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Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)

Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) 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

CFS/ME is currently a highlighted area and a high priority for the MRC. In 2008 we set up the CFS/ME Expert Group to consider how new high-quality research into CFS/ME, and partnerships between researchers already working on CFS/ME and those in associated areas, might be encouraged. This work follows on from the Research Advisory Group set up in 2003 and the joint workshop held with Action for ME in 2006.

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ME/CFS Workshop - 2019

The UK CFS/ME Research Collaborative (CMRC) and the CureME research team - UK ME/CFS Biobank - at London School of Hygiene & Tropical Medicine (LSHTM) have collaboratively identified a research proposal that it is seeking to take forward to the Medical Research Council (MRC) and the National Institute for Health Research (NIHR). To enable the researchers to develop a fully informed and competitive proposal, the MRC/NIHR is supporting a workshop to bring together scientists, charities and patients, to provide recommendations to improve the research proposal. Following this workshop, a research application will be submitted to MRC and NIHR for consideration for funding, following peer review.

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Understanding the mechanisms of CFS / ME – a call for proposals

As part of our continuing commitment to the area, in 2011, a call for proposals made available up to £1.5million for new research into the mechanisms of CFS/ME.

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:

  1. Autonomic dysfunction
  2. Cognitive symptoms
  3. Fatigue
  4. Immune dysregulation (eg through viral infection)
  5. Pain
  6. Sleep disorders

Additionally, the call encouraged capacity building in CFS/ME 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). Click on a member for their declaration of interest.

  • Professor Stephen Holgate (Chairman), University of Southampton – Chair of the MRC’s Population and Systems Medicine Board
  • Professor Malcolm Jackson, University of Liverpool – Member of the MRC’s Population and Systems Medicine Board
  • Professor Frank Kelly, King's College London – Member of the MRC’s Molecular and Cellular Medicine Board
  • Professor Paul Moss, University of Birmingham – Deputy Chair of the MRC’s Infection and Immunity Board
  • Professor Hugh Perry, University of Southampton – Chair Designate of the MRC’s Neurosciences and Mental Health Board
  • Professor Nancy Pedersen, Karolinska Institute, Stockholm – International Member
  • Professor Neil Scolding, University of Bristol – Member of the MRC’s Neurosciences and Mental Health Board

Guidance on assessing the proposals was provided for reviewers (PDF 63KB) (PDF, 62KB) and panel members (PDF 68KB) (PDF, 67KB).

Five projects with a total value of over £1.6m were funded through the call. For details see MRC-funded research projects below.

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MRC CFS/ME Expert Group

The group is chaired by Professor Stephen Holgate, chair of our Population and Systems Medicine Board. The group brings together leading experts in the field of CFS/ME and from associated fields that may be involved in the underlying mechanisms of CFS/ME, in addition to representatives from the charity sector.

Click on a member for their declaration of interest.

  • Professor Stephen Holgate - University of Southampton (Chairman)
  • Professor Jill Belch - University of Dundee
  • Dr Esther Crawley - University of Bristol
  • Professor Philip Cowen - University of Oxford
  • Professor Malcolm Jackson - University of Liverpool
  • Dr Jonathan Kerr - St George’s University of London
  • Professor Ian Kimber - University of Manchester
  • Professor Hugh Perry - University of Southampton
  • Dr Derek Pheby - National CFS/ME Observatory
  • Professor Anthony Pinching - Peninsula Medical School
  • Dr Charles Shepherd - ME Association
  • Sir Peter Spencer - Action for ME
  • Professor Peter White - Bart’s and the London School of Medicine and Dentistry

The aim of the group is to explore ways in which to encourage new research in the CFS/ME field. The group looks at new technologies and associated areas of research that could help inform the diverse range of symptoms and possible underlying causes of CFS/ME.

Terms of reference

  1. To consider and review the status of current research in CFS/ME.
  2. To consider the underlying mechanisms and sub-phenotypes of CFS/ME.
  3. To identify research opportunities incorporating new technologies and conjoint areas and encourage new research towards understanding the basis of CFS/ME.
  4. To produce a framework for conducting high quality CFS/ME research in the future.
  5. To work to achieve clear lines of communication and synergy between all stakeholders with an interest in this area.

Notes from group meetings

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MRC CFS/ME Research Workshop 2009

The MRC held a small research workshop for CFS/ME in 2009.

Papers circulated prior to the meeting:

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MRC CFS/ME prioritisation meeting

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.

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MRC-funded research projects

The Excel and CSV files available below provide information on the MRC’s expenditure on research into CFS/ME from 2004/05 to 2016/17. This information will be updated yearly in September.

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Previous MRC activities

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 CFS/ME. A report of the research summit (PDF) has been published.

2003 research strategy

In 2003 we 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 CFS/ME, 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 CFS/ME could be made without the need to fully understand underlying causes or triggers.

In response to the advisory group’s recommendations we issued a notice highlighting CFS/ME as a strategic priority.

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How does the MRC decide which research proposals to fund?

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. CFS/ME is currently one of our priority areas.

Applications for MRC research grants are highly competitive. During 2008/09 we were only able to fund 86 per cent of proposals rated by the boards as internationally competitive. Proposals that are funded are high-quality, well-focused and clearly presented, and successfully address the three core criteria of assessment:

  1. Importance of the questions, or gaps in knowledge that are being addressed.
  2. Scientific potential of the proposal ie what are the prospects for good scientific progress.
  3. Justification of resources.

Researchers considering submitting a proposal should discuss their plans with MRC head office at an early stage.