The Sussex & Kent ME/CFS Society hosted a most successful research and management conference at Brighton Marina’s Malmaison Hotel on Friday October 29th.
The organisation has been holding popular large conferences around every four years since it’s inception in the late eighties. The most memorable is probably the one held in 1992 when novelist and former yachtswoman, Clare Francis joined us at Hove Town Hall when 450 people turned up on a Sunday afternoon worrying the two security officers on duty. This was probably the largest number of people affected by ME/CFS ever assembled at a time when there was little acknowledgement or information about the illness.
At the 2021 meeting we had approaching 80 people attending including doctors, PhD students and NHS clinicians from several specialist CFS/ME services and support group reps from across the South East. Two lead clinicians from Long-Covid services were in the room. Also in attendance was Prof Colin Smith and BACME chair, Anna Gregorowski from London along with Dr Mario Vergara-Williamson. Simon Burgess, former Brighton & Hove Council leader opened the event speaking passionately of his experience with fibromyalgia.
The main presentations were given by Dr Jessica Eccles, Dr Charlie Thompson and Marisa Amato from Brighton & Sussex Medical School and Sussex Partnership NHS Foundation Trust who have been conducting studies into ME/CFS and Fibromyalgia directed by Dr Eccles, Prof Kevin Davies and Prof Neil Harrison. Subjects covered in detail included gene expression differences and interoception findings as well as difference in inflammatory markers.
Chairing the afternoon was specialist ME/CFS physician Dr Alan Stewart whose talk included Covid-19 and ME/CFS and what importantly has been learned since the society’s 2016 conference and the NICE guidelines. Alan was joined by his colleague senior OT James Shute of the NHS Sussex-wide CFS/ME service who gave a good update on service provision in the region. There was a long and lively questions and discussion session towards the end of the afternoon.
A most friendly and positive afternoon that was a very good example of the scientific and medical communities working collaboratively with the voluntary sector.