Around 10 to 25% of ME/CFS patients are reported to be housebound or bedbound, yet we still understand very little about the origin and outcome of their severe illness. We know, however, that severe illness predisposes patients to secondary medical conditions, and that the cumulative impact of severe illness over many years, where there is no sense of improvement, can be profound. Because of all this, 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 (discussed more fully in our essay, Severely Overlooked by Science
For many years, ME Research UK and Prof. Julia Newton and colleagues at Newcastle University have been concerned about the chronic lack of research interest into severe ME/CFS, and the serious void that exists in the scientific knowledge-base about this group of patients. So, as part of a Programme Grant ME Research UK awarded to the researchers in 2014, it was decided to initiate a specific project investigating housebound or bedbound individuals who are unable to attend clinics or take part in research projects (which often require hospital attendance and multiple visits).
This aim of this exploratory study is to raise the curtain on this severely overlooked group of patients, defining their clinical characteristics, gauging the level of unmet clinical need, and determining the relationship, if any, between autonomic nervous system dysfunction and other clinical variables. Subsequent progress will depend on what these investigations uncover and where the science leads. The two-year project will be conducted day-to-day by the newly funded ME Research UK Research Associate, and further details are here.
ME Research UK
North Methven St
Perth PH1 5PP, UK
ME Research UK is a Scottish Charitable Incorporated Organisation (charity number SC036942) funding biomedical research into ME/CFS and related illnesses. Our principal aim is to commission and fund high-quality scientific (biomedical) investigation into the causes, consequences and treatment of ME/CFS, but we also have a mission to “Energise ME Research“