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.
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 assessment she has made of the potential merits of increasing public funding for research into 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.
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 progress her Department has made on implementing the interim delivery plan on myalgic encephalomyelitis and chronic fatigue syndrome; and if she has an expected timeline on when the plan will be fully implemented.
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/chronic fatigue syndrome (ME/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/CFS community and to highlight any significant gaps where further action may be necessary.
We will publish the final delivery plan in due course.
Asked by: Jim Shannon (Democratic Unionist Party - Strangford)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the likelihood of a connection between myalgic encephomyalitis and long covid.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
No assessment has been made. Whilst myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID are similar in presentation, they are distinct conditions.
The National Institute for Health and Care Excellence currently recommends separate pathways for the assessment, treatment, and management of ME/CFS and the long-term effects of COVID-19.