Background. This disease-specific biobank was conceptualised and is administered by researchers (the CureME team) at the London School of Hygiene & Tropical Medicine (LSHTM); while the University College London-Royal Free Hospital (UCL-RFH Biobank), a partnering licensed infrastructure for biobanking, is responsible for processing, aliquoting and storing samples. Release of samples is coordinated between both teams. The Biobank was concomitantly developed with a research proposal on immunological, virological and gene expression aspects of ME/CFS, which was later funded by the National Institutes of Health (NIH/NIAID ). The latter allowed the expansion of the initial cohort in 2017, which now includes 284 participants with ME/CFS, 60 with multiple sclerosis and 135 healthy. A subset was followed-up at 6–12 months.
Figure1. summarises the Biobank recruitment procedures. Figure 2, details sample processing procedures and blood derivative outputs.
Objective: To record a process of collecting samples from a participant at a surgery local to the LSHTM, in this case blood, for storage at a Biobank at the Royal Free Hospital and then onto LSHTM for research. With the images the ME Association want to provide images for a two-page editorial in the M.E Association magazine, Autumn edition and a Gallery of images for the LSHTM.
My third and final shoot was held over two days at the London School of Hygiene & Tropical Medicine, a participating General Practice Surgery and the Royal Free Hospital where the Biobank was situated. Due to the participant having to travel from Sheffield and could only arrive on the second day, I photographed the research first taking place at the Laboratories at LSHTM. The second day comprised of meeting the participant, a series of tests and procedures such as taking blood, weight and strength testing before going onto the freezing of the blood samples at the Royal Free Hospital as follows;
Day 1, 3rd April 2019. I meet Sook, who was the clinical research fellow conducting the research into mainly immunology, virology and gene expression, and she led me through the steps of the testing procedures, from stabilisation and preservation through to long-term preservation.
Day 2, 4th April 2019. Here I was taken to the GP Surgery with Caroline Kingdon, Research Fellow, Research Nurse and UK ME/CFS Biobank Lead. Here I met the participant who had travelled all the way from Sheffield just to have her bloods taken and to make sure she contributed to the research. She was a young girl studying at Sheffield University when she was able to. The Participant, was a little shy of the camera, but we soon settled into taking photographs. I didn’t use the tripod with film camera on this occasion as I suspected it was just a little too much for her.
Following photographing the participant we took the blood samples to the royal Free Hospital and to the BioBank. I was not allowed too much time here and so found it difficult to take as many photographs as I would have liked. Keeping the freezing storage containers open of course, for any length of time, just wasn’t practical. Overall I had just enough to tell the story from participant to biobank to research as per the collaboration with the LSHTM and the ME Association.
In summary, the days were informative, from the previous two shoots I was learning about managing the time efficiently, being pushy enough to get what I needed and start to reduce the number of images to actual shots I had in mind. Making better use of my time and theirs. The images fro the collaboration I decided to supply different images in black and white and colour. It was a personal decision and LSHTM seemed happy with receipt of the images, a little later in June. They are planning to use this for a gallery of images that will be displayed on the website, showing the process as I had been instructed.
CureMe website. 2019. [online] Available at https://cureme.lshtm.ac.uk/
LACERDA E, BOWMAN E. and others. 2017. The UK ME/CFS Biobank for biomedical research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis. Open Journal of Bioresources. February(4)1 [online] Available at http://doi.org/10.5334/ojb.28 [accessed 1st Apr. 2019.]
LSHTM. 2019. Supporting the ME/CFS Biobankhttps://www.lshtm.ac.uk/supportus/gift-in-action/supporting-mecfs-biobank