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?