By David Tuller, DrPH
One interesting aspect of the recent inquest into the death of Maeve Boothby O’Neill was the widespread news coverage. Maeve died in October, 2021, in Exeter, UK, of malnutrition arising from her severe ME, as the coroner ruled a few weeks ago. During the two weeks of testimony, from July 22nd through August 2nd, print and broadcast reports routinely highlighted the significant testimony of the day.
To a surprising extent given the history of this illness, journalists and their media organizations took it seriously as a pathophysiological disorder. The articles and TV reports generally seemed to take it for granted that Maeve was suffering from a medical and not a psychological condition. They also largely framed the decisions about Maeve’s care made by hospital consultants and other clinicians, both within and outside of the UK’s National Health Service (NHS), as ignorant, wrong-headed, and sometimes mind-boggling.
In a break from what seemed to be a long-standing tradition, these articles and reports did not include the kinds of knee-jerk oppositional views routinely pronounced by members of the CBT/GET ideological brigades. (At least as far as I saw; I might have missed something.) None of the three lead PACE authors—Professors Trudie Chalder, Michael Sharpe, and Peter White–were trotted out for comment. Nor was Professor Sir Simon Wessely, and other like-minded colleagues. In the past, these misguided experts drove the news agenda in this domain, and in general would have been called on by journalists to present their views whenever CFS or ME or ME/CFS was being discussed or debated.
While the overall absence of their bleating in this round of coverage has been a refreshing change, there has been one prominent exception. After the inquest’s first week of testimony, The Observer (published by The Guardian on Sundays in a relationship that I don’t fully understand) ran a comment by Dr Alastair Miller, a physician and CBT/GET “truther”who used to run a CFS/ME clinic. His comment was a piece of trash; I critiqued it here. That’s about all I’ve seen from this lot in recent weeks. Perhaps they have recognized that hijacking Maeve Boothby O’Neill’s death to promote their views on CBT and GET would come across as distasteful, tone-deaf and offensive—as it did in Dr Miller’s case.
In part, the respectful tone toward ME is likely attributable to the status of Maeve’s dad, Sean O’Neill, as a prominent reporter at the UK’s most prominent newspaper, The Times. His stories about Maeve made her inquest much more of an anticipated news event than it would have been otherwise. Perhaps his articles themselves prompted the coroner’s office to finally schedule the inquest after long delays. In its own coverage, The Times accepted at face value that Maeve had a medical issue. Other news organizations largely seemed to follow that lead.
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BBC Breakfast links ME and Long Covid
BBC Breakfast, a popular morning show, took a similar tack this week in a 15-minute segment that highlighted the links between ME and Long Covid. The segment had a couple of cringe-inducing moments, such as when one of the presenters referenced “extreme tiredness” as a core symptom. Oops! (Another core symptom was said to be “insomnia.”) But presenters in such contexts can’t be expected to be experts or to get everything exactly right. No matter. Overall the segment was well-done, informative, and sympathetic. (It did not mention the recent inquest.)
The segment included pre-taped interviews with two people whose lives have been transformed and upended by Long Covid. Karen Hargrave and her husband James both came down with Covid-19. While she partly recovered, he remains so severely disabled he can no longer speak. She fears having to rely on the NHS should he need to go into hospital at some point. As BBC Breakfast noted, Hargrave has launched a campaign called #ThereForME, which seeks to pressure the NHS to improve services for both Long Covid and ME.
Also featured was Oonagh Cousins, who was an Olympian-level rower before getting sick early in the pandemic. (I interviewed Cousins in June about her overall experiences as well as specifically about the Lightning Process.) In the program, she described how she felt when she realized she wouldn’t be able to participate in the Olympics: “It was completely devastating, I couldn’t believe it was happening.” In a spot-on observation, Cousins noted the following: “If we had done more to understand what was happening in people with ME, we would be in a much better place now to deal with all these people who have Long Covid.”
The segment also included two live interviews—one with Dr Binita Kane, a consultant respiratory physician at University Hospital of South Manchester, who was in the studio, and, on a remote link, Dr William Weir, an ME specialist. ME Research UK has offered a useful summary of their comments, as well as those from Hargrave and Cousins.
As with the inquest coverage, the fact that BBC Breakfast did not provide a response from a member of the CBT/GET cabal was notable. In their comments, Dr Weir and Dr Kane were allowed to rebut–unopposed and unchallenged–the psychological perspective and theories. Is this a new norm developing among UK journalists, or just a temporary blip?
I watched the BBC programme. I thought it was an interesting piece given how ‘joined at the hip’ the BBC and SMC have been for many years. The BBC is under a lot of pressure these days with recent scandals tarnishing the brand. It would do them well to, at last, get on the right side of history when it comes to ME.
Please stop shutting down the voice of people who want the same thing as you – for as many people to recover as possible. Recovery IS possible. Brain Training DOES work. I’m one of the huge number of people who have fully recovered using them. If we shut out the voice of the recovered we’re missing a massive trick.
In the BBC news item, I was pleased that Dr Weir raised the issue of the harmful counter-approach by a group of psychiatrists, and I thought that Dr Kane handled the interview skilfully. It’s been heartening to see much better coverage of ME at long last, but my worry is the continued expansion (in the UK especially) of the functional project that appears to be harming patients across medicine, and a possible shift away from ME/CFS being the prime exemplar for the management of diseases and conditions with medically unexplained symptoms to FND taking its place, with the concern that ME symptoms will simply be relabeled as functional problems and that doctors might now be discouraged from using the ME/CFS label so that this particular ‘functional somatic syndrome’ effectively becomes confined to history. It was predicted that this might happen if the NICE guidelines changed and it seems to me to offer an explanation for why there hasn’t been more pushback.
To my mind, the UK media needs to wake up to the appalling harm that the functional construct is doing across medicine and the NHS. I suspect that part of the change with the media is that a significant number of journalists are being affected by the functional project – whether that’s being affected/harmed themselves (e.g.s -https://www.theguardian.com/society/2023/oct/18/naga-munchetty-i-was-failed-and-gaslit-by-nhs-despite-debilitating-periods-and-symptoms#:~:text=Munchetty%20was%20finally%20diagnosed%20with,walls%2C%20in%20November%20last%20year. and -https://www.theguardian.com/media/article/2024/aug/08/kirsty-young-says-doctor-snorted-at-her-self-diagnosis-of-chronic-pain) or their family or friends being harmed, e.g. Sean O’Neill tragically losing his daughter. This was almost bound to happen when SO any people are being affected by this dangerous narrative. Perhaps proponents of the psychosomatic/functional model have decided that what the media says is less important than what doctors think and that they will concentrate their efforts on indoctrinating the latter? I think we’re at a critical point – with enough and the right media attention the functional project could be exposed. It certainly needs to be. All the dots need to be joined up.
A previous commenter appears to claim that brain training led to their full recovery but they don’t say exactly what they recovered from. The human body is rather adept at recovering from all sorts of diseases and insults and, with the positive psychology narrative that we’re bombarded with these days, of course people might like to think that they’ve played a part in that, just as some probably like to imagine that they ‘fought bravely’ and somehow contributed to their remission from cancer even though they almost certainly wouldn’t be alive but for all the medical interventions that they received. I don’t think anyone has said that it’s impossible for a sufferer to recover from ME without specific medical intervention but many people cannot recover on their own. They need the right medical interventions; they need good biomedical research to discover those interventions, and not to be told that they simply need to think the correct way.
To understand the wider picture, I recommend reading former medical health professional Debi Evans’ blog in the UK Column. It might explain to some extent why the Wessely team are not too worried about responding.
https://www.ukcolumn.org/blogs/debi-evans-blog-29th-august-2024
It is the ‘Silly season” here in the UK and the Psych lobby may all be away sunning themselves.
On their return we can usually expect a counter offensive ( as has happened before whenever anything significant has been published).
I hope this isn’t the case.
For far too long the UK media has allowed them a voice completely out of proportion to their number.
It was never a question of “balance” but two competing sides with science languishing due to the efforts of the BPS lobby to control and stifle ME research.
Their failed approach has led to the current misery of post viral patients and i am relieved that Long Covid doctors can see this
It would be an even bigger tragedy if LC goes the same way as ME Research.
AB commented: “It would be an even bigger tragedy if LC goes the same way as ME Research..”
And I’d say a bigger tragedy still if medicine in general goes the same way too (-https://www.youtube.com/watch?v=DqDTAHUMnq4).
Let’s hope that included in this year’s cognitive revolution (https://blogdredd.blogspot.com/2024/08/on-origin-of-genieology-6.html) will be a deep reach into the factual, evidentiary CBT/GET errors.
Ending with those errors fading into the obscurity of almost a century of dogmatic errors of the Eugenics type.