It is time for doctors to replace apathy with empathy in ME/CFS care.
The 2021 NICE ME/CFS Guideline recognises that many ME/CFS patients have experienced prejudice and disbelief, and have felt dismissed and disbelieved by health professionals who are often poorly trained in how to diagnose or manage ME/CFS.
Some patients may also experience a lack of social support from family members, friends or social care professionals, who may also struggle to understand the illness and its impact on individuals.
In light of ongoing concerns about the treatment of ME/CFS patients in the NHS, the former Secretary of State for Health, Sajid Javid, made a statement on ME/CFS on International ME Awareness Day 2022, saying, “We must trust and listen to those with lived experience of ME/CFS.”
Mr Javid helped establish a new ME/CFS Task and Finish Group, responsible for producing a strategic delivery plan for improving research, awareness and the treatment of ME/CFS.
One subgroup of the Task Force, the Attitudes and Education Working Group, is responsible for developing specific solutions to address the challenges surrounding attitudes towards ME/CFS. This is specifically targeted at health professionals involved in the care of people with ME/CFS, and includes a focus on the education of doctors, nurses, physiotherapists and other healthcare professionals about all aspects of the illness.
In light of these issues, it is welcome that the University of Leicester recently announced the UK’s first and only centre dedicated to promoting empathetic healthcare. The new director, Professor Jeremy Howick, formerly of Oxford University, has spent much of his career promoting empathetic medicine. He believes empathy has the power to change outcomes for patients.
A systematic review of the literature on the role of empathy in doctor-patient consultations found good evidence that physician empathy raises patient satisfaction and has a direct positive relationship with strengthening patient enablement. Empathy also lowers patients’ anxiety and distress, and delivers significantly better clinical outcomes.
This new centre could not come a moment too soon for people living with ME/CFS, who have long called for more recognition of the illness among doctors and allied health professionals, and for doctors to update their communication skills and entire approach to ME/CFS.
The need for more empathetic medical care and for greater recognition of the illness was brought into sharp focus recently by The Times writer Sean O’Neill in his powerful BBC Radio Women’s Hour interview on 28 May 2022 about the death of his daughter, Maeve, who passed away aged 27 last October.
Maeve’s life was affected by ME/CFS for almost a decade. Mr O’Neill said he felt compelled to speak about his experience of having to watch his daughter suffer neglect and a lack of support from healthcare professionals.
He spoke eloquently about the need for doctors to get to grips with ME/CFS. He recounted that the few times Maeve had been admitted to hospital, she found it particularly distressing, more often due to doctors questioning the cause of her symptoms and even dismissing her ME/CFS status and need for acute medical care.
Maeve endured many obstacles seeking care that contributed to her feeling isolated, and she therefore wanted to remain at home rather than return to hospital when her health worsened.
Maeve’s experience is not an isolated one. In 2017, Merryn Crofts died, aged 21, of malnutrition related to her severe ME/CFS. Sophia Mirza died in 2005, aged 32, after a long battle with severe ME/CFS. Those most severely afflicted by ME/CFS are often the most neglected, yet are perhaps the most in need of support from doctors and the NHS.
Maeve, Merryn and Sophia had to fight one battle dealing with the ravages of ME/CFS symptoms, including difficulty eating and digesting food, pain, extreme fatigue, and problems sleeping. But they also had to fight another battle dealing with doctors who may have viewed aspects of severe ME/CFS, such as malnutrition from difficulty eating, as evidence of anorexia, rather than as a feature of very severe ME/CFS.
Doctors remain poorly informed and often misinformed about the illness and its impact on sufferers. The new Task Force on ME/CFS and the introduction of the Leicester centre dedicated to promoting empathetic healthcare will hopefully mark the beginning of a shift in medical practice towards more patient-centred and empathetic medical care.