Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS)
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a complex and serious debilitating medical condition with a diverse range of symptoms. Profound physical and/or mental fatigue is the most well-known, while others include pain, disturbed sleep patterns and gastrointestinal problems. Each patient experiences their own personal combination of symptoms.
- Research strategy
- Understanding the mechanisms of CFS/ME – a call for proposals (2011)
- MRC CFS/ME Expert Group (2008-2010)
- MRC CFS/ME Research Workshop and Prioritisation Meeting (2009)
- Previous MRC activities
- How does the MRC decide which research proposals to fund?
- MRC-funded research projects
Building our portfolio of ME/CFS research has been a high priority for the MRC for a number of years and this area has been supported through a cross-Board highlight notice since 2012. High-quality applications are invited to any of MRC’s Research Boards as appropriate based on scientific or clinical area. In addition to response-mode funding, the MRC continues to support ME/CFS research through a number of strategic initiatives and activities, as outlined below.
In 2020, the Medical Research Council (MRC) and the National Institute for Health Research (NIHR) jointly funded the £3.2m DecodeME study (£1.4m NIHR, 1.8m MRC). The study will analyse samples from 20,000 people with ME/CFS in order to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition. The research will be the world’s largest genome-wide association study (GWAS) of ME/CFS and hopes to aid the development of diagnostic tests and targeted treatments.
The study is led by a collaboration of researchers, people with ME/CFS, carers and advocates, which grew out of the UK CFS/ME Research Collaborative, established in 2013 by Professor Sir Stephen Holgate (University of Southampton).
In 2019 the MRC and NIHR supported a workshop to bring together scientists, charities and patients, to provide recommendations and inform the development of the research proposal. DecodeME was awarded following submission and peer review of this research proposal.
In 2011, a call for proposals made available £1.5million for new research into the mechanisms of ME/CFS.
Research proposals focused on one or more of six priority areas identified by experts in the fields (see below). A key aim of this call was to encourage new and innovative partnerships between researchers already working on CFS/ME and those in associated areas.
The call focused on the following research areas:
- Autonomic dysfunction
- Cognitive symptoms
- Immune dysregulation (eg through viral infection)
- Sleep disorders
Additionally, the call encouraged capacity building in ME/CFS research and the entry of new researchers into the field.
Proposals were assessed by expert peer-review and prioritised for funding by a panel at a prioritisation meeting (PDF, 17KB). The panel consisted of MRC Board Member representatives from the Population and Systems Medicine Board, Infection and Immunity Board, Neurosciences and Mental Health Board and the Molecular and Cellular Medicine Board, with an additional international member.
Five projects with a total value of over £1.6m were funded through the call. For details see MRC-funded research projects below.
The MRC ME/CFS Expert Group brought together leading experts in the field of ME/CFS and from associated fields that may be involved in the underlying mechanisms of ME/CFS, in addition to representatives from the charity sector. The Group was chaired by Professor Sir Stephen Holgate.
The aim of the group was to explore ways in which to encourage new research in the ME/CFS field. The group looked at new technologies and associated areas of research that could help inform the diverse range of symptoms and possible underlying causes of ME/CFS.
Members of the group were involved in various activities in the field, including the 2009 MRC ME/CFS Research Workshop and Prioritisation Meeting (below), informing the strategy for the 2011 MRC ME/CFS call for proposals and establishment of the 2012 MRC ME/CFS highlight notice. Several members of the Group subsequently became members of the UK CFS/ME Research Collaborative (UK CMRC), which was established in 2013.
Notes from group meetings
- 1st meeting of the CFS/ME Expert Group – December 2008 (PDF, 122KB)
- 2nd meeting of the CFS/ME Expert Group – March 2009 (PDF, 38KB)
- 3rd meeting of the CFS/ME Expert Group – March 2010 (PDF, 29KB)
The MRC held a small research workshop for ME/CFS in 2009.
- Agenda (PDF, 45KB)
- Participants (PDF, 42KB)
- Notes (PDF, 3.02MB) (including copy of the presentations from the meeting at annex 1)
Papers circulated prior to the meeting:
- CFS/ME literature review Jan 2004 - June 2009 (PDF, 3.04MB)
- Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome: Lombardi VC et al. Science. 2009 326:585-9
The workshop in 2009 identified an extensive list of research areas that were in need of investigation. Subsequently, we set up a prioritisation group, comprising members of the Expert Group and other workshop attendees, to discuss and prioritise the research topics raised according to short, medium and long-term goals.
Joint Action for ME (AfME) and MRC research summit
In November 2006, Action for ME (AfME) and the MRC held a joint research summit with the aim of stimulating further research into ME/CFS. A report of the research summit (PDF) has been published.
2003 research strategy
In 2003 the MRC set up an advisory group, made up of independent scientists and patient representatives, to develop a research strategy. The advisory group made a number of recommendations, and in particular that in the short term the research community should be encouraged to develop high quality research proposals addressing case definition, understanding of the symptoms of ME/CFS, and new approaches to disease management.
The group believed that significant advances that could impact on the health and quality of life of those with ME/CFS could be made without the need to fully understand underlying causes or triggers.
- Research strategy for CFS/ME – full report (PDF, 400KB)
- Research strategy for CFS/ME – summary report (PDF, 44KB)
In response to the advisory group’s recommendations we issued a notice highlighting ME/CFS as a strategic priority.
All proposals for MRC grant funding are assessed through a two-stage process involving independent expert reviewers and the MRC research boards/panels. The core assessment criteria are the importance of the scientific questions being asked, the research programme’s potential for advancing biomedical science, and the justification for the resources requested.
Usually, applications are assigned to one of the research boards. However, if an application is investigating an area that crosses the remits of the boards, one board will be assigned as the lead and will consider input from the other relevant board. Ideally every research proposal we receive is reviewed by at least three independent scientific experts before we decide whether or not to fund it. These independent reviewers judge the quality of the proposed science, whether it addresses an important health question, and whether the study is appropriately designed to meet its aims. Known as peer review, this process is the internationally recognised method for ensuring quality control in science.
One of our research boards – also made up of independent scientific experts – then considers the external reviewers’ comments, taking account of any MRC strategic priorities before making a final decision. ME/CFS is currently one of our priority areas.
Applications for MRC research grants are highly competitive. Proposals that are funded are high-quality, well-focused and clearly presented, and successfully address the three core criteria of assessment:
- Importance of the questions, or gaps in knowledge that are being addressed.
- Scientific potential of the proposal i.e. what are the prospects for good scientific progress.
- Justification of resources.
Researchers considering submitting a proposal should discuss their plans with MRC head office at an early stage.
The Excel and CSV files available below provide information on the MRC’s expenditure on research into ME/CFS from 2004/05 to 2016/17.
- Medical Research Council – CFSME Research projects from 2004/05 to 2016/17 (XLSX, 20KB)
- Medical Research Council – CFSME Research projects from 2004/05 to 2016/17 (CSV, 5KB)