Every cloud has a silver lining and staff at Britain's only ME/CFS biobank have found theirs in the peer-reviewed Open Journal of Bioresources.
They've used the pages of the four-year-old online journal to lay out their protocols and operating procedures so they can be seen immediately by serious researchers anywhere in the world.
Interested researchers don't actually need to physically visit either the beating heart of the UK ME/CFS Biobank in the London School for Hygiene and Tropical Medicine or its state-of-the-art storage facility inside the larger Royal Free Hospital/University College London biobank.
The UK ME/CFS Biobank is wholly funded by The ME Association's Ramsay Research Fund and its steering group is chaired by Dr Charles Shepherd, medical adviser to the ME Association.
The abstract in the Open Journal of Bioresources appears below as does other useful information.
FROM THE OPEN JOURNAL OF BIORESOURCES, 20 FEBRUARY 2017.
The UK ME/CFS Biobank for biomedical research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis
Eliana M Lacerda(1), Erinna W Bowman(1), Jacqueline M Cliff(2), Caroline C Kingdon(1), Elizabeth C King(2), Ji-Sook Lee(2), Taane G Clark(3), Hazel M Dockrell(2), Eleanor M Riley(2), Hayley Curran(1), Luis Nacul(1)
1) CureME Research Team, International Centre for Evidence in Disability (ICED), Department of Clinical Research (CRD), London School of Hygiene and Tropical Medicine, GB
2) Department of Immunology & Infection, London School of Hygiene and Tropical Medicine, GB
3) Department of Pathogen Molecular Biology, London School of Hygiene and Tropical Medicine, GB
The UK ME/CFS Biobank was launched in August 2011 following extensive consultation with professionals and patient representatives. The bioresource aims to enhance research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), related to pathophysiology, biomarkers and therapeutic approaches.
The cohort includes 18–60 year olds, encompassing 284 clinically-confirmed ME/CFS cases, 60 neurologist-diagnosed multiple sclerosis (MS) cases, and 135 healthy individuals.
The Biobank contains blood samples, aliquoted into serum, plasma, peripheral blood mononuclear cells (PBMC), red blood cells/granulocyte pellet, whole blood, and RNA (totalling 29,863 aliquots).
Extensive dataset (700 clinical and socio-demographic variables/participant) enables comprehensive phenotyping. Potential reuse is conditional to ethical approval.
MORE INFORMATION ON THE UK ME/CFS BIOBANK
THE BIOBANK'S UPBEAT END OF 2016 REPORT