I can hardly think of any condition more difficult to cope with than myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. Usually the result of a viral infection, it can manifest in many ways, one of the worst being the loss of the ability to be refreshed by rest.
“I experienced this very briefly once, and it was dreadful. For it to have gone on indefinitely would have been torture.”
Angela Tilby
Over time, many ME patients recover, but others remain disabled — some with fluctuating symptoms, others barely able to function. Doctors find this frustrating, because ME does not fit the medical paradigm whereby a disease is diagnosed from signs and symptoms, and the diagnosis leads to appropriate treatment.
I have heard GPs speak irritably of patients with ME with as though they were time-wasters — and patients, who may well be anxious and depressed, are only too aware when they are not being listened to…
Extracts
Sickness and cure both involve the whole person. Professionals find it hard when patients “fail” to get better. But good care for the chronically ill must allow for those who do not improve, and doctors need to look to their own assumptions if they are to be proficient.
Feeling uncomfortable because a patient does not recover does not mean that the patient is not trying, or has a personality disorder: it means that doctors must be trained to be more self-aware, to be alert for when they might be projecting their own needs on to patients, and so adding to their burden by treating them as if their sickness is their own fault.
“If GET and CBT do not work, they should be dropped, as NICE recommends. It is not the job of patients to protect doctors’ egos.”