Asked by: Alexander Stafford (Conservative - Rother Valley)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department has commissioned research into the (a) causation and (b) treatment of children with chronic fatigue syndrome.
Answered by Will Quince
The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR is funding four research projects with a specific focus on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in children, with a combined funding value of approximately £1.5 million. Between them, these projects are focussed on characterising ME/CFS in children and developing and identifying potential treatments, rather than elucidating an underlying cause. More broadly, the NIHR has provided approximately £4.4 million for research on ME/CFS since 2011. The NIHR welcomes applications for research into ME/CFS causation and treatment in children.
Asked by: Tulip Siddiq (Labour - Hampstead and Kilburn)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how much his Department plans to spend on biomedical research into the (a) causes, (b) consequences and (c) treatment of Myalgic encephalomyelitis in 2022-23.
Answered by Will Quince
The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR has provided approximately £4.4 million for research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) since 2011. In addition, the NIHR and the Medical Research Council have jointly funded a £3.2 million study into genetics and ME/CFS. The study will analyse samples from 25,000 people with ME/CFS to search for genetic differences which may indicate underlying causes or an increased risk of developing the condition.
Asked by: Baroness Kennedy of Cradley (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made, if any, of the work by Precision Life into possible genetic risk factors associated with chronic fatigue syndrome.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
No specific assessment has been made. However, we are funding research to understand the genetic risk factors relating to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The National Institute for Health and Care Research and the Medical Research Council fund a £3.2 million study, ‘DecodeME’, to analyse samples from 25,000 people with ME/CFS to identify any genetic differences which may indicate underlying causes or an increased risk of developing the condition.
Asked by: Alex Sobel (Labour (Co-op) - Leeds North West)
Question to the Department for Work and Pensions:
To ask the Secretary of State for Work and Pensions, whether she has plans to revise the assessment process for Personal Independence Payment to make it more accessible for those who live with ME or CFS by ensuring assessors are specially trained to understand the condition.
Answered by Victoria Prentis - Attorney General
Assessment providers are required to ensure that all health professionals (HPs) carrying out Personal Independence Payment (PIP) assessments have training and knowledge of the clinical aspects and overall functional effects of a wide range of health conditions and impairments. The department does not believe that it is necessary for the provider to deploy HPs who are specialists in the specific conditions or impairments of the individuals they are assessing. Instead, the focus is on ensuring that HPs are experts in disability analysis, emphasising on the effects of health conditions and impairments on the claimant's daily life.
HPs can access a wide range of clinical resources to research any conditions presented. This includes evidence-based protocols, e-learning modules or case studies, as well as keeping knowledge up to date through Continuous Professional Development (CPD). Both PIP providers have a condition insight report on Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), and CPD modules for their HPs on the condition.
Claimants with ME/CFS are able to access PIP in the same way as other people with long-term health conditions or disabilities. DWP is committed to improving our services and works continuously with providers to improve the assessment process. The Shaping Future Support: The Health and Disability Green Paper, explored how the welfare system can better meet the needs of claimants now and in the future, by improving claimant experience of our services, enabling independent living, and improving employment outcomes. We are considering all the responses to the Green Paper proposals and are considering what future policy changes might look like. These will be set out in the White Paper later this year.
Asked by: Caroline Lucas (Green Party - Brighton, Pavilion)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to the Written Statement of 12 May 2022, HCWS23 on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Announcements, whether representatives of the British Association of Clinicians in ME/CFS will be attending his forthcoming roundtable; and if he will make a statement.
Answered by Gillian Keegan - Secretary of State for Education
The roundtable on research priorities for Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) took place on 9 June. It was attended by members of the academic community, research charities and people with lived experience. The discussion will inform the newly convened UK Clinical Research Collaboration ME/CFS research subgroup. A representative from the British Association of Clinicians in ME/CFS will participate in this subgroup.
Asked by: Virginia Crosbie (Conservative - Ynys Môn)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will increase funding for research into myalgic encephalomyelitis; and what steps he is taking to meet the additional needs of people living with myalgic encephalomyelitis and other similar chronic conditions.
Answered by Gillian Keegan - Secretary of State for Education
The Department has asked the UK Clinical Research Collaboration to convene a subgroup on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) with a range of stakeholders, including research funders, to ensure high quality applications for research into ME/CFS and support the research community to build capacity and capability.
On 12 May 2022, we announced the intention to develop a cross-Government Delivery Plan for ME/CFS in England. The delivery plan will build on the recommendations of the ME/CFS Priority Setting Partnership and the recently updated guideline from the National Institute for Health and Care Excellence to ensure that people living with ME/CFS have the appropriate support.
NHS England and NHS Improvement are establishing a task and finish group to produce guidance on the provision of high-quality services for people living with long term pain by September 2022. The guidance is aimed at integrated care systems to provide core principles which can be used to inform the development of local models of care to support people living with chronic pain.
Asked by: Vicky Foxcroft (Labour - Lewisham, Deptford)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment he has made of the long-term impact of covid-19 on individuals with a diagnosis of (a) myalgic encephalomyelitis or (b) chronic fatigue syndrome.
Answered by Gillian Keegan - Secretary of State for Education
No specific assessment has been made. The National Institute for Health Research has funded studies to improve the understanding of and address the longer-term effects of COVID-19. Currently there are no published findings on the long term impact of COVID-19 in people with a diagnosis of myalgic encephalomyelitis or chronic fatigue syndrome from these studies.
Asked by: Baroness Ritchie of Downpatrick (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government whether they have plans to provide additional funding for Myalgic Encephalomyelitis (ME) research; and if so, when.
Answered by Lord Kamall
No specific assessment of the services available to people with myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) has been made. Clinical commissioning groups are best placed to plan, assess and commission ME/CFS care services. These processes are subject to local prioritisation and funding and should take into account best practice guidance, such as the National Institute for Health and Care Excellence’s (NICE) most recent guidelines. Whilst guidelines are not mandatory, clinicians and commissioners are expected to take them fully into account in designing services that meet the needs of their local population and to work towards their implementation over time.
We continue to consider options to improve outcomes for people with ME/CFS and their families, including the potential development of a national strategy. The Government invests in health research through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC). The NIHR and MRC welcome high-quality applications for research into all aspects of ME/CFS. While there are no plans to provide additional funding at this time, both funders are considering how they can support the academic community to drive research in this underserved area.
Asked by: Baroness Ritchie of Downpatrick (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what assessment they have made of whether the new National Institute for Health and Care Excellence Guidance for Myalgic Encephalomyelitis (ME) is being implemented in accordance with the regulations.
Answered by Lord Kamall
No specific assessment of the services available to people with myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) has been made. Clinical commissioning groups are best placed to plan, assess and commission ME/CFS care services. These processes are subject to local prioritisation and funding and should take into account best practice guidance, such as the National Institute for Health and Care Excellence’s (NICE) most recent guidelines. Whilst guidelines are not mandatory, clinicians and commissioners are expected to take them fully into account in designing services that meet the needs of their local population and to work towards their implementation over time.
We continue to consider options to improve outcomes for people with ME/CFS and their families, including the potential development of a national strategy. The Government invests in health research through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC). The NIHR and MRC welcome high-quality applications for research into all aspects of ME/CFS. While there are no plans to provide additional funding at this time, both funders are considering how they can support the academic community to drive research in this underserved area.
Asked by: Baroness Ritchie of Downpatrick (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what further steps they are taking to develop a national strategy for Myalgic Encephalomyelitis (ME).
Answered by Lord Kamall
No specific assessment of the services available to people with myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) has been made. Clinical commissioning groups are best placed to plan, assess and commission ME/CFS care services. These processes are subject to local prioritisation and funding and should take into account best practice guidance, such as the National Institute for Health and Care Excellence’s (NICE) most recent guidelines. Whilst guidelines are not mandatory, clinicians and commissioners are expected to take them fully into account in designing services that meet the needs of their local population and to work towards their implementation over time.
We continue to consider options to improve outcomes for people with ME/CFS and their families, including the potential development of a national strategy. The Government invests in health research through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC). The NIHR and MRC welcome high-quality applications for research into all aspects of ME/CFS. While there are no plans to provide additional funding at this time, both funders are considering how they can support the academic community to drive research in this underserved area.