A disturbing job advert has come to light which shows that outdated, unscientific and harmful attitudes to ME/CFS are still alive and well in the NHS. The ad, for the Oxford University NHS Foundation Trust, is for a clinical psychologist to divide their time between working with the ME/CFS Service and the Renal and Transplant Medicine service.
ME/CFS is a serious multisystem illness. Research has shown those living with the condition have pathologically abnormal neurological and cardiovascular functioning, immune abnormalities, and reduced capacity for aerobic ATP production. Its unique and pathognomonic symptom is post-exertional malaise (PEM), also called post-exertional symptom exacerbation (PESE). Symptomatically PEM looks like a relapse, triggered by (often apparently mild) physical, cognitive or social exertion or sensory stimulation, with a delay of usually 24-48 hours, and lasting for days, weeks, or longer. Physiologically, PEM is characterized by altered gene expression, a lowered anaerobic threshold, and a reduction in VO2max, which measures the body’s capacity to take in and utilize oxygen.
There is an older view of ME/CFS (or ‘chronic fatigue syndrome’ as it was called) which held that the condition was essentially psychosomatic, caused by ‘false illness beliefs’; essentially, in this view, people with ME/CFS were mentally ill. While scientifically discredited, this view still looms large in the popular imagination, to the detriment of patients, who may face stigma and blame from loved ones, and a lack of understanding from their schools or workplaces.
Shockingly, it seems that these outdated attitudes are still alive and well among the healthcare professionals working at the Oxford University NHS Foundation Trust.
As reported by The Canary, the job advert includes this:
may require managing difficulties in understanding (such as cognitive deficits, or unconscious denial of psychological conflicts), or overcoming communication difficulties with patient who are hostile, antagonistic, highly anxious or psychotic.
and this:
including verbal abuse and risk of physical aggression (for example from people with behavioural problems or enduring mental illness).
It is hard to understand why a service for those with ME/CFS (or ‘CFS’ as the Oxford University NHS Foundation Trust calls it – a term for the condition which patient groups say they find demeaning) should employ a psychologist. Specialist services for ME/CFS exist in some, but not all, parts of the UK. Most are staffed by occupational therapists who advise patients on a specialised form of illness management called ‘pacing’ which allows people with ME/CFS to live their lives as fully as possible within the limits set by the illness, while avoiding PEM. A rare few of these services are staffed by a doctor who is knowledgeable about ME/CFS, and patient groups have long been calling for this to be the case everywhere.
The 2021 NICE guidance calls for each ME/CFS patient to be cared for by a specialist, multidisciplinary team. This lofty goal is far from the reality; most people with ME/CFS do not even have access to a doctor who is knowledgeable about the condition. The Department for Health and Social Care’s interim delivery plan on ME/CFS, has brought hope that every person living with the condition might finally have access to a knowledgeable doctor.
Given all this, for people with ME/CFS, the Oxford University NHS Foundation Trust advert looks like a step back into the dark ages of dismissive attitudes to ME/CFS, when people living with the condition were treated as though they were either hypochondriacs, malingerers, or mentally ill. (It should go without saying that those who are actually mentally ill deserve the best possible care and treatment for their illness.)
I have no doubt that the Oxford University NHS Foundation Trust will either remove this ad or remove the most problematic passages from it. I hope that they will also take action to counter the outdated and dangerous attitudes that it reveals, for instance, by requiring that all the medical staff of the ‘CFS Service’ undergo training to bring their knowledge of ME/CFS up to date. Until this happens it seems that this service may be, horrifyingly, not only unhelpful but actually harmful to patients.
The Oxford University NHS Foundation Trust did not reply to a request for comment.
ME/CFS Medical Education Campaign 