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.

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, 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.

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 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.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps she has taken to ensure that the SNOMED CT classification system used by GPs in primary care is (a) adequate and (b) used consistently for diagnosing myalgic encephalomyelitis.

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

The Systematized Nomenclature of Medicine - Clinical Terms (SNOMED CT) is the structured clinical vocabulary for use in an electronic health record. It is a contractual requirement for all National Health Service healthcare providers in England to use SNOMED CT for capturing clinical terms, including diagnoses, within electronic patient record systems.

Within SNOMED CT, all content for myalgic encephalomyelitis and chronic fatigue syndrome is contained within a single overarching code, with linked codes for mild, moderate, and severe forms. These can be used by all NHS healthcare providers, including general practitioners.

Updates to the United Kingdom’s edition of SNOMED CT are made by NHS England, with any user being able to submit requests for new or changed concepts and codes, via a central portal.

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what research the National Institute for Health and Care Research is undertaking on the potential link between Myalgic Encephalomyelitis and long covid.

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

The Government has invested more than £50 million into 22 research projects for long COVID, through the National Institute for Health and Care Research (NIHR) and UK Research and Innovation.

In the last five years, the NIHR has allocated approximately £3.44 million to support nine research projects on myalgic encephalomyelitis (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.

The Department commissions research through the NIHR. It is not currently specifically funding research on potential links between ME and long COVID, but it welcomes funding applications for research into any aspect of human health.

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.

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Found: site erythema 1 0 Application site rash 1 0 Asthenic conditions Asthenia 38 0 Chronic

Question

To ask the Scottish Government whether it will provide an update on funding commitments for the research priorities identified in the report of the James Lind Alliance's Priority Setting Partnership for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which was published in May 2022.

Answered by Minto, Jenni - Minister for Public Health and Women's Health

The Scottish Government has no plans to create specific funding commitments for the research priorities identified in the report of the JLA PSP on ME/CFS

Within the Scottish Government, funding of Health and Care Research comes under the remit of the Chief Scientist Office (CSO).

The CSO's Translational Clinical Studies (TCS) Committee and Health Improvement, Protection and Services Research (HIPS) Committee each meet twice per year to consider funding applications. Details of the application process are published on the CSO website.

https://www.cso.sc ot.nhs.uk/grant-funding/response-mode-funding-schemes/

Applications on the underlying causes, diagnosis, treatment and management of ME/CFS are welcomed. Any such applications would go through CSO's standard independent expert review process to allow funding decisions to be made.

Through UK-wide funding agreements, researchers based in Scotland are able to access research funding programmes administered by the National Institute for Health & Care Research (NIHR). Within their individual remits, these programmes can consider applications for research in ME/CFS. CSO is working with the health research community in Scotland to ensure awareness of these opportunities and to maximise the number of high quality applications from Scotland to the NIHR research funding programmes going forward.

Question

To ask the Scottish Government what plans it has to improve the quality of prevalence data on the number of people in Scotland with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), in light of its publication of experimental statistics in December 2022 in the report, Neurological Conditions: estimating the prevalence in Scotland of selected conditions using General Practice and Hospital Admissions datasets.

Answered by Minto, Jenni - Minister for Public Health and Women's Health

National Services Scotland are currently developing a Primary Care Data and Intelligence platform, which will provide a modern digital infrastructure to unlock the value of data from general practice, including prevalence data on neurological conditions. The platform will be delivered by March 2026, in line with commitments in the Care in the digital age: Delivery plan 2023-24 .