding opportunity is one component of our approach to improve the evidence around the diagnosis, management, and treatment of post-acute infection conditions, including ME/CFS. We are also planning an NIHR and MRC hosted showcase event for post-acute infection conditions research, including ME/CFS and long COVID, later this year to stimulate further research in this field.
The NIHR welcomes funding applications for research into any aspect of human health and care, including post-acute infection conditions such as ME/CFS, and research funding is available. 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. Welcoming applications on ME/CFS and other post-acute infection conditions to all NIHR programmes enables maximum flexibility both in terms of the amount of research funding a particular area can be awarded, and the type of research which can be funded. Establishing a research hub for ME/CFS would not provide the same level of flexibility. The NIHR Academy offers extensive support for early-career researchers through various fellowships, training awards, and mentoring structures. For instance, through the INSIGHT Programme, they work with universities to fund research masters studentships and attract students into research. Through Academic Clinical Fellowships, for doctors and dentists, and Predoctoral Academic Fellowships, for other health professionals, the NIHR Academy supports healthcare practitioners in integrating research with clinical practice.
Asked by: Tom Morrison (Liberal Democrat - Cheadle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how much funding his Department has allocated for Myalgic encephalomyelitis research in each of the last five years.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department funds research through the National Institute for Health and Care Research (NIHR). Between the 2019/20 and 2023/24 financial years the NIHR committed approximately £3.7 million to research projects and programmes on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). The NIHR, alongside other Government research funders, remains committed to funding high-quality research to understand the causes, consequences, and treatment for ME/CFS.
Together with the Medical Research Council (MRC), which is part of UK Research and Innovation, we are actively exploring next steps in ME/CFS research, as outlined in the ME/CFS final delivery plan. This includes a new funding opportunity for a development award focussed on evaluating repurposed pharmaceutical inventions for post-acute infection syndromes and associated conditions, including ME/CFS. This funding opportunity is one component of our approach to improve the evidence around the diagnosis, management, and treatment of post-acute infection conditions, including ME/CFS. We are also planning an NIHR and MRC hosted showcase event for post-acute infection conditions research, including ME/CFS and long COVID, later this year to stimulate further research in this field.
The NIHR welcomes funding applications for research into any aspect of human health and care, including post-acute infection conditions such as ME/CFS, and research funding is available. 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. Welcoming applications on ME/CFS and other post-acute infection conditions to all NIHR programmes enables maximum flexibility both in terms of the amount of research funding a particular area can be awarded, and the type of research which can be funded. Establishing a research hub for ME/CFS would not provide the same level of flexibility. The NIHR Academy offers extensive support for early-career researchers through various fellowships, training awards, and mentoring structures. For instance, through the INSIGHT Programme, they work with universities to fund research masters studentships and attract students into research. Through Academic Clinical Fellowships, for doctors and dentists, and Predoctoral Academic Fellowships, for other health professionals, the NIHR Academy supports healthcare practitioners in integrating research with clinical practice.
Asked by: Sarah Gibson (Liberal Democrat - Chippenham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what support his Department provides to GPs to help improve the (a) early recognition and (b) management of ME in (i) Wiltshire and (ii) areas in Wiltshire with limited specialist services.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Earlier this year, NHS England completed a long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), stocktake to provide a national overview of service delivery in commissioning and contracting, assessing access, activity, and outcomes. The findings confirmed widely recognised challenges, as well as significant variation in care delivery across England, and a lack of comprehensive activity data.
The Department is working with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, including general practitioners in Wiltshire, with the aim of supporting staff to be able to provide better care and improve patient outcomes. Sessions one and two of the e-learning programme are now available at the following link:
https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288
The third session is currently being finalised and will be launched later in 2025.
The Medical Schools Council will promote the NHS England e-learning programme on ME/CFS to all United Kingdom medical schools, and will encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. The General Medical Council (GMC) is the regulator of medical schools, and it is important that education is reenforced at different stages of medical training. Royal colleges play an important role in this. The GMC has included ME/CFS in the content map for the new national exam, so all medical schools will need to teach it as a subject.
We are developing a final delivery plan for ME/CFS, which we aim to publish in due course. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease in Wiltshire and throughout England.
Asked by: Sarah Gibson (Liberal Democrat - Chippenham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent assessment he has made of the adequacy of NHS services for people with myalgic encephalomyelitis.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Earlier this year, NHS England completed a long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), stocktake to provide a national overview of service delivery in commissioning and contracting, assessing access, activity, and outcomes. The findings confirmed widely recognised challenges, as well as significant variation in care delivery across England, and a lack of comprehensive activity data.
The Department is working with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, including general practitioners in Wiltshire, with the aim of supporting staff to be able to provide better care and improve patient outcomes. Sessions one and two of the e-learning programme are now available at the following link:
https://learninghub.nhs.uk/catalogue/mecfselearning?nodeId=7288
The third session is currently being finalised and will be launched later in 2025.
The Medical Schools Council will promote the NHS England e-learning programme on ME/CFS to all United Kingdom medical schools, and will encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. The General Medical Council (GMC) is the regulator of medical schools, and it is important that education is reenforced at different stages of medical training. Royal colleges play an important role in this. The GMC has included ME/CFS in the content map for the new national exam, so all medical schools will need to teach it as a subject.
We are developing a final delivery plan for ME/CFS, which we aim to publish in due course. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease in Wiltshire and throughout England.
Asked by: Lord Strasburger (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government, further to the Written Answer by Baroness Merron on 10 March (HL5426), which of the research studies relating to long Covid are still running; and how much they are planning to spend in this financial year to treat or cure the symptoms of long Covid.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Research (NIHR) and UK Research and Innovation (UKRI) have dedicated funding to research into treatment options, clinical trials, and to understanding the underlying mechanisms of long COVID. The overall Government investment in long COVID research is over £57 million. Government research funders welcome applications for funding for long COVID research.
Of the research studies identified in the answer for HL5426, four are ongoing and have expected spend in this financial year, namely: STIMULATE-ICP; PHOSP-COVID; Percutaneous Auricular Nerve Stimulation for Treating Post-COVID Fatigue; and Online cognitive training for people with cognitive impairment following SARS-CoV-2 infection. The total budget for these studies is over £15 million, but spend in this financial year is not yet confirmed, as it depends on the progress of the studies.
No specific assessment has been made of the progress of United Kingdom-based researchers on finding methods to treat the symptoms of long COVID. The UK has a strong track record of developing and evaluating new treatments for COVID-19 through randomised control trials. In November 2020, the NIHR and UKRI launched their first call for research proposals on long COVID and subsequently funded the treatments for long COVID. In 2021, the NIHR funded the STIMULATE-ICP study as the largest trial for long COVID treatments at the time. This study is still ongoing, and emerging findings will be shared with the National Institute for Health and Care Excellence. The NIHR Innovation Observatory has undertaken a rapid horizon scan to identify repurposed medicines in clinical development for the treatment of myalgic encephalomyelitis, also known as chronic fatigue syndrome, as well as related conditions such as long COVID and fibromyalgia. The horizon scan focused on medicines with a UK licence that are in phase two or three clinical trials, with trial registration dates from 2020 onwards.
Unfortunately, no study globally has identified a cure for long COVID. The REGAIN study became the first randomised trial to show a benefit from rehabilitation for people with long COVID, and the first high quality evidence confirming the sustained clinical benefit and lack of harm from rehabilitation programmes for long COVID. The NIHR provided £1.5 million towards this trial, which combined exercise with behavioural support, to measure their effects on symptoms, health, and other outcomes.