FMP - Prioritising M.E/CFS Research for a photoshoot.

After searching for some time for UK funded research, I made an appointment to speak to Dr. Charles Shepherd, Head of M.E Association. He kindly agreed to talk me through the research, 21 Jan 2019, for M.E/CFS associated with the M.E Association and help me to prioritise where I might look for photography projects. Projects that would be interesting scientifically, have areas of ambiguity and have good possible visual imagery for a photographic shoot. . 

Dr. Charles Shepherd. Head of M.E Association.

M.E/CFS Research.  My first list.

Here are some examples of the ongoing scientific research work in M.E/CFS:-

  • Tracking peripheral immune cell infiltration of the brain. USA.
  • Comparing M.E/CFS and IB : in gut immune and micro-bionic changes. Newcastle. UK.
  • Investigating abnormalities in AMPK activation (this is an activated protein kinase normally activated during muscle contraction). Newcastle. UK.
  • The role of auto-antibodies in M.E/CF. Berlin.
  • Two dimensional sequencing and machine learning to maximise genetic marker detection.
  • Australia.
  • Host gene expression during post-exertional symptom flare in M.E./CFS. Canada.
  • Neurological Biomarkers in paediatric M.E/CFS. Australia. 
  • Epigenetics of the BDNF gene and its relevance for pain. Brussels. 
  • Combatting oxidative stress. Dundee. UK. 

We discussed M.E and how the research work could be divided:-

1.) Those that are pre-disposed to M.E/CFS, those that suffer an earlier infection or viral trigger. 

2.) The Progress of M.E/CFS

3.) That which perpetuates from M.E/CFS

Next we discussed access to which centres might be the easiest and which might be conducting research that is visually interesting either from a documentary perspective, but more interesting to me the scientific research. 

After working through a series of research work, I decided to follow up on three research programmes, two of which where from my discussions with Dr. Shepherd and one through the IINVME14 research programme. 

1. The Biobank, blood and tissue bank at the London School of Hygiene and Tropical Medicine (LSHTM). After a couple of conversations we agreed a collaboration. They were interested in photographs of the process of collecting samples for the biobank, from patient to storage to research. The dates for this are to be confirmed, since the patient they have in mind has medium to severe M.E and will either have to be photographed at home or they will arrange for the patient to be transported to the LSHTM. Also images for editorial and possibly the development of a video. 

2. The Neuro-imaging work on post exertion malaise at Brighton and Sussex Medical School, based at the Clinical Imaging Sciences Clinic (CISC). This work is run by Professor Neil Harrison and is co-funded with work from St.Georges Hospital, London. No collaboration was agreed here, but they permitted me into the CISC to take photographs of the trial. The trial was soon to end and so I was given a date really quickly for the 14th February. 

3. The Quadram Centre, contact came through the International Invest in M.E research work (IINVME14). In 2017 I attended this conference as a sufferer of M.E and met with several clinicians, patients, carers and attended the lectures. One of the lectures which was given by the Quadram Centre, pre set up. The research here is focused around gut health and how that malfunctions in M.E/CFS patients causing a range of symptoms. I contacted the organisers of this conference and they kindly distributed and email for me, outlining the project, to all researchers connected with the conference. The Quadram Centre requested to talk to me and we agreed a collaboration. They were keen to promote their PhD students and their work in line for the IINVME14 conference coming up at the end of May 2019. Also images for editorials and press releases. 

So it seems I have my first three shoots agreed, two of which are interesting interdisciplinary collaborations. Now to set up the pre-shoot meetings so that we are all clear about what we are doing on the day. 

ME Association Website. 2019. Research. [online] Available at and [accessed 15th Jan. 2019]

ME Association Website. 2019. UK ME/CFS Biobank [online] Available at [accessed 15th Jan 2019]

Quadram institute of BioScience. 2019. Targets, ME/CFS. Website. [online] Available at [accessed 10th Jan 2019]

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