Samples from our Biobank are now available to external researchers around the globe. This is a recent and very exciting process. Making our samples available to other researchers and their projects and studies increase the chances of achieving desperately-needed breakthroughs into the cause and treatment of ME/CFS, in the most cost-effective manner:
Here are our current collaborating researchers and their stories:
Dr Elisa Oltra is a Professor of Cell and Molecular Biology at the Catholic University of Valencia in Spain where she also works as a researcher in the area of stem-cells and cancer. She received samples from the Biobank in June 2017, to conduct a study into the microRNA profiles of people with ME.
“Any researcher would agree that quality of samples is key to molecular-based research. In heterogeneous diseases, as it is the case of ME/CFS, this necessity is still more remarkable as real disease-associated signals would be diluted out and become undetectable. My research group at the Catholic University of Valencia (Spain), being aware of the importance of sample quality control and standardization procedures, has chosen to work analyzing ME/CFS blood samples from the UK ME Biobank for the study of microRNA profiles which we believe should lead to the identification of affected cellular pathways of ME/CFS disease.”
Encouraged by the idea that miR profiling may be altered in ME/CFS, her group have been looking at blood samples, and other body fluids, to see if there are any significant abnormalities. In their initial study, they have looked at miRs in peripheral blood mononuclear cells (PBMCs) in patients with both ME/CFS and age-matched controls and those with FM.
They are now extending this study to include a larger group of participants with a more varied symptom profile with the aim of symptom profiling and producing symptom severity miR profiles. This is being done in collaboration with Dr Nathanson (who works with Dr Nancy Klimas in the USA) and Dr Alegre’s group in Barcelona, Spain.
Dr Camila Malto Romano is a microbiologist at the Instituto de Medicina Tropical de São Paulo at Universidade de São Paulo, where she researches viral evolution and virus-host interaction. In September 2017 she received samples from the UKMEB to begin a study into ME/CFS.
“Despite ME/CFS being described six decades ago, the disease remains poorly understood by health professionals and is also unfamiliar to the public in general. The situation is even more complicated in low- and middle-income countries, where the medical community most of the time do not recognize ME as a disease. The prevalence of ME in Brazil is estimated to be around 1.6%, but given the difficulties in recognising the syndrome, it is likely that several cases may be misdiagnosed. For this reason, to establish a cohort to study the disease in Brazil is very difficult.
My group has been working with endogenous retrovirus (ERV) activity in healthy and neurological disorders, looking for distinct expression profiles of the ERVs that would be linked to the development of diseases of unknown or supposedly multiple aetiologies. In our most recent project, ‘Investigation of human endogenous retrovirus expression in individuals with myalgic encephalomyelitis’, we intend to identify differences in expression profiles of the endogenous retroviruses between healthy and ME/CFS patients. Although ERVs have been very well explored on several conditions, there is a lack of studies dedicated to their role on ME/CFS.
However, an accurate diagnosis of ME/CFS requires strict clinical case definitions and sadly, as mentioned above, to achieve a well-established ME cohort in Brazil is not an easy task, so that studies on this area are seriously impaired. For this reason, our group is so grateful to have received samples from the UK ME/CFS Biobank. A total of 170 samples were shipped to our laboratory in São Paulo, Brazil in September. We sincerely hope to contribute with data to increase the understanding of the ME/CFS pathogenesis. This collaboration will indeed enable us to move forward our studies on the involvement of endogenous retroviruses on ME/CFS”
Dr Jackie Cliff is an Assistant Professor in Immunology, and our Laboratory Research Lead at The London School of Hygiene & Tropical Medicine. Her expertise in immunology and genetic expression has been a great asset to the team and has yielded some promising results, for publication in 2018. In December 2017 we recruited 60 more participants for her subsidiary grant (also funded by the NIH), which will enable comprehensive assessments of cases of ME/CFS, using saliva and urine samples, at regular monthly intervals. This greatly enhances the chances of a breakthrough in the understanding of the pathophysiology of the disease.
Jackie has collaborated with us on our main NIH-funded grant, and also works on a connected subsidiary grant using UKMEB samples.
Dr Karl Morten is a senior researcher and laboratory manager at the Nuffield Department of Obstetrics and Gynaecology, John Radcliffe Hospital, Oxford University.
In November 2017 we released a batch of samples to Dr Morten. This sample release represents the culmination of a year’s fundraising and planning, initiated by the ME Association in their 2016 Christmas Appeal.
Dr Morten’s research will use mass spectrometry techniques (among others) to investigate metabolites, chemical clues that have been left behind after metabolism in the cells of people with ME.