Trial By Error: The Observer Slips Up; ME Association Responds

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 Sunday’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.) Here’s Morgan’s bio on the website for the literary journal Granta, to which she has also contributed: “Eleanor Morgan is a writer based in London. Her latest book, Hormonal: A Conversation About Women’s Bodies, Mental Health and Why We Need to Be Heard (Virago) is out now. She is also training as a psychologist.”

Much of Morgan’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. That’s when it takes a wrong turn. Here’s the relevant passage:

CFS is often diagnosed when fatigue and other prolonged symptoms cannot be medically explained, but a “trigger” 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 person’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 it’s clear.

Ok, then. Where to start? The “well-established” and “clear” 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 “informed” by someone’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 “compounded by catastrophic thinking.” 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 “catastrophizing” based on their responses to a set of questions. Yet the questions that supposedly measure “catastrophizing” 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 “catastrophizing.”

In any event, the trouble with this apparent association between “catastrophizing” and worse outcomes is that the causal relationship is just as or more likely to run the other way—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 “compounded” their suffering with irrational “catastrophic thinking.”

When such misrepresentations appear in widely circulated articles, it is easy to blame the writers—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 sources—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 “eminence-based medicine”—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.

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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:

Dear Editors

Re: https://www.theguardian.com/…/eleanor-morgan-is-still…

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:

“Exploring the emotional component is integral, because CFS is often informed by a person’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 it’s clear.”

There is no solid research evidence to substantiate claims that:

1 CFS is often informed by a person’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/…/GID…/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 ‘rooted in trauma’.

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

Your sincerely

Dr Charles Shepherd Hon Medical Adviser, ME Association

Research reference relating to childhood adversity and ME/CFS: https://meassociation.org.uk/…/MEA-Summary-Review…

Comments on this entry are closed.

  • CT 30 November 2020, 4:17 am

    Dr Tomlinson doesn’t appear to have even kept up with the psychosomatic theorists who now admit that there doesn’t have to be any trauma. He seems to think that there is trauma nearly all the time in his patients who present with chronic pain -https://twitter.com/tortoise/status/1332402687640559622 , that their pain is a symptom of that trauma/stress. It wouldn’t really be very surprising if he found an association, because apparently ‘trauma’ can include things that most people are likely to experience in their lives, such as the death of a relative. I notice that he is a GP in Hackney, so I wonder if he’s involved in any way with the ‘PCPCS’ where 23% of patients with medically unexplained symptoms who were referred to the service by their GPs got worse in their ability to physically function -https://opposingmega.wordpress.com/2020/08/19/so-what-if-23-get-worse-2/ . It looks to me like the more vulnerable people in our society are being harmed further by being denied good biomedical care on the basis of the psychosomatic model, but doctors, like Tomlinson, (who are presumably well-meaning), don’t seem to think about it that way around.

  • Lady Shambles 30 November 2020, 6:47 am

    The ‘catastrophizing’ phony dogma of the BPS lobby is a dangerous and potentially lethal construct. Meirion Llewellyn ( head honcho under Borysiewicz at the old ‘CFS’ [whatever that is] clinic at the UHW) was keen on this notion. So keen he almost ended my life though his prescribing of wholly unnecessary psyche medication and certainly left me with iatrogenic harm in the form of akathisias which were initiated by the drug regimen and continue to this day (all of this can be verified by members of my family). The BPS model is ‘harm in action’.

    Having said that my knowledge and understanding of my disease was in no way good enough to prevent me from the harms described above. The patient charities did not, at that time, provide a proper understanding of the politics around this disease, nor do they still imo. Had they done so I might have been better prepared. Obviously one of those charities was itself colluding with the BPS. Maybe if clear directions had been taken, such as adhering to (and demanding from others) a sensible criteria (CCC at that time, or more recently ICC) and silly foibles around the ‘opathy’ word had been kicked into the long grass and, instead, making patients aware of the ‘dangerous’ practitioners in the community..ie who to avoid (most of them) and those who were ‘safe’ (few of them … ).. then maybe some of us would have avoided harms, maybe some of us would be less precariously ill than we are now? Maybe some would not have taken their own lives? Thankfully I found the information I needed via other quarters such as the work of Williams and Hooper.. people I could trust to say it as it is. It’s good to add David Tuller to the list of people who visit the evidence and report it without favour, it’s a shame others who report in mainstream media fail to do this and it’s a shame that in 2020 this is still happening. We should be so past this now…

  • Hilary 30 November 2020, 7:35 am

    It is all explained! At last, I know what has caused 30 years of illness. It must have been the death of an unnamed kitten at age 9 (or was it 8?). Or was it the goldfish incident? Clearly, nothing to do with viral encephalitis. Silly me.

  • William Weir 30 November 2020, 7:37 am

    The purveyors of psychosomatic theory are at it again, as they were with ME/CFS. The scientific evidence indicating a physical cause for ME/CFS is now compelling, and “LongCovid” is looking very much like a variant of ME/CFS. To date, too many people with ME/CFS have been damaged, some permanently, by the idea that psychological dysfunction is the root cause. This can’t be allowed to happen with LongCovid.

  • CT 30 November 2020, 8:18 am

    After years of patients’ raised concerns falling on deaf ears, the Royal College of Psychiatrists now seems willing to acknowledge that they might have got it wrong over the harms that psych drugs can cause -https://blogs.bmj.com/bmj/2020/09/25/wendy-burn-medical-community-must-ensure-that-those-needing-support-to-come-off-anti-depressants-can-get-it/ . But where is their apology to people like you, Lady Shambles? Where is their apology to all those patients with ME or ‘medically unexplained symptoms’ who were put on inappropriate psych drugs for their supposed catastrophizing and ended up being harmed as a result?

  • Lady Shambles 30 November 2020, 8:30 am

    CT said: “But where is their apology to people like you, Lady Shambles? Where is their apology to all those patients with ME or ‘medically unexplained symptoms’ who were put on inappropriate psych drugs for their supposed catastrophizing and ended up being harmed as a result?”

    Quite so! Where indeed? And the gaslighting continues to this day. In some respects (for me) it’s certainly been, how shall I put it?: ‘ a family affair’ (also neatly diarised etc should I decide to go the ‘complaint’ route, health willing).

  • jimells 30 November 2020, 10:06 am

    “compounded by catastrophic thinking.”

    The work of Regius Professor Sir Simon and pals has certainly been a catastrophe for millions of sick people. They will never admit to anything, on advice of counsel.

    If Long Covid looks like ME but is widely acknowledged as physiologic illness, the psychosocial ME house of cards will collapse. That will be a catastrophe for the great professor and all the rats feeding off his bogus work.

  • Lady Shambles 30 November 2020, 11:08 am

    I thinks it’s both naïve and inappropriate at this stage to suggest that Long Covid is synonymous with ME at all. Covid attacks certain parts of the body which aren’t routinely affected in pwme, for example the lungs. Let’s not all get on the caravan of hope that Covid can enlighten & improve our plight. And what about people who have ICC ME and yet *also* have a Long-covid presentation riding along on top of their ME where both elements are distinct from one another?

  • CT 30 November 2020, 11:09 am

    So what, if 23% of MUS patients get worse?

    It seems that 23% of MUS patients who were referred to the PCPCS in the City and Hackney GP catchment area got worse according to their everyday physical functioning (WSAS) score -https://opposingmega.wordpress.com/2020/08/19/so-what-if-23-get-worse-2/. I wonder if Hackney GP Dr Tomlinson thinks that’s ok?

  • lucie webb 30 November 2020, 12:48 pm

    Thank you for your politeness and persistence, David.
    If anyone knows Eleanor Morgan could they suggest to her that by the time she qualifies there will be such an overabundance of psychologists that she will find it hard to earn a living, given that us fickle patients will have deserted mental health treatments and chemical coshes and found more effective treatments with more hands on methods.

  • Richard 1 December 2020, 10:30 am

    Well done on pointing out the flawed thinking David.

    I hope that through your rational argument and mild mannered opposition Eleanor can come to understand she has been fed and repeated a meritless unscientific “fake news” paradigm based on stereotypes which exploit prejudice to try to game the academic system instead of science founded in empirical data.

    I have been truly saddened by the way some writers for The Guardian, which usually stands up for badly treated minorities, have the wrong end of the stick on this issue. It suggests briefing activities by invested individuals, which we need to properly oppose to ensure a correct and helpful understanding of the nature of the condition is reported in the media.

    People with post-viral syndromes need helpful advice now, more than ever.

  • Steve Hawkins 2 December 2020, 1:48 pm

    Reads like she just copied that whole block from a CBT pamphlet. Has anyone searched for similar blocks of text? She might be studying psychology, but, clearly, has a long way to go!