Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to support biomedical research into (a) long covid and (b) myalgic encephalomyelitis.

Answered by Andrew Gwynne - Parliamentary Under-Secretary (Department of Health and Social Care)

The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health, including long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). The NIHR and the Medical Research Council (MRC) are committed to funding high-quality research to understand the causes, consequences, and treatment of long COVID and ME/CFS, and are actively exploring next steps for research in these areas.

Over the last five years, the Government, through the NIHR and the MRC, has invested over £50 million into long COVID research through two specific research calls. The projects funded aim to improve our understanding of the diagnosis and underlying mechanisms of the disease, and the effectiveness of both pharmacological and non-pharmacological therapies and interventions, as well as to evaluate clinical care.

The MRC has provided £4.15 million of ME/CFS research funding since 2013, including £3.19 million jointly awarded with the NIHR for the DecodeME project, which aims to find genetic risk factors of ME/CFS to better understand the disease and ultimately to find treatments. The NIHR has committed approximately £3.9 million of programme funding over the same period.

As findings emerge from current research, we encourage researchers to apply for funding to build on and develop the newly established infrastructure, partnerships, and research capabilities. Government research funders remain available to support long COVID and ME/CFS researchers in their applications for funding.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department are taking to support (a) the Humber and North Yorkshire Integrated Care Board and (b) people diagnosed with myalgic encephalomyelitis.

Answered by Andrew Gwynne - Parliamentary Under-Secretary (Department of Health and Social Care)

NHS England is responsible for allocating funding to integrated care boards (ICBs), including the Humber and North Yorkshire ICB, which are in turn responsible for commissioning specialist myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), services that meet the needs of their population, subject to local prioritisation and funding.

The process of commissioning services should take into account best practice guidance, such as the National Institute for Health and Care Excellence’s (NICE) guidance on ME/CFS diagnosis and management, published in October 2021. The NICE guidelines provide recommendation on principles of care for people with severe ME/CFS, including hospital care, and adapting a multidisciplinary approach involving access to a range of health and social care professionals based on needs.

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.

A public consultation on the interim delivery plan for ME/CFS was run in 2023, and it is a priority of ours to publish the response to this consultation. Departmental officials are in the process of finalising a report summarising the responses. 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.

Question to the Department of Health and Social Care:

To ask His Majesty's Government, further to the Written Statement by the Secretary of State for Health and Social Care on 12 May 2022 (HCWS23), whether the cross-Government delivery plan for myalgic encephalomyelitis (ME)/chronic fatigue syndrome will include provision for hospital treatment and full consideration of how to safely prevent malnutrition in very severe ME.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.

No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.

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

Question to the Department of Health and Social Care:

To ask His Majesty's Government, further to the Written Statement by the Secretary of State for Health and Social Care on 12 May 2022 (HCWS23), what plans are in plans to publish the cross-Government delivery plan for myalgic encephalomyelitis/chronic fatigue syndrome.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.

No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.

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

Question to the Department of Health and Social Care:

To ask His Majesty's Government what assessment they have made of the percentage of the research budget allocated for myalgic encephalomyelitis and Long Covid, and whether they plan to increase this amount.

Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)

A consultation was run in 2023 on the interim delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). In the World ME Day Westminster Hall debate in May 2024, the current Parliamentary Under-Secretary of State for Public Health and Prevention pushed for the publication of a response to the consultation. It is now a priority for the Department, and it is our intention to publish a response in the coming months. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the Final Delivery Plan, which we aim to publish in the winter of 2024/25.

No specific assessment has been made of the proportion of the research budget allocated for ME/CFS or long COVID. Over the last five years, the Department, through the National Institute for Health and Care Research (NIHR), has allocated £6.64 million of funding to support 10 research projects, including the £3.2 million DecodeME study, co-funded with the Medical Research Council. Over the same period, the NIHR and UK Research and Innovation have awarded over £50 million for long COVID research. The NIHR remains committed to funding high-quality research to better understand the causes and health impacts of ME/CFS and long COVID, and to identify and evaluate new treatments and interventions.

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

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 (a) diagnosis, (b) treatment and (c) awareness of Myalgic Encephalomyelitis (ME) in the NHS.

Answered by Andrew Gwynne - Parliamentary Under-Secretary (Department of Health and Social Care)

The Department, through the National Institute for Health and Care Research (NIHR), provides funding for research projects which aim to understand the underlying causes of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and find new treatments for the condition. For example, the NIHR, together with the Medical Research Council, have funded the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, 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. By helping us to understand ME/CFS better, this research has the potential to lead to new treatments for the condition.

Integrated care boards (ICBs) are responsible for commissioning specialist ME/CFS services that meet the needs of their population, subject to local prioritisation and funding. The process of commissioning services should take into account best practice guidance such as the National Institute for Health and Care Excellence’s (NICE) guidance on ME/CFS diagnosis and management, published in October 2021.

It is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. Whilst guidelines are not mandatory, clinicians and commissioners are expected to take them fully into account when designing services to meet the needs of their local population. The NICE promotes its guidance via its website, newsletters, and other media.

In October 2023, the British Association of Clinicians in ME/CFS published the ME/CFS National Services Survey. This report provides insight into the services being delivered for adults, children, and young people with ME/CFS.

The Department has been working with NHS England to develop an e-learning course on ME/CFS for healthcare professionals, to support staff to be able to provide better care and improve patient outcomes. This has involved feedback and input from patients. The Medical Schools Council will promote the NHS England e-learning package on ME/CFS to all United Kingdom medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME/CFS. A decision on next steps on ME/CFS at the national level will be taken in the coming weeks.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he plans to take to improve support for people with myalgic encephalomyelitis.

Answered by Andrew Gwynne - Parliamentary Under-Secretary (Department of Health and Social Care)

Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), services that meet the needs of their population, subject to local prioritisation and funding. The process of commissioning services should take into account best practice guidance, such as the National Institute for Health and Care Excellence’s (NICE) guidance on ME/CFS diagnosis and management, published in October 2021.

The Department funds research into ME/CFS through the National Institute for Health and Care Research (NIHR). The NIHR, together with the Medical Research Council, is funding the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, 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. A decision on the next steps for ME/CFS at the national level will be taken in the coming weeks.

Found: come to terms with the diagnosis rather than being left to struggle with an (erroneous) diagnosis of chronic

Found: Chronic Fatigue Syndrome has been moved from ‘Musculoskeletal disease (general) – Chronic pain syndromes

Found: Application site rash 2 0 Application site wound 1 0 Asthenic conditions Asthenia 96 0 Chronic

Found: I was eventually diagnosed with ME/CFS, (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).

Found: I was eventually diagnosed with ME/CFS, (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).

Found: I was eventually diagnosed with ME/CFS, (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).

Found: come to terms with the diagnosis rather than being left to struggle with an (erroneous) diagnosis of chronic

Found: -fatigue -syndrome -myalgic -encephalomyelitis/ Risks of digestive diseases in long COVID: evidence