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: 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 steps she is taking to raise awareness of myalgic encephalomyelitis amongst GPs and other doctors.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
General Practitioners and other doctors are responsible for ensuring their clinical knowledge remains up-to-date as part of their continuing professional development.
The National Institute for Health and Care Excellence (NICE) published an updated guideline on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) in October 2021, to improve awareness and understanding about ME/CFS. This guideline includes recommendations on diagnosis and management. NICE promotes its guidance via its website, newsletters and other media.
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: 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 (a) organisations and (b) individuals his Department has consulted as part of the development of the delivery plan on myalgic encephalomyelitis and chronic fatigue syndrome.
Answered by Gillian Keegan - Secretary of State for Education
We are currently unable to provide this information requested as it relates to the formulation of Government policy. However, to date we have engaged people with lived experience of those with myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS) and carers, staff working in specialist ME/CFS services, relevant charities, other specialist organisations, academic experts, professional membership organisations, other relevant bodies and representatives from the devolved administrations and other Government departments. Further information will be provided in due course.
Asked by: Lloyd Russell-Moyle (Labour (Co-op) - Brighton, Kemptown)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to his written ministerial statement of 12 May 2022 on Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, if he will take steps to ensure that representatives of the British Association of Clinicians in ME/CFS are consulted on policy proposals in the context of its expertise in assessing and managing patients; and if he will make a statement.
Answered by Gillian Keegan - Secretary of State for Education
Officials are working with a range of stakeholders, including the British Association of Clinicians in ME/CFS, to develop a cross-Government delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome.
Asked by: Holly Mumby-Croft (Conservative - Scunthorpe)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to improve awareness among NHS staff of the (a) symptoms and (b) treatment of Myalgic Encephalomyelitis.
Answered by Gillian Keegan - Secretary of State for Education
On 12 May 2022, we announced the intention to develop a cross-Government delivery plan on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for England, which will include a theme on awareness and the education of staff. The delivery plan will align with the work of the National Institute for Health and Care Excellence (NICE), which published a guideline for health and social care professionals on the diagnosis and management of ME/CFS in October 2021 and a guideline implementation statement in May 2022. Whilst NICE guidelines are not mandatory, clinicians and commissioners are expected to take this guidance fully into account and ensure implementation over time. NICE promotes its guidance online and via newsletters and other media.
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, if he will provide additional support for young people suffering with ME.
Answered by Gillian Keegan - Secretary of State for Education
Health services for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), including those for young people, are commissioned locally by clinical commissioning groups. The National Institute for Health and Care Excellence (NICE) updated its guideline on ME/CFS in October 2021 and published an implementation statement in May 2022. The guideline provides advice on diagnosis and support to manage ME/CFS, including for children and young people.
On 12 May 2022, we announced the intention to develop a cross-Government delivery plan on ME/CFS. We are working with other departments and stakeholders to review support for young people with ME/CFS and will consider any additional measures.
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.