The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd at the Wellcome Collection in central London. The aim of the CMRC – the first of its kind in the world – is to promote the highest quality of basic and applied evidenced-based and peer reviewed research into ME/CFS by bringing together national agencies, ME/CFS charities, and working researchers from across the UK who wish to work towards that common goal. The importance of the event was underscored by the attendance of the Duke of Kent, patron of the ME Association, and the Countess of Mar, one of the Patrons of ME Research UK.
The first speaker was Annette Brooke MP, Chair of the All Party Parliamentary Group on ME, who spoke about the importance of research for patients with ME/CFS. As she explained, given that there are around 200,000 patients across the UK with ME/CFS, every MP will know one who is experiencing difficulties in having their condition recognised and accessing services. The All Party Parliamentary Group on ME works on a cross party basis, and as a group its members are committed to helping to get more research up and running. As she said, “
Our constituents are angry and frustrated – many want more than standard care and coping strategies, as useful as these can be; they want the causes to be understood, and they hope to be cured.” Annette and her colleagues also work hard on the benefits aspects of ME/CFS, and they know full well that the stresses and strains of the benefits system add to the illness and impact upon whole families. Since the launch, she has placed an Early Day Motion (no. 1298) in Parliament welcoming the launch of the Collaborative.
Annette was followed by two speakers from national research funding agencies. Dr Joe McNamara of Medical Research Council Head Office, London described MRC initiatives in CFS/ME established in recent years, which culminated in the award of £1.65 million in 2011/12 for five discrete grants to Dr Wan Ng (Newcastle University), Prof. Julia Newton (Newcastle University), Prof. Anne McArdle (University of Liverpool), Prof. David Nutt (Imperial College London) and Dr Carmine Pariante (King’s College, London). Presentations of the work of most of these groups took place in the afternoon session. Dr McNamara’s talk was followed by a presentation from Dr James Fenton of the NIHR Trainees Coordinating Centre, who described the training awards that were available to researchers whose work focused on people and patient-based applied health research, with the aim of developing “research capacity” in specific areas.
On behalf of all five research-supportive charities (Action for ME, the Association of Young People with ME, the CFS Research Foundation, the ME Association, and ME Research UK), Sue Waddle, Vice-Chairman and Trustee of ME Research UK gave a talk on the role of medical charities in ME/CFS research. In the presentation, Sue pointed out that around 200,000 people in the UK alone have ME/CFS, far more than the number of people with multiple sclerosis, which receives far more media and research attention. Children and young people are not immune, and the illness is the most important single cause of long term absence from school in Britain. Illness in youngsters is particularly poignant. As she said, “
The transformation of a bright, active child into one who is unable to go to school or play with friends is something that touches us all – and the same can be said for adults who are severely affected and have limited socialisation. These facts starkly illustrate the extent of the human problem, and highlight the need for programmes of research to be undertaken with some urgency… The aims of this Research Collaborative are to help patients by bringing a coherent professional approach to the investigation of their illness, and developing therapies to help them back to health.”
The presentation focused particularly on the vital part charities play in directly supporting and funding research in adults and children. Worldwide, a significant proportion of research funding for many, if not ALL, illnesses comes from charitable sources. A recent report estimated that in 2011/12 in the UK alone, charity-funded research amounted to £1.14 billion. As Sue pointed out, “
It can be safely said that if the charity sector did not exist, scientific research into all medical conditions would be much the poorer, and discoveries would be far less frequent.” In ME/CFS, there have been inspiring examples of collaboration between the research charities in recent years. For instance, both the ME/CFS Biobank project and the ME/CFS Disease Register have been funded through a consortium containing the ME Association, Action for ME and ME Research UK, and ME Research UK itself has funded projects with a range of partners (as the reports here show).
And Sue concluded by saying, “
It augers well for the future that all stakeholders, be they charities, scientists, funding bodies, government or industry, recognise that a collaborative approach to funding research offers the greatest chance of success. Every representative here today has a role to play in this collaborative. Each of our charities, for example, has its own history and has faced its own challenges, but we all recognise one simple thing: that the only way we can achieve the level of change that we need is by working together to tackle this awful disease.”
Prof. Stephen Holgate, CMRC chair and MRC Professor of Immunopharmacology, University of Southampton, gave a lively talk on why a UK Collaborative for CFS/ME was needed. Prof. Holgate has had previous experience of organising a successful research collaborative in respiratory illnesses, and some years ago had chaired the ‘MRC CFS/ME Expert Group’ to consider how new high-quality research into CFS/ME might be encouraged, a move which led to the recent MRC grant awards. He described the background to his own interest in ME/CFS, the burden on patients that the disease represents, and why he thinks the time is ripe for a collaborative approach to overcoming the many issues surrounding the illness. The first session was closed by Dr Esther Crawley, Deputy Chair CMRC, of the University of Bristol who described the UKCMRC charter.
During the lunch break, researchers’ posters could be perused and discussed. It was a particular pleasure for ME Research UK to have some of the researchers it has funded in attendance and presenting posters, and they included Dr Claire Hutchinson (University of Leicester), Dr Clive Carter (Leeds NHS Trust), Dr Eliana Lacerda and Dr Erinna Bowman (London School of Tropical Medicine and Hygiene), Dr Faisel Khan and Dr Gwen Kennedy (University of Dundee), Prof. Julia Newton and colleagues (Newcastle University), and Prof. Derek Pheby (Buckinghamshire New University).
The afternoon session was devoted to research aspects of ME/CFS. Three younger researchers outlined their research projects: Simon Collin, University of Bristol, described the CFS/ME National Outcomes database, and the use of the information it contains; Zoe Gotts, University of Northumbria, described her work on the role of sleep in patients, including sleep profiles; and Dr Katharine Rimes, King’s College London, described changes in salivary cortisol before and after treatment.
However, the main focus of the session was on the work of the groups which had received grant awards from the MRC recently. For example, Dr Wan Ng (Newcastle University), using primary Sjogren’s syndrome (an autoimmune condition with several clinical features similar to ME/CFS) as a disease model, is undertaking a comprehensive analysis of the immune system to identify biological fingerprints, and explore whether these biomarkers are present in ME/CFS patients. Prof. Julia Newton (Newcastle University) is using her award to further understanding of the pathogenesis of autonomic dysfunction and its relationship with ME/CFS, using functional magnetic resonance imaging to measure changes in blood flow to the brain. Dr Carmine Pariante is pursuing his work on an immunological model of fatigue, following patients undergoing interferon-alpha treatment for hepatitis C to identify biological measures useful for the prediction of the development of ME/CFS. Prof. Anne McArdle (University of Liverpool), represented by Dr Nicola Wells, is using newly developed, sensitive laboratory techniques to study mitochondria within muscle cells, with the aim of identifying interventions to reverse or halt further damage.
The day ended with a question and answer session with a panel of speakers, and a round-up by Prof. Stephen Holgate and Dr Esther Crawley. As Prof. Holgate pointed out in the accompanying press release, “
For the first time the research community and funders in the UK have joined forces in this unique new collaboration to create a step change in the amount and quality of research into chronic fatigue and ME. By coming together in this way, the application of state-of-the-art research methodology to this complex group of conditions will greatly increase the chance of identifying pathways linked to disease causation and novel therapeutic targets. The key to success will be the engagement of scientists outside the field.
Statement by Jan McKendrick on behalf of the Trustees of ME Research UK
ME Research UK is pleased to be one of the founding charity members of the ME/CFS Research Collaborative launched on April 22nd. The simple aim of any research collaborative is to raise the profile of research in a particular field, and ME/CFS needs this more than any other disease. Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.
Membership of the Collaborative increases the opportunities we have to engage directly with researchers working in ME/CFS, and with other charities working towards similar ends. Importantly, it lets us draw attention to the need for high quality scientific investigation, and to be a standard bearer for biomedical research to unravel the causes of the disease. Now that the launch has occurred and the process is underway, our short-to-medium term focus can be on pursuing some of the objectives of the Collaborative Charter, such as increasing collaboration between research groups, attracting ‘new blood’ research professionals into the field, and presenting a united front when engaging major funding bodies like the Medical Research Council which hold the bulk of the funding resources.
Of course, ME Research UK will continue to fulfil its core function – the commissioning and funding of scientific research projects across the world. To date, we have funded 35 distinct biomedical studies totalling almost £1 million and resulting in over 50 research papers, and these studies have helped to further the understanding of the disease. Our success to date has been built on providing ‘seed corn’ funding to support researchers at early stages of their investigations, so they can acquire the pilot data needed for grant applications to major national funding agencies. Examples of our significant successes include the work at Newcastle University, which led to a large award from the MRC; the long-term programme at the University of Dundee which has uncovered a range of biochemical anomalies; and the wide-ranging ongoing programme at Vrije Universiteit Brussels. In each case, initial funding by ME Research UK has led to findings which have attracted funding from other sources. Imagine what could be achieved with greater resources and a more vibrant research base.
The Trustees of ME Research UK wish the ME/CFS Research Collaborative well in its quest to raise the profile of research across the board. It is because we are all people directly affected by ME/CFS – either as patients, family members or friends – that we welcome this attempt to dramatically alter the research landscape to the benefit of ME/CFS patients everywhere.
The launch had been preceded by a press conference for science journalists, and this generated some positive press coverage – concentrating mainly on the biomedical work of the scientists recently awarded £1.65 million of funding for ME/CFS research by the MRC.
The publications covering the science and the event included:
- The Times (London)
- The Journal (North-East England)
- Bristol University
- Newcastle University
- British Medical Journal
- New Scientist (30th April) had a very short item: “
Hunting fatigue: There’s no place to hide for the elusive agent causing chronic fatigue syndrome. The world’s largest effort to unmask the cause of the disease was launched this week in the UK. The CFS/ME Research Collaborative will follow several lines of enquiry, including individual differences in cell metabolism.”