Dr Charles Shepherd, chairman of the biobank steering group, passes on this message from the biobank principal, Dr Luis Nacul:
The UK ME/CFS Biobank would like to share our significant achievements in 2016!
We have completed recruitment of over 500 participants, thanks to the support of charities, private donations and a NIH grant, which have enabled the testing of exciting hypotheses related to immune mechanisms, genetic expression and evidence of viral infection in ME/CFS. We expect to have results of many of our studies published in the first half of 2017.
A Christmas Appeal led by the ME Association raised funds to enable the opening of the Biobank to applications from external researchers in 2016. We have attracted considerable interest from researchers in the UK, other European countries, North and South America willing to benefit from our data and samples from well characterised cases of ME/CFS, all of whom have a medical diagnosis confirmed according to rigorous criteria.
The long-term sustainability of the UK ME/CFS Biobank is a priority for us. We are now preparing to submit an application to the Wellcome Trust on their Biomedical Resources Grant call early in the New Year, which we hope, if successful, will contribute to an increased capacity of the Biobank to support biomedical research in the field.
This is just one of the strategies we will put in place to ensure the resource is sustainable in the long term and will fully meet the expectations of people with ME/CFS and biomedical researchers in the field.
We take the opportunity to thank all people who donated samples and shared their data with us, and all our sponsors and supporters who enabled us to reach this point.
We also want to ensure our commitment to the principles we developed in partnership with people with ME/CFS, including the Biobank focus on ethical and high-impact biomedical research that can translate in benefits, less suffering and ‘stigma' of all of those with ME/CFS.
We wish you all a happy 2017!
READ THE BIOBANK'S DECEMBER PROGRESS REPORT HERE
Wonderful news!!! Was hoping that you guys would do this. We so, so need quality research on all aspects of ME/CFS. Any moves to encourage research into heart rate abnormalities in people with ME/CFS and how heart rate monitoring can be used to minimise PEM, pace/stay inside the energy envelope? Some of the more forward thinking NHS clinics are using heart rate monitors and energy conservation principles to good effect. Research on physiological abnormalities and self management also needed.