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http://www.meassociation.org.uk/?p=3D7540
=91New hope for ME/CFS research in the UK=92 =96 joint charities=92 biobank=
statement
by Tony Britton on August 10, 2011
Three charities =96 Action for M.E. (1), the ME Association (2) and ME
Research UK (3) =96 and a private donor have joined forces to fund the
UK=92s 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=92s 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:
=93This 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 =96 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=92s research effort into the illness.=94
Dr Charles Shepherd, Chief Medical Adviser, ME Association, says:
=93We 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.=94
Dr Neil Abbot, Operations Director, ME Research UK, says:
=93Biobanks 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.=94
Co-principal investigator Dr Luis Nacul, London School of Hygiene and
Tropical Medicine, says:
=93This 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.=94
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 =A31.5 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:
=93This 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=92s research effort into
this poorly understood chronic condition.=94
ENDS
NOTES TO EDITORS
For more information, including about the illness, its symptoms and
prevalence, or to arrange an interview, please contact
Action for M.E. Press Officer Clare Ogden on
clare.ogden@actionforme.org.uk or 0117 930 1324
ME Association Publicity Manager Tony Britton on
tony_mea@btinternet.com or 01406 370293 or 07780 502927
ME Research UK Operations Director Dr Neil Abbot on meruk@pkavs.org.uk
or 01738 451234
THE CHARITIES
1. Action for M.E. (www.actionforme.org.uk) is the UK=92s largest
charity working to improve the lives of people with M.E./CFS. It
provides information and support to people affected by M.E./CFS and
their carers and campaigns for more research, better treatments and
better services for them.
2. The ME Association (www.meassociation.org.uk) is a charity that
provides information, support and practical advice for people who are
affected by M.E./CFS/PVFS (Myalgic Encephalopathy/Chronic Fatigue
Syndrome/Post Viral Fatigue Syndrome), their families and carers. It
also funds and support research, and offers education and training.
3. ME Research UK (www.meresearch.org.uk) is a charity which
commissions and funds scientific (biomedical) investigation into the
causes, consequences and treatment of M.E./CFS. In the past decade it
has funded 31 scientific research projects in the UK and overseas.
DISEASE REGISTER AND MRC
Information about the Disease Register, part of the National M.E./CFS
Observatory, may be found on Action for M.E.=92s website at:
www.actionforme.org.uk/get-informed/research/our-research-related-activity/=
national-me-cfs-observatory/index
Information about the MRC=92s M.E./CFS funding initiative may be found
at: www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm
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