We agree with George Monbiot that the death of Maeve Boothby O’Neill was tragic and should have been avoided. Unfortunately, Monbiot draws generalisations from her sad death that are based on a view of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) that is itself outdated (Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen?, 18 October).
Monbiot suggests such illnesses are generally thought of as either physiological or psychological. This is an outdated dualistic view of any illness, let alone ME/CFS. It has been shown that many such illnesses are the result of a dynamic interaction between biological, psychological and social mechanisms. Just one example of our own research showed the important role of certain viruses in triggering the illness.
Monbiot goes on to reject rehabilitative treatments, such as cognitive behavioural therapy and graded exercise therapy, based on research that he suggests was flawed. Yes, this research, some of which we led, has been criticised by some, but it remains valid; no relevant paper has been withdrawn and many systematic reviews and meta-analyses have found the approaches to be beneficial. Remarkably, the National Institute for Health and Care Excellence (Nice) has indeed rescinded its previous support for these treatments, leaving patients with no evidence-based ways of getting better. But this new Nice guidance is contested, being based on a flawed review and interpretation of the evidence, as shown by an analysis by us and 48 other international experts.
We agree that those who suffer most should be listened to, and that the care of such patients is sometimes inadequate. That is why we should not reject treatments that have been shown to help many.
Peter White
Emeritus professor of psychological medicine, Queen Mary University of London
Trudie Chalder
Professor of cognitive behavioural psychotherapy, King’s College London
Michael Sharpe
Emeritus professor of psychological medicine, University of Oxford
George Monbiot says ME/CFS is “as physiological as a broken leg”. However, if I repeatedly break my leg due to a penchant for jumping off rooftops, or my exposure to a hazardous working environment, then these psychological and environmental factors are worth considering too. ME/CFS is to a broken leg what the Amazon rainforest is to your local park – it is a vastly complex, multifactorial chronic illness, which remains poorly understood from a medical perspective. As a clinical psychologist who has been working on my own recovery from the condition for nearly five years, I have come to view ME/CFS as existing at the confluence of body and mind. This is not intended to psychologise those of us living with ME/CFS. The symptoms are real, debilitating, and can make life utterly miserable.
However, we humans are psychobiological organisms whose brains and bodies shape themselves to our social environment. People with ME/CFS have often experienced periods of chronic and acute stress in the period before they become unwell. Not uncommonly, they carry the “allostatic load” of adverse childhood experiences, and as a result may have learned to meet the world in adaptive but unsustainable ways – such as being high achievers, perfectionists and self-sacrificers. Eventually, the straw that breaks the camel’s back comes along, typically in the form of a viral infection like Covid or glandular fever. This final stressor shifts the body into a state of dyshomeostasis that appears to become persistent at least partly due to the sensitisation of the central nervous system.
Emerging research is helping us to better understand possible physiological mechanisms of ME/CFS. However, a key question that we have to ask is this: what are the biological, psychological and social factors that create the conditions for this state of imbalance in the entire organism?
Dr Jake Hollis
Brighton
