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 the services available to people with 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.
Asked by: Tanmanjeet Singh Dhesi (Labour - Slough)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department has taken to ensure that the National Institute for Health and Care Excellence guidelines, published in April 2021, on treating and caring for people with ME, are being implemented across the NHS effectively.
Answered by Gillian Keegan - Secretary of State for Education
The Government is funding research into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through the National Institute for Health Research and the Medical Research Council. Current research projects include DecodeME, looking into the causes of the condition. In November 2021, we met with a group of research experts on ME/CFS and continue to work with stakeholders to consider how best to support continued research. NHS England and NHS Improvement are also collaborating with stakeholders, including Versus Arthritis, to coordinate support for people with chronic long-term pain conditions. The National Institute for Health and Care Excellence (NICE) published its guideline on chronic pain in April 2021, which is available at the following link:
https://www.nice.org.uk/guidance/ng193
NICE published its guideline on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS in October 2021, which is available at the following link:
http://www.nice.org.uk/guidance/ng206
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.
Asked by: Tanmanjeet Singh Dhesi (Labour - Slough)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve NHS treatment and support for people with (a) ME, (b) chronic fatigue syndrome and (c) other chronic long-term pain conditions.
Answered by Gillian Keegan - Secretary of State for Education
The Government is funding research into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) through the National Institute for Health Research and the Medical Research Council. Current research projects include DecodeME, looking into the causes of the condition. In November 2021, we met with a group of research experts on ME/CFS and continue to work with stakeholders to consider how best to support continued research. NHS England and NHS Improvement are also collaborating with stakeholders, including Versus Arthritis, to coordinate support for people with chronic long-term pain conditions. The National Institute for Health and Care Excellence (NICE) published its guideline on chronic pain in April 2021, which is available at the following link:
https://www.nice.org.uk/guidance/ng193
NICE published its guideline on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS in October 2021, which is available at the following link:
http://www.nice.org.uk/guidance/ng206
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.
Asked by: Alex Sobel (Labour (Co-op) - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that NHS staff providing medical and personal care to ME and long covid patients are aware of the harmful impact of inappropriate exercise, over-exertion and exposure to light, sound, touch and new environments on those patients.
Answered by Gillian Keegan - Secretary of State for Education
The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing guidance for the health and care system. NICE published its updated guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) on 29 October 2021, which contains recommendations on energy management, rest and sleep. Additionally, the guideline advises that discussions should take place with those who require inpatient care on whether any aspects of the location of their care could cause difficulties, including environmental factors such as lighting, sound, heating and smells. NICE is working with system partners to support the implementation of the guideline for ME/CFS. The full guidance is available at the following link:
https://www.nice.org.uk/guidance/ng206
The NICE guideline for the long-term effects of COVID-19 considers careful self-pacing of exercise to be an important element of self-management. However, NICE concluded that in the absence of evidence relating to those with ongoing symptoms, it could not make specific recommendations. It has agreed to include a research recommendation to determine the effectiveness of exercise interventions for this population.
Asked by: Hywel Williams (Plaid Cymru - Arfon)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he has plans to fund research into mitochondria cells and the effect upon them in relation to sufferers of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome; and if he will make a statement.
Answered by Maria Caulfield - Parliamentary Under Secretary of State (Department for Business and Trade) (Minister for Women)
The Department funds research through the National Institute for Health Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health, including myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). However, it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality. We will continue to work with stakeholders to consider how best to support continued research into ME/CFS.
Asked by: Janet Daby (Labour - Lewisham East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he has made a recent assessment of the potential merits of increasing funding for research into ME and Chronic Fatigue Syndrome.
Answered by Edward Argar - Minister of State (Ministry of Justice)
The Government invests in health research through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC), through UK Research and Innovation. The NIHR and MRC both welcome high-quality applications for research into all aspects of myalgic encephalomyelitis (ME), otherwise known as chronic fatigue syndrome (CFS). No assessment has been made of the merits of increasing funding for research into ME/CFS. While it is not usual practice for the NIHR and MRC to ring-fence funds for particular topics or conditions, the MRC has had a cross-board highlight notice on CFS/ME open since 2003.
Asked by: Alex Norris (Labour (Co-op) - Nottingham North)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how much Government funding has been provided to ME research in each of the last three years.
Answered by Edward Argar - Minister of State (Ministry of Justice)
The following table shows the funding for research into myalgic encephalomyelitis through the National Institute for Health Research and UK Research and Innovation in the last three years.
Financial Year | £ |
2018-19 | £862,212 |
2019-20 | £691,516 |
2020-21 | £907,848 |
Asked by: Claire Hanna (Social Democratic & Labour Party - Belfast South)
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 ensure that clinical studies for (a) ME, chronic fatigue syndrome and (b) long-covid are conducted using appropriate outcome criteria.
Answered by Edward Argar - Minister of State (Ministry of Justice)
The National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI) have invested in research into myalgic encephalomyelitis, chronic fatigue syndrome and ‘long’ COVID-19. All research commissioned by the NIHR and UKRI is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact.
Asked by: Rachael Maskell (Labour (Co-op) - York Central)
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 lightning process for people who have myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS).
Answered by Edward Argar - Minister of State (Ministry of Justice)
The Department funds research through the National Institute for Health Research (NIHR). The NIHR has not funded specific research into the lightening process for people with myalgic encephalomyelitis or chronic fatigue syndrome.
Asked by: Darren Jones (Labour - Bristol North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to increase biomedical research on the causes and treatment of myalgic encephalomyelitis in the UK.
Answered by Edward Argar - Minister of State (Ministry of Justice)
The Department funds research through the National Institute for Health Research (NIHR). In 2020, the NIHR and the Medical Research Council, through UK Research and Innovation, came together to fund the world’s largest genome-wide association study of myalgic encephalomyelitis (ME), sometimes referred to as Chronic Fatigue Syndrome (CFS). This £3.2 million study, ‘DecodeME’, will analyse samples from 20,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. DecodeME is a partnership between biomedical scientists at the University of Edinburgh and ME/CFS charities and people with lived experience of ME/CFS. It is hoped that the outcomes of this study will aid the development of diagnostic tests and targeted treatments.