We agree with George Monbiot that the death of Maeve Boothby O’Neill was tragic and should have been avoided. Unfortunately, Monbiot draws generalizations from her sad death based on a view of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) that is itself outdated (Maeve Boothby O’Neill died because of a discredited view of ME.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?, October 18).
Monbiot suggests that such illnesses are generally considered physiological or psychological. This is an outdated dualistic view of any disease, let alone ME/CFS. Many such diseases have been shown to result from a dynamic interaction between biological, psychological and social mechanisms. Just one example from our own research has shown the important role of certain viruses in causing the disease.
Monbiot continues to reject rehabilitative treatments, such as cognitive behavioral therapy and graded exercise therapy, based on what he says is flawed research. Yes, this research, some of which has led us, has been criticized by some, but it remains valid; no relevant paper has been retracted and many systematic reviews and meta-analyses have found the approaches to be beneficial. Remarkably, the National Institute for Health and Care Excellence (Nice) has indeed withdrawn its previous support for these treatments, leaving patients with no evidence-based ways to get better. But this new Nice guidance is being contested, 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 the most should be listened to, and that care for such patients is sometimes inadequate. Therefore, we should not reject treatments that have been shown to help a lot.
Peter White
Emeritus Professor of Psychological Medicine, Queen Mary University of London
Trudie Chalder
Professor of Cognitive Behavioral 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 bone”. However, if I repeatedly break my leg due to a penchant for jumping off rooftops, or my exposure to a dangerous work environment, then these psychological and environmental factors are also worth considering. ME/CFS is to a broken leg what the Amazon rainforest is to your local park – it is an extremely complex, multifactorial chronic disease that is still 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 meant to psych out those of us living with ME/CFS. The symptoms are real, debilitating, and can make life completely miserable.
However, we humans are psychobiological organisms whose brains and bodies shape themselves according to our social environment. People with ME/CFS often experience periods of chronic and acute stress in the period before becoming ill. 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-sacrifices. Eventually, the straw that breaks the camel’s back comes, typically in the form of a viral infection such as Covid or glandular fever. This last stressor shifts the body into a state of dyshomeostasis that appears to become persistent, at least in part due to the sensitization of the central nervous system.
Emerging research is helping us better understand possible physiological mechanisms of ME/CFS. A key question we must ask, however, 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
