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.
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.
Recommended medical interventions have included graded exercise therapy (GET) and cognitive behavioural therapy (CBT). But a significant number of patients find that exercise worsens their condition, sometimes severely. Others, understandably, resent not being taken seriously. The National Institute for Health and Care Excellence (NICE) has produced a report based on medical expertise and on the experience of patients, which recommends dropping these two therapies; but publication was stalled last week after protests by two of the royal colleges of medicine. They claimed, rather lamely, that GET and CBT were the only treatments on offer, and should not be discarded. Patients’ support groups were incensed.
I have followed this debate partly because I know a number of people who suffer from the condition, and also because long Covid resembles it, which means that we will be seeing many more patients with similar baffling symptoms. Of course, everyone hopes that greater understanding of the condition will lead to a cure, but there is a lack of funding for proper research.
But there is also, surely, room for a different paradigm. 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.