The UK ME/CFS Biobank for biomedical research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis

Abstract

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.

Assessing diagnostic value of microRNAs from peripheral blood mononuclear cells and extracellular vesicles in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

“…Population demographics. This study evaluated blood samples from a cohort of 30 participants (15 severely affected ME/CFS patients and 15 population age-matched healthy subjects), obtained from the monographic UK ME Biobank 34,35 . ME/CFS diagnosis was assessed with Canadian Consensus 2 and/or CDC-1994 ("Fukuda") criteria 1 , as detailed in methods.…”

“…Diagnosis criteria and standard operating procedures (SOPs) used at this facility have been briefly summarized in the methods section. For further details, readers are referred to publications from the biobank 34,35 .…”

“…All subjects signed an informed consent before samples could be included in the UK ME Biobank 34,35 .…”

Hope, disappointment and perseverance: Reflections of people with Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis participating in biomedical research. A qualitative focus group study

“…ME/CFS participants were subgrouped as mild/moderately and severely affected. The socio‐demographic and symptom progression findings resulted from analyses of a bespoke questionnaire previously piloted by the research group, while disability and quality of life were measured using the SF‐36v2 TM Health Survey . The laboratory‐based findings included: reports on immune responses (particularly on the number and functioning of natural killer (NK) cells), the presence or absence of antibodies against herpes viruses, and the gene expression profiling of the groups.…”

“…We also receive applications from national and international research teams wishing to use biosamples and/or data for studies. Decisions on whether to release samples consider not only the quality of scientific design, but also the potential benefit for PWME . Within this context, we consider the understanding of the meaning and importance of research findings to PWME of paramount importance, and their resultant views on biomedical research priorities.…”