Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a complex and debilitating 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
- MRC CFS/ME Expert Group
- Terms of reference
- MRC CFS/ME Research Workshop
- Previous MRC activities
- Current MRC-funded research projects
- How does the MRC decide which research proposals to fund?
Research Strategy
CFS/ME is currently a highlighted area, and is an area that is of high priority for the MRC. In 2008 the MRC set up a new group to consider how the MRC might encourage new high-quality research into CFS/ME and partnerships between researchers already working on CFS/ME and those in associated areas This work follows on from the Research Advisory Group set up in 2003 and the joint workshop held with Action for ME in 2006.
MRC CFS/ME Expert Group
The Group is chaired by Professor Stephen Holgate, chair of the MRC Population and Systems Medicine Board and brings together leading experts in the CFS/ME, from associated fields that may be involved in the underlying mechanisms of CFS/ME and from the charity sector:
- 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
For declarations of interests for members of the Expert Group please see ‘Declarations of Interest’.
The aim of the Group is to look at new ways of encouraging new research in the CFS/ME field not only by looking at new technologies but also at associated areas that could help inform on the diverse range of symptoms and possible underlying causes of CFS/ME.
The terms of reference of the Group can be found below.
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 of the Expert Group meetings can be found following the links below:
- 1st Meeting of the CFS/ME Expert Group – 15th December 2008
- 2nd Meeting of the CFS/ME Expert Group – 30th March 2009
MRC CFS/ME Research Workshop
The MRC held a small research workshop for CFS/ME on the 19 and 20th November 2009. The agenda, papers and meeting participants can be found at the links below
Papers circulated prior to the meeting:
- CFS/ME Literature review Jan 2004 – June 2009
- Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome: Lombardi VC et al. Science. 2009 326:585-9
Note of the Workshop – to follow.
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 has been published and is available from the AfME website (www.afme.org.uk).
2003 MRC 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 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 the MRC issued a notice highlighting CFS/ME as a current strategic priority. Further details of the notice can be found here.
Current MRC-funded research projects
The MRC currently supports the following projects relating to CFS/ME (as at 1st July 2009):
|
|
|
Dr C Clark |
Queen Mary College, University of London |
General and specific risk markers & preventive factors for chronic fatigue and irritable bowel syndromes |
Dr P White |
Queen Mary College, University of London |
The PACE trial; A RCT of CBT, graded exercise, adaptive pacing and usual medical care for the chronic fatigue syndrome |
Recently completed projects
|
|
|
Professor K Bhui |
Queen Mary College, University of London |
Chronic Fatigue & Ethnicity |
Professor F H Creed |
University of Manchester |
The feasibility of a population based study of CFS, IBS and CWP |
Prof R K Morriss |
University of Liverpool |
Exploratory RCT of training General Practitioners to mange patients with persistent Medically Unexplained Symptoms (MUS) |
Dr A Wearden |
University of Manchester |
Randomised controlled trial of nurse led self-help treatment for primary care patients with chronic fatigue syndrome |
Further information on current research supported by the MRC, which includes CFS/ME can be found on the MRC portfolio.
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 the MRC decides 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.
An MRC research board – 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. Further information on the membership and responsibilities of the MRC’s research boards can be found under Boards, panels and groups.
Applications for MRC research grants are highly competitive, during 2008/09 the MRC was only able to fund 86 per cent of proposals rated by the boards as internationally competitive. Proposals which are funded are high-quality, well-focussed 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 proposals to the MRC are encouraged to discuss their plans with MRC head office at an early stage.
