‘New hope for ME/CFS research in the UK’ – joint charities’ biobank statement

Three charities – Action for M.E., the ME Association and ME Research UK – and a private donor have joined forces to fund the UK’s first biobank of human blood samples for research into the causes of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./CFS).

The biobank will be situated at London’s Royal Free Hospital where it will be able to link in with the extensive research facilities at University College London.

From Monday 8 August, having completed their feasibility studies, principal researchers Dr Eliana Lacerda and Dr Luis Nacul, London School of Hygiene and Tropical Medicine, will be inviting patients from a dedicated disease register to submit blood specimens. The blood will then be specially prepared and stored for use in future biomedical studies.

Initially, blood samples will be collected from a group of patients currently enrolled in the M.E./CFS Disease Register, and from healthy controls. This patient group will include people who are severely affected and bedbound.

In the longer term other people who have been diagnosed with M.E. will be able to donate blood samples too.

The work will be overseen by a steering group made up of made up of medical and academic experts, charity representatives and others.

Sir Peter Spencer, Chief Executive, Action for M.E., says:

“This biobank will be an invaluable resource for scientific research into the different sub types of the condition and for seeking biomarkers that could play an essential part in diagnosis – at the moment there is no definitive test for M.E./CFS. I believe the biobank will quickly prove its immense value to researchers and become an indispensable part of the nation’s research effort into the illness.”

Dr Charles Shepherd, Chief Medical Adviser, ME Association, says:

“We know that people with M.E./CFS have been frustrated by the lack of biomedical research in the UK. They are very supportive of research involving tissue sample collections, particularly blood samples, which they believe will lead to a better understanding of the cause of the disease and hopefully the development of specific treatments.”

Dr Neil Abbot, Operations Director, ME Research UK, says:

“Biobanks have great potential, as the 2009 House of Lords Report on Genomic Medicine made clear in 2009. The creation of a biobank infrastructure for M.E./CFS, linking bio-specimens with clinical, disease and other data over the long term, is a very welcome advance. We need to know far more about the causes and consequences of this illness which has been overlooked for too long.”

Co-principal investigator Dr Luis Nacul, London School of Hygiene and Tropical Medicine, says:

“This proposal seeks to create the infrastructure that will enable the investigation of a range of biomedical research questions eg. those related to the aetiology, pathophysiology, diagnosis and stratification of cases. We will achieve this by providing the research community with a well-characterised cohort of people with M.E./CFS with biological samples and clinical data attached.”

The need for more high-quality biomedical research in M.E./CFS has been recognised by the Medical Research Council (MRC), which announced in January that it was committing £1.5 million for research into the mechanisms of the illness.5

The charities hope that studies funded by the MRC will make use of the biobank, after they are announced later this year.

Professor Stephen Holgate, Chair, MRC Population and Systems Medicine Board, says:

“This initiative has my full support. The biobank project is an excellent example of how the M.E./CFS charities are working together within the national framework, established by the Medical Research Council expert group, for taking forward the UK’s research effort into this poorly understood chronic condition.”




Information about the Disease Register, part of the National M.E./CFS Observatory, may be found on Action for M.E.’s website at: www.actionforme.org.uk/get-informed/research/our-research-related-activity/national-me-cfs-observatory/index

Information about the MRC’s M.E./CFS funding initiative may be found at: www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm</a>


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