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.
Apr. 04 2024
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Mar. 28 2024
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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.
Mar. 25 2024
Source Page: Digital skills, channel preference, and access needs: Personal Independence Payment customersFound: condition (61%) or other conditions and disabilities (67%) like problems due to alcohol or other drugs, or fatigue
Mar. 25 2024
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Mar. 21 2024
Source Page: Flagship youth employment programme hits one million milestoneFound: Status syndrome . Bloomsbury, London. Marmot M, Wilkinson RG. 2006.
Mar. 19 2024
Source Page: FOI responses published by MOD: week commencing 18 March 2024Found: (Accessed Sep 16). 4-N-3 JSP 950 Lft 6 -7-7 (V1. 6 Aug 19) Chronic fatigue syndrome and associated
Asked by: Mundell, Oliver (Scottish Conservative and Unionist Party - Dumfriesshire)
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 .