Asked by: Paul Beresford (Conservative - Mole Valley)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how much Government funding was allocated to biomedical research into myalgic encephalomyelitis in the financial years (a) 2017-18, (b) 2018-19 and (c) 2019-20.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
The following table shows how much Government funding was allocated to biomedical research into myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS) for financial years 2017-18, 2018-19 and 2019-20.
Financial Year | £ |
2017-18 | 226,470 |
2018-19 | 396,467 |
2019-20 | 443,719 |
In addition to the funding set out above, the National Institute for Health Research, funded through the Department, and the Medical Research Council have recently announced a £3.2 million award to fund research into potential genetic connections to ME/CFS. The project will analyse samples from 20,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.
Asked by: Stephen Morgan (Labour - Portsmouth South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will make an assessment of the effect of recent changes in the level of funding for research into myalgic encephalomyelitis on clinical understanding of that condition.
Answered by Caroline Dinenage
Between 2010-11 to 2018-19, the National Institute for Health Research (NIHR) and the UK Research Innovation have funded £6,976,001 of research on myalgic encephalomyelitis, also referred to as chronic fatigue syndrome (ME/CFS).
While funding fluctuates in response to projects funded, spend on ME/CFS has remained stable in recent years, ranging from around £700-850,000. Given that funding has remained stable, no assessment has been made about the impact of change in the level of research funding.
Asked by: Stephen Morgan (Labour - Portsmouth South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how much money from the public purse has been allocated to funding research on myalgic encephalomyelitis since 2010.
Answered by Caroline Dinenage
Between 2010-11 to 2018-19, the National Institute for Health Research (NIHR) and the UK Research Innovation have funded £6,976,001 of research on myalgic encephalomyelitis, also referred to as chronic fatigue syndrome (ME/CFS).
While funding fluctuates in response to projects funded, spend on ME/CFS has remained stable in recent years, ranging from around £700-850,000. Given that funding has remained stable, no assessment has been made about the impact of change in the level of research funding.
Asked by: Countess of Mar (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask Her Majesty's Government what processes are in place to safeguard children with chronic fatigue syndrome and other disorders whose parents have enrolled them on Lightning Process courses; and what evaluation has been undertaken of the (1) benefits, and (2) harms, to those children who have participated in such courses.
Answered by Baroness Blackwood of North Oxford
The Lightning Process (LP) is not offered as a part of the chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) standard treatments on the National Health Service. Subject to the nature of the safeguarding concerns, issues should be directed to the relevant professional regulator, should the practitioner be a member of a registered profession; the local authority (trading standards office or children’s service), if false claims are being made about the effectiveness of the treatment or welfare of a child is a concern; or the police, if a crime is involved.
The LP involves a course of three half-days of training aiming to teach participants how to use their brain to improve their body's health.
A randomised controlled trial with 100 adolescents aged 12-18 was undertaken by researchers in Bristol. Participants were randomised into two groups: those who received standard CFS/ME treatment and those who received the standard treatment plus the LP.
Researchers found those who received the LP had better physical function, were less tired and less anxious after six months. At 12 months, they had further improvement in physical function, and improved depression scores and school attendance. This research trial had several limitations as set out in the peer reviewed journal article. This was a very small trial and so it would need to be repeated in a much larger group to demonstrate more generalisable findings. Participants were not blinded so their self-reported outcomes might have been biased, for example participants may have been more likely to report positive outcomes because they knew they were getting additional therapy in the LP group. Of all those eligible to participate in the trial, fewer than 30% agreed to take part. Participants in the trial did not have any serious adverse events attributable to either LP or usual care. LP therapy was given in addition to the usual CFS/ME care as a no-treatment control group was not deemed ethical, therefore it cannot be suggested as a replacement for current specialised medical care.
Independent ethical review ensures that participant safety is at the centre of all research. In the United Kingdom, review by an ethics committee is one of a series of safeguards intended to protect the people taking part in the research. The operating procedure for trials in the UK has inbuilt safeguards designed to protect patients from harm in the event an intervention is ineffective or potentially harmful. Participants are free to withdraw from a study at any time.
Asked by: Chris Williamson (Independent - Derby North)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he make an assessment of the potential merits of ring-fencing funding for high-quality ME research as the Government has done for dementia and brain cancer.
Answered by Caroline Dinenage
The Department for Health and Social Care funds research through the National Institute for Health Research (NIHR). The Government also supports research relating to myalgic encephalomyelitis (ME) through the Medical Research Council (MRC), part of the Department for Business, Environment and Industrial Strategy partner organisation, UK Research and Innovation. Both the NIHR and the MRC welcome funding applications for research into any aspect of human health, including ME; it is not usual practice to ring-fence funds for particular topics or conditions. Applications to the NIHR and the MRC 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.
Research into chronic fatigue syndrome CFS/ME is an area of strategic importance for the MRC and the only medical condition for which the MRC has a dedicated Highlight Notice which identifies areas where proposals are particularly encouraged. These include proposals which have a focus on the underpinning mechanisms of ME/CFS, with priority areas including immune dysregulation; pain; improved sub-phenotyping and stratification of ME/CFS; and mechanisms of ME/CFS in children and young people.
Asked by: Baroness Morgan of Cotes (Conservative - Life peer)
Question to the Department for Business, Energy and Industrial Strategy:
To ask the Secretary of State for Business, Energy and Industrial Strategy, what assessment he has made of the potential merits of ring-fencing Medical Research Council funds for biomedical research on myalgic encephalomyelitis (ME) in order to ensure that overall research funding for ME is proportional to that spent on research into similarly prevalent health conditions.
Answered by Chris Skidmore
I refer my rt. hon. Friend to the answer I gave to my hon. Friend the Member for North West Norfolk on 20th March 2019 to Question 231931.
Asked by: Adrian Bailey (Labour (Co-op) - West Bromwich West)
Question to the Department of Health and Social Care:
What recent progress has been made on the treatment of myalgic encephalomyelitis.
Answered by Caroline Dinenage
In September 2017, the National Institute for Health and Care Excellence announced its plans for a full update to the existing clinical guideline on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) to ensure that treatment reflects the latest available evidence. The revised guideline will be published in 2020.
Since 2011, we have also invested £6 million into research into CFS/ME via the Medical Research Council and the National Institute for Health Research.
Asked by: Lord Bellingham (Conservative - Life peer)
Question to the Department for Business, Energy and Industrial Strategy:
To ask the Secretary of State for Business, Energy and Industrial Strategy, what assessment he has made of the potential merits of ring-fencing Medical Research Council funds for biomedical research into ME in order to ensure that overall research funding for ME is proportional to that spent on research into similarly prevalent health conditions.
Answered by Chris Skidmore
The Medical Research Council (MRC) is part of the BEIS partner organisation, UK Research and Innovation. The MRC supports research relating to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in response to high-quality proposals from the research community.
The MRC does not generally ring-fence funding for specific conditions, however CFS/ME is an identified priority area for the MRC. Proposals are particularly encouraged in areas that explore the underpinning mechanisms of CFS/ME (including immune dysregulation), pain, improved sub-phenotyping and stratification of CFS/ME disease, and mechanisms of CFS/ME in children.
All proposals are subject to peer review and judged in open competition, with awards being made according to their scientific quality and importance to human health.
Asked by: Sharon Hodgson (Labour - Washington and Sunderland West)
Question to the Department for Business, Energy and Industrial Strategy:
To ask the Secretary of State for Business, Energy and Industrial Strategy, how many grant applications have been made to the Medical Research Council for ME/CFS related research since 2010; how many of those applications have been awarded funding; and if he will make a statement.
Answered by Chris Skidmore
Since 2009/10, the Medical Research Council (MRC) has received 32 research proposals relating to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), seven of which have been funded.
The MRC supports research in response to proposals from the research community. High quality applications on any aspect of human health are always welcomed and awards are made according to their scientific quality and importance to 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, how much funding his Department has allocated to ME/CFS for (a) biopsychological and (b) biopsychosocial research in each year since 2010; and if he will make a statement.
Answered by Caroline Dinenage
We do not hold the information requested on funding for myalgic encephalitis/chronic fatigue syndrome (ME/CFS) research according to biopsychological, biopsychosocial and biomedical research.
The following table shows information provided by the National Institute for Health Research (NIHR) on Departmental programme research funding for ME/CFS, per year, since financial year 2010-11. Further information on this research is available through the NIHR Journals Library at the following link:
https://www.journalslibrary.nihr.ac.uk/programmes/
Financial Year | £ |
2010-11 | 189,438 |
2011-12 | 381,874 |
2012-13 | 501,461 |
2013-14 | 561,950 |
2014-15 | 426,055 |
2015-16 | 475,676 |
2016-17 | 554,785 |
2017-18 | 464,902 |
The NIHR welcomes funding applications for research into any aspect of human health, including ME/CFS; 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.