CureME newsletter December 2016:
UK ME/CFS Biobank are delighted to announce that we have reached our participant recruitment goals and have now banked close to 30,000 aliquots (blood samples) in the Biobank.
Our samples represent people with mild/moderate ME/CFS, severe ME/CFS, multiple sclerosis and non ME/CFS chronic fatigue as well as healthy participants – providing a unique cohort in the field of ME/CFS research. As you may already know our research and recruitment to the biobank has involved a longitudinal study so we have also collected samples from many participants at two points in time (baseline and another point 6-12 months later).
Some of the Biobank samples have already been accessed and are being used by teams of researchers here at the LSHTM (London School of Hygiene & Tropical Medicine) as part of the work planned for the original NIH grant. We were excited to hear that Professor Eleanor Riley has been awarded $132,224 to further her team’s work exploring the associations between human herpes virus infection and ME/CFS.
On International ME Awareness Day (13th May 2016), the opening of the UK ME/CFS Biobank to researchers both nationally and internationally was announced with a launch held at LSHTM. We were humbled by the number of researchers, participants, stakeholders and participant advocates who made the effort to attend this landmark event, and we would like to thank those who were unable to attend but cheered us on from afar.
Since opening we have had significant interest in the Biobank from researchers across Europe and the United States with a number of applications expected in the New Year. As you can imagine, the research application process is a long-winded affair as ethical approval and funds need to be secured; thankfully we have built strong relationships with those interested in our samples and are offering our support in this process. This is an exciting time for biomedical research in ME/CFS and we are pleased to be able to offer premium quality samples to enable cost-effective research in an area where funds have been limited.
We know how precious and valuable each of these tiny tubes is, and the process for their distribution ensures that research proposals are robust and ethical and will help better understanding of the mechanisms of and possible treatments for ME/CFS. We wish to reassure our participants that any intention to use our samples by any research group will have to comply with the Biobank’s mission. We will prioritise research proposals that intend to test or generate new hypotheses on the pathophysiology of ME/CFS, improve diagnosis (biomarkers) and phenotyping, and/or basic science. Stringent application and review procedures will continue to be monitored by our Steering Committee.
Spring meetings planned
In the spirit of continuing to work alongside our participants to seek the best way of doing things, we hope to meet with some project participants with ME/CFS to discuss the results and how these can be most effectively disseminated. We hope to hold participatory meetings in London and Norwich, and news of such will be available on the Biobank website and social media outlets soon.
Stay Connected with CureME
During 2016 we launched our new website (cureme.lshtm.ac.uk) and social media accounts on Twitter and Facebook (@mecfsbiobank). If you are interested in finding out more about our research and the Biobank, please follow us or have a look at our webpage (where you can also sign up to our newsletter distribution list if you aren’t already on there).
