A big scoping exercise in under way in the North of England to find people with severe M.E. willing to take part in research into the clinical nature of their illness – particularly with regard to its relationship with cognitive impairment and autonomic dysfunction.
In the first phase of a two-year study, researchers at Newcastle University led by Professor Julia Newton are building up a register of severely ill people – bedbound, housebound, wheelchair-bound – in the Northern Clinical Network area.
Participants need to be over the age of 18, have self-reported ME/CFS and be living in the North East, North Cumbria or the Hambleton and Richmondshire districts of North Yorkshire.
The study – which will be split into two phases – is being funded by ME Research UK (MERUK) who say that so far “it is astonishing that the most basic clinical and experimental scientific work has not been carried out on this important subgroup of people with ME/CFS.”
In the second phase, five severely affected people on the register will be invited to take part in home visits for intensive study. They will be visited five times over a 12-week period as researchers assemble detailed clinical pictures about them.
If you are interested in taking part, please contact Victoria Strassheim at firstname.lastname@example.org to write to ME Research UK Severe ME/CFS, BRC Office, Old Victoria Wing, Old Ward 1, RVI, Queen Victoria Road, Newcastle, NEI 4LP.