Severely ill ME/CFS patients are by definition largely, if not totally housebound, except for their attempts to access medical care. They are generally unable to cope with social visitors, and may become somewhat forgotten about, easily misunderstood and even maligned, not only by the medical profession, the media and society more generally, but even by family and friends. None-the-less patients often show remarkable determination and courage in attempting to play a larger role in society and in trying to regain their lost health and independence.

Very severe ME/CFS can be a very frightening disease, not only for the family and carers of the severely ill patient, but also for doctors who are unlikely to have any previous experience of these most severe presentations. Patients can die from very severe ME/CFS and it’s complications, and this is more likely to happen when their condition is badly managed by ill-informed doctors. It is important that doctors listen to the patient, or if the patient wishes, to their carers. Specialist help should be available for these very severe cases.

“While it may be understood from a written page that the severe and very severe ME/CFS patient should receive advanced medical care outside of the hospital setting, this video brings the depth of understanding and acceptance of this concept to the viewer’s core. A must see for physicians accepting the responsibility for these patients and a must see for carers confronting the decision as to whether the patient in their care needs to go to hospital and, if so, how best to manage it.”
KENNETH J. FRIEDMAN, PH.D.
Guest Editor: Advances In ME/CFS Research and Clinical Care. Guest Editor: ME/CFS – The Severely and Very Severely Affected