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 .
Mar. 14 2024
Source Page: Freedom of Information responses from the MHRA - week commencing 4 December 2023Found: Abbreviation or special termExplanation ACO Addendum to the Clinical Overview ADEM Acute Disseminated Encephalomyelitis
Mar. 14 2024
Source Page: Freedom of Information responses from the MHRA - week commencing 4 December 2023Found: Myalgic Encephalomyelitis MedDRA Medical Dictionary for Regulatory Activities MELAS Mitochondrial Encephalopathy
Asked by: Sharon Hodgson (Labour - Washington and Sunderland West)
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.
Asked by: Sharon Hodgson (Labour - Washington and Sunderland West)
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.
Asked by: Sharon Hodgson (Labour - Washington and Sunderland West)
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.
Asked by: Sharon Hodgson (Labour - Washington and Sunderland West)
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.
Asked by: Sharon Hodgson (Labour - Washington and Sunderland West)
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.
Asked by: Sharon Hodgson (Labour - Washington and Sunderland West)
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.
Asked by: Webber, Sue (Scottish Conservative and Unionist Party - Lothian)
Question
To ask the Scottish Government what it is doing to address the gaps in service provision for people with ME, as identified in the report, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Services in Scotland: Findings from an analysis of surveys issued to NHS Boards in Autumn 2022, published in May 2023.
Answered by Minto, Jenni - Minister for Public Health and Women's Health
Our published analysis of health board data on ME/CFS care has established a clearer picture of the variation in service provision around Scotland.
We are considering these findings in identifying areas where there is the potential to further explore or support aspects of service development, and the resource required to do this.
In doing so, we are seeking to ensure that learning from the introduction of models of care for Long COVID is used to benefit the management of other long-term and complex conditions, including ME/CFS, where appropriate.