To mark the end of International ME Awareness week 2014, we’re announcing a newly funded project – on a subject very close to our hearts.

Around 10 to 25% of ME/CFS patients are housebound or bedbound, yet very little is known about the origin and outcome of their severe illness, and there has been a chronic lack of scientific investigation of the problem. “Ignored and invisible” was the description used in the Chief Medical Officer’s report some years ago, and still today the most severely affected patients remain ignored by and invisible to science.

ME Research UK recently awarded a large Programme Grant to Prof Julia Newton at the University of Newcastle, UK, and her team will shortly begin work on a specific investigation of housebound or bedbound patients, who are normally unable to attend clinics or take part in research projects. The two-year project will be conducted day-to-day by the newly funded ME Research UK Research Associate, and will involve identifying severely affected patients in North-East England, defining their clinical characteristics, gauging the level of unmet clinical need, and determining the relationship between autonomic nervous system dysfunction and other clinical variables. Subsequent progress will depend on what these investigations uncover and where the science leads.

Read more about this project and severe ME/CFS