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 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.
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: John McDonnell (Labour - Hayes and Harlington)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment she has made of the potential merits of (a) improving and (b) adapting the SNOMED CT classification system in primary care when diagnosing suspected myalgic encephalomyelitis.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
NHS England has not undertaken an assessment of the coding for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Whilst we are unable to estimate the numbers of patients misdiagnosed or missed, the National Institute for Health and Care Excellence guideline NG206 estimates that there are over 250,000 people in England and Wales with ME/CFS. The guideline is available at the following link:
https://www.nice.org.uk/guidance/ng206
Asked by: John McDonnell (Labour - Hayes and Harlington)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if she will make an estimate of the number of patients with suspected myalgic encephalomyelitis that have been (a) misdiagnosed and (b) missed due to the SNOMED CT classification system in primary care.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
NHS England has not undertaken an assessment of the coding for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Whilst we are unable to estimate the numbers of patients misdiagnosed or missed, the National Institute for Health and Care Excellence guideline NG206 estimates that there are over 250,000 people in England and Wales with ME/CFS. The guideline is available at the following link:
https://www.nice.org.uk/guidance/ng206
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of the adequacy of myalgic encephalomyelitis/chronic fatigue syndrome services commissioned by (1) Norfolk and Waveney, and (2) Suffolk and North East Essex, Integrated Care Board.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis / 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 guidance on ME/CFS diagnosis and management, published in October 2021. A copy of the guidance is attached.
The Government has been consulting on ‘My Full Reality’, the cross-Government interim delivery plan on ME/CFS, which seeks to improve the experiences and outcomes of people living with this condition. The plan contains a series of actions to improve access to specialist ME/CFS services. The final plan will be published in due course.
The Government has made no assessment of the ME/CFS services commissioned by Norfolk and Waveney, and Suffolk and North East Essex ICBs.
Asked by: Baroness Scott of Needham Market (Liberal Democrat - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to (1) ensure people with myalgic encephalomyelitis (ME) have access to specialist ME/chronic fatigue syndrome services, and (2) increase funding available for such services.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
Integrated care boards (ICBs) are responsible for commissioning specialist myalgic encephalomyelitis / 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 guidance on ME/CFS diagnosis and management, published in October 2021. A copy of the guidance is attached.
The Government has been consulting on ‘My Full Reality’, the cross-Government interim delivery plan on ME/CFS, which seeks to improve the experiences and outcomes of people living with this condition. The plan contains a series of actions to improve access to specialist ME/CFS services. The final plan will be published in due course.
The Government has made no assessment of the ME/CFS services commissioned by Norfolk and Waveney, and Suffolk and North East Essex ICBs.
Asked by: John McDonnell (Labour - Hayes and Harlington)
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 help facilitate research into the (a) causes and (b) treatment of Myalgic Encephalomyelitis.
Answered by Andrew Griffith - Minister of State (Department for Science, Innovation and Technology)
Since 2012, UK Research and Innovation (UKRI)’s Medical Research Council (MRC) has awarded £6.2 million for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This includes DecodeME, a significant strategic initiative co-funded by the National Institute of Health and Care Research in 2020, which aims to find genetic causes of ME/CFS in order to better understand the disease and ultimately to find treatments.
The Government works with the ME/CFS Priority Setting Partnership to identify research priorities in this area and MRC has an open highlight notice to encourage ME/CFS research.