Paul Has Measles is a free children's book about viruses and vaccines available in 16 languages (By David Tuller, DrPH
Earlier this week, I blogged about a story in The Observer that provided an inaccurate description of what it called chronic fatigue syndrome. For much of the piece, the writer, Eleanor Morgan, offered a sympathetic portrait of people, including herself, experiencing prolonged symptoms after an acute bout of Covid-19. A lot of what she presented was informative and likely helpful for others in that situation.
Unfortunately, as I noted, Morgan got it wrong when she turned to CFS. For this section, she appears to have relied on one set of sources–in particular, those who style themselves biopsychosocialists. And maybe because these biopsychosocial sources were speaking within their presumed field of authority, she did not dig deeper in order to present the more complicated reality—that the theoretical framework she highlighted has been seriously challenged in recent years and is now in threat of collapse.
This ongoing shift broke into public view last month when the National Institute for Health and Care Excellence (NICE) released the draft of its new ME/CFS clinical guidelines, which repudiate the long-standing psychiatric hypotheses governing the national approach to the illness. The NICE announcement was widely covered in the UK, including in The Times, The Telegraph, The Guardian and BMJ.com. (In the US, STAT, ran a piece I co-wrote with Northwestern University law professor Steven Lubet.)
Sunday’s Observer article immediately came under criticism—including (obviously) from me. But I want to stress that this is just one article, from a writer (an excellent writer, judging from this example) who is suffering from perplexing symptoms and struggling to figure out what she and others in a similar plight should do. Morgan’s piece has received an onslaught of attention, and many of the tweets and comments have probably been difficult to read. In my many years as a journalist, I have definitely gotten things wrong. And at times it took some time to absorb strong critiques, get beyond my defensive posture, and reassess what I’d written.
So again—this is one article, to be followed quickly by others. And today, sure enough, The Guardian published its own piece on prolonged post-Covid symptoms–a well-reported column called “Is long Covid contagious and can children get it?: your questions answered.” (The Guardian and The Observer have corporate links while being editorially separate.)
In this new article, Linda Geddes, a Guardian science correspondent, addresses the relationship between ME/CFS and long-Covid in a manner more aligned with biomedical reality than with unproven psychiatric theorizing about how patients “compound” their fatigue by “catastrophizing” it. This follows a November piece by Geddes called “Long Covid: overlap emerges with ME – including debate over treatment,” which was an impressively nuanced account of the current situation.
In today’s piece, Geddes quotes both Charles Shepherd, medical adviser to the ME Association, and William Weir, an infectious disease physician who has long been an advocate for appropriate patient care. Geddes had also reached out to me a few weeks ago. We exchanged e-mails and I promised to answer her at greater length. This morning, while reviewing our correspondence, I discovered that a further response I thought I’d sent with various information and links remained in draft form, undispatched!
Oops! Sorry, Linda!!
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Paradigm as obstacle
In fact, the main obstacle to change has not been an individual writer or an individual news article or news organization. And it hasn’t been the PACE trial on its own. If that were the case, the fact that it has been refuted convincingly would have ended the whole matter. The real obstacle is the paradigm that has dominated this domain of medicine and science for the last three decades–the paradigm that incorporates the deconditioning-and-false-illness-beliefs hypothesis and the accompanying GET/CBT treatment strategy. PACE was just its most obvious and prominent manifestation.
In the late 1980s, a committed commando of mental health professionals launched a successful campaign to impose this paradigm on research and health care policy involving what they called CFS. Over the years, these experts have gaslighted patients with misinformation while touting their own subpar work—much of which actually undermines rather than supports their claims of treatment effectiveness. Patients and others who have rejected this prevailing dogma have been dismissed by this group and its enablers as hysterical and anti-science zealots.
As I’ve suggested before, these biopsychosocial ideological brigades are this saga’s counterparts to President Trump and his immediate circle—they all remain in public denial about reality, whatever they actually believe privately. (I assume Professor Sir Simon Wessely, who prides himself on his clinical trial bonafides, recognizes that it is not acceptable for studies to include participants who can be “recovered” at baseline on key measures.)
In this context, top journal editors are performing the critical role of enablers, as have Republican senators like Mitch McConnell and Lindsey Graham in the US political realm. Like McConnell and Graham, these journal editors are smart, and they must or at least should know better. For whatever reason or collection of reasons, they cannot bring themselves to acknowledge that in this domain of science they have published what can only be called crap—and potentially harmful crap at that.
The steadfast refusal of editors at leading journals to protect the literature from egregious methodological and ethical violations is as disturbing to me now as it was when I started this project–even if it is no longer surprising. I guess a powerful paradigm can compel even very intelligent people to do stupid things.
