By David Tuller, DrPH
News organizations continue to misrepresent ME (and its various iterations) in their coverage of what has come to be called long-Covid. A current UK example is Sundayâ€™s Observer article by writer Eleanor Morgan, who is experiencing prolonged symptoms since falling ill last spring. (It’s on The Guardian site; the two organizations are linked in some way.) Hereâ€™s Morgan’s bio on the website for the literary journal Granta, to which she has also contributed: â€œEleanor Morgan is a writer based in London. Her latest book, Hormonal: A Conversation About Womenâ€™s Bodies, Mental Health and Why We Need to Be Heard (Virago) is out now. She is also training as a psychologist.â€
Much of Morganâ€™s Observer article is a well-written, sympathetic and informative account of how she and various others are coping with their health challenges and the accompanying emotional roller-coaster. Then the article tackles the possible relationship between long-Covid and what it refers to as chronic fatigue syndrome. Thatâ€™s when it takes a wrong turn. Hereâ€™s the relevant passage:
“CFS is often diagnosed when fatigue and other prolonged symptoms cannot be medically explained, but a â€œtriggerâ€ illness or event is commonly identified. The complex nature of CFS means that improved medical testing is only part of the picture for providing better help for those living with it. Exploring the emotional component is integral, because CFS is often informed by a personâ€™s underlying mental health and past experiences. Fatigue is compounded by catastrophic thinking. Patience, empathy and validation, then, are key to any successful care pathway, particularly in light of the well-established link between CFS and those who have experienced childhood trauma. The precise underpinnings of this link are not fully understood, but itâ€™s clear.“
Ok, then. Where to start? The â€œwell-establishedâ€ and â€œclearâ€ link between CFS and a history of childhood trauma exists mainly in the imaginations of those who perpetuate this belief. The same is true for the argument that the illness is â€œinformedâ€ by someoneâ€™s mental health status. The purported evidence for such claims falls apart under scrutiny. People with a history of childhood trauma are more likely in general to have poorer health outcomes. This has nothing specific to do with CFS.
The same is true of the notion that the illness is â€œcompounded by catastrophic thinking.â€ This hypothesis is promoted by the CBT/GET ideological brigades, who find in their studies that patients reporting worse symptoms are also those categorized as â€œcatastrophizingâ€ based on their responses to a set of questions. Yet the questions that supposedly measure â€œcatastrophizingâ€ are themselves suspect because they appear to presume the respondents do not suffer from a serious organic illness and that therefore expressions of concern about symptoms are inherently exaggerations qualifying as â€œcatastrophizing.â€
In any event, the trouble with this apparent association between â€œcatastrophizingâ€ and worse outcomes is that the causal relationship is just as or more likely to run the other wayâ€”those who have worse physical symptoms are more likely to accurately predict that they will continue to have worse physical symptoms. In other words, they have correctly interpreted reality, not â€œcompoundedâ€ their suffering with irrational â€œcatastrophic thinking.â€
When such misrepresentations appear in widely circulated articles, it is easy to blame the writersâ€”and of course anyone putting out health information to the public should be held to appropriate standards. But often reporters and journalists are themselves subject to the misinformation disseminated by supposedly reputable sourcesâ€”and might not realize they are getting suckered.
I do not consider the Science Media Centre, Professor Sir Simon Wessely, the PACE authors, and their cabal of like-minded colleagues to be reputable sources. They all have a long history of perpetuating untruths in this domain of science. Unfortunately, journalists not steeped in this saga will often end up relying on what Irish psychologist Brian Hughes has called â€œeminence-based medicineâ€â€”as seems to have happened here.
Anyone writing on the issue of ME/CFS, including Morgan, should certainly take it upon themselves to review the new NICE draft of clinical guidelines for the illness. These recommendations repudiate the standard but bogus arguments still being advanced by the ideological brigadiers, which have now been replicated in the CFS section of this article.
ME Association responds to The Observer
The Observer article has occasioned much comment among the ME twitterati and in online discussion groups. Charles Shepherd, medical adviser to the ME Association, has sent the following letter to the news organization:
The article on Long COVID by Eleanor Morgan contains factual inaccuracies about factors that (a) predispose a person to developing ME/CFS and (b) perpetuate ME/CFS.
I refer, in particular, to the following paragraph:
â€œExploring the emotional component is integral, because CFS is often informed by a personâ€™s underlying mental health and past experiences. Fatigue is compounded by catastrophic thinking. Patience, empathy and validation, then, are key to any successful care pathway, particularly in light of the well-established link between CFS and those who have experienced childhood trauma. The precise underpinnings of this link are not fully understood, but itâ€™s clear.â€
There is no solid research evidence to substantiate claims that:
1 CFS is often informed by a personâ€™s underlying mental health and past experiences
2 Fatigue is compounded by catastrophic thinking
3 There is a well-established link between CFS and those who have experienced childhood trauma
All three inaccuracies require a factual correction as soon as possible.
I would suggest that the author also has a look at the new NICE guideline on ME/CFS:https://www.nice.org.uk/â€¦/GIDâ€¦/documents/draft-guideline
And whilst appreciating that Dr Tomlinson is expressing an opinion, there is again no evidence to show that the development of either ME/CFS or Long COVID are â€˜rooted in traumaâ€™.
As a doctor with personal experience of developing a severe post viral fatigue syndrome following a chickenpox encephalitis infection I had a very happy childhood with no history of childhood trauma, or any other trauma.
Like everyone else with ME/CFS, and LongCOVID, I failed to recover from viral infection and do not want to be told that it was caused by having a traumatic childhood
Dr Charles Shepherd Hon Medical Adviser, ME Association
Research reference relating to childhood adversity and ME/CFS: https://meassociation.org.uk/â€¦/MEA-Summary-Reviewâ€¦