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Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

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 the MRC set up a new group, 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.

 

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

As part of its continuing commitment to the area, in 2011, the MRC announced a call for proposals that made available up to £1.5M for new research into the mechanisms of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).

 

Research proposals were invited to focus 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
  • Fatigue
  • Immune dysregulation (e.g. through viral infection)
  • Pain
  • Sleep disorders

 

Additionally, the call encouraged capacity building in CFS/ME research and the entry of new researchers into the field.

Full details of the scope of the call for proposals can be found here.

 

Proposals were assessed by expert peer-review prioritised for funding by a Panel which consisted of:

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

Declarations of Interest made by Panel Members are available.

 

Guidance on assessing the proposals was provided for Reviewers and Panel Members. These guidance documents, along with the agenda for the prioritisation meeting, are available.

 

In December 2011, the MRC announced that five projects with a total value of over £1.6M were funded through the call. Details of these proposals can be found below under ‘MRC-funded research projects’.

 

MRC CFS/ME Expert Group

The group is chaired by Professor Stephen Holgate, chair of the MRC 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.

 

Membership:

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

Declarations of Interest made by group members are available.

 

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

 

The terms of reference of the Group are:

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:

 

MRC CFS/ME Research Workshop 2009

The MRC held a small research workshop for CFS/ME on the 19 and 20 November 2009. The agenda, papers and meeting participants can be found at the links below:

 

Papers circulated prior to the meeting:

 

MRC CFS/ME Prioritisation Meeting

The workshop held in November 2009 identified an extensive list of research areas that were in need of investigation. The MRC subsequently 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.

 

MRC-funded research projects

The MRC has supported the following projects relating to CFS/ME:

Currently funded projects

     

Professor Anne McArdle

University of Liverpool

Determination of mitochondrial function and cytokine production in skeletal muscle of patients with CFS

Professor Julia Newton

Newcastle University

Understanding the pathogenesis of autonomic dysfunction in chronic fatigue syndrome and its relationship with cognitive impairment

Dr Wan Ng

Newcastle University

Identifying the biological fingerprints of fatigue

Professor David Nutt

Imperial College London

Can enhancing SWS improve daytime function in patients with CFS?

Dr Carmine Pariante

King's College London

Persistent Fatigue Induced by Interferon-alpha: A New Immunological Model for Chronic Fatigue Syndrome

Full details of currently funded projects.

 

Recently completed projects

     

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 (ended May 2011)

Professor K Bhui

Queen Mary College, University of London

Chronic Fatigue & Ethnicity (ended November 2008)

Dr C Clark

Queen Mary College, University of London

General and specific risk markers & preventive factors for chronic fatigue and irritable bowel syndromes (ended May 2010)

Professor F H Creed

University of Manchester

The feasibility of a population based study of CFS, IBS and CWP (ended June 2007)

Prof R K Morriss

University of Liverpool

Exploratory RCT of training General Practitioners to mange patients with persistent Medically Unexplained Symptoms (MUS) (ended December 2005)

Dr A Wearden

University of Manchester

Randomised controlled trial of nurse led self-help treatment for primary care patients with chronic fatigue syndrome (ended October 2008)

 

Further information on current research supported by the MRC, which includes CFS/ME can be found on the MRC portfolio.

 

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.

 

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, this will be re-issued shortly, taking into account the recent call for proposals and feedback from the MRC’s Research Boards and the CFS/ME Expert Group.

 

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-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 proposals to the MRC are encouraged to discuss their plans with MRC head office at an early stage.

 

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