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: Ruskell, Mark (Scottish Green Party - Mid Scotland and Fife)
Question
To ask the Scottish Government what the outcome was of the pilot of the NHS Education for Scotland training module on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Answered by Minto, Jenni - Minister for Public Health and Women's Health
NHS Education for Scotland expect this module to be ready for publishing on their website and available to members by June 2024. Updates will be detailed in their newsletter to Practice Based Small Group Learning (PBSGL) members.
Asked by: Macpherson, Ben (Scottish National Party - Edinburgh Northern and Leith)
Question
To ask the Scottish Government, further to the answer to the third supplementary to question S6O-02854 by Jenni Minto on 7 December 2023, what its response is to the reported concerns of myalgic encephalomyelitis (ME) organisations and people with ME regarding the way that the Scottish Good Practice Statement (SGPS) on ME-CFS was updated, including concerns that the key recommendations from the National Institute for Health and Care Excellence (NICE) guideline were not inserted into the updated SGPS.
Answered by Minto, Jenni - Minister for Public Health and Women's Health
We published a partial update of the Scottish Good Practice Statement on ME/CFS on the Scottish Government website in February 2023. This incorporated key recommendations from the NICE 2021 guidance on a broad range of topics such as energy management and Graded Exercise Therapy; Cognitive Behavioural Therapy; diagnosis and care of children and young people; and severity scale of illness.
The statement also includes updated information on social security and social care in Scotland and an appendix of useful resources and contacts provided by Action for ME and other partners.
Asked by: Mochan, Carol (Scottish Labour - South Scotland)
Question
To ask the Scottish Government, further to the answer to question S6W-08992 by Humza Yousaf on 17 June 2022, what it has done to support NHS boards to test the introduction of models of care for long COVID, and how this has benefitted the management of other long-term and complex conditions, including Myalgic Encephalomyelitis (ME).
Answered by Minto, Jenni - Minister for Public Health and Women's Health
We have established a £10 million long COVID Support Fund, which aims to support NHS Boards to increase the capacity of existing services providing support to people with long COVID, develop these into more clearly defined pathways and to provide a more co-ordinated experience for those accessing support.
We have also commissioned NHS National Services Scotland to establish a National Strategic Network for long COVID. This brings together representatives from NHS Boards across Scotland to provide a forum for the exchange of learning and best practice in delivering supporting and services for people with long COVID.
In May 2023 we published an analysis of survey responses from NHS Scotland Boards on their arrangements for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) care. This is accessible at https://www.gov.scot/publications/myalgic-encephalomyelitis-chronic-fatigue-syndrome-cfs-services-scotland-findings-analysis-surveys-issued-nhs-boards-autumn-2022/ . The report highlights examples noted by NHS Boards of where practice developments relating to ME/CFS and long COVID respectively may have mutually supportive benefits for patient care, and the management of other long term conditions which share common symptoms.
Asked by: Ruskell, Mark (Scottish Green Party - Mid Scotland and Fife)
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.
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.