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!!
*******
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.
Comments
12 responses to “Thoughts on The Observer, The Guardian, and Paradigm Shift”
Great analogy.
When Trump leaves the big house perhaps we in the ME/CFS arena might see a resonating action with any one of the relevant players in our sideshow calling it quits on their masquerade.
Paradigm shifts in science are always painful. Numerous scientists with prominent positions are heavily invested in the existing paradigm. I also believe that many of these scientists deep down understand that their theories and publications in the field don’t hold water. However, I think we should not underestimate the power of rationalizing. It is an exceptionally strong force to maintain false science beliefs.
These journal editors David mentions have their own paradigm that there is ‘too much medicine’, and they cling to the BPS approach as the means of ridding the world of it so saving the universe. It appears to have become their own belief system and it doesn’t seem to matter that the science is faulty. But the researchers they prop up, presumably feeling that they have (or have had) the upper hand, are running away with themselves now and taking this approach to a ludicrous extreme with their own ‘paradigm shift’ as described here by Michael Sharpe – https://www.youtube.com/watch?v=DqDTAHUMnq4 – one of the PACE trial principal investigators. Good journalists need to be made aware of where this is heading. All disease that isn’t immediately life-threatening appears to be viewed by people like Sharpe as rooted in the psyche, and so psychiatry will have the answers for it all and will become top dog over physical medicine. (It’s strange that they still see any need for psychiatry when they claim that there shouldn’t be any mind-body split!) Gaslighting and misdiagnosis will become the norm in their incredibly reckless new take on medicine, with the most disadvantaged and vulnerable in our societies being most at risk as they are perceived by their doctors to be the most at risk of somatization. We’ll have refugees with TB being told that their illness is due to their trauma….or is that happening already? I seem to remember somebody telling me it was. The world (forget about medicine – doctors are all being drip-fed this nonsense) needs to wake up fast to what is going on and call a stop to it now.
Tuller and others have tirelessly critiqued the persistent, misleading chronic fatigue models(CFS) that postulate CFS is a psychiatric illness. It is time to move beyond the debunked psychiatric myalgic encephalomyelitis (ME) hypotheses incorporating deconditioning-and-false-illness-beliefs (Tuller) that continue to adversely influence the (mal)treatment of ME patients. Both the invasive cardiopulmonary exercise test (iCPET) and 2-day cardiopulmonary exercise test(2-day CPET) directly refute these psychiatric hypotheses (See David Systrom or Elizabeth Keller’s research). So, it is time to address the adverse consequences for patients who are told they are catastrophizing their condition and provide updated education to providers and patients alike. Ethically, it is imperative to provide patients with care that helps not harms. Journal editors bear a specific responsibility for ensuring the studies published are scientifically sound. Sadly, as Tuller notes above, many are performing the role of enablers as they continue to promote substandard work. This must change- do no harm.
Not too sure about the approach of blaming paradigms – it’s a bit like writing “war broke out” instead of “US attacked Iraq”. As for the biopsycho sociopaths of the Wessely School, they are mercenaries who are Just Following Orders (a cop actually said that phrase to me during a police raid).
Until a very bright light is focused on the order-givers, the policy of deliberate indifference will continue. That policy is more vital than ever with the prospect of many thousands of Long Covid sufferers filing disability benefit claims in the near future.
How do we know that there is a policy to not solve the ME riddle? NIH Director Collins said so:
“We have done what we can in terms of the resources, both intramurally and extramurally.” [1]
[1] http://occupyme.net/2019/04/17/i-want-to-believe-dr-collins-but-i-dont/
I don’t understand why “biopsychosocial” seems to mean entirely psychosocial to the exclusion of anything biological.
It’s rarely social either, more antisocial I’d say.
Surely the standard of research done by the biopsychosocialists has become so poor that they no longer deserve to be classed as either scientists or professionals.
@CT
“(It’s strange that they still see any need for psychiatry when they claim that there shouldn’t be any mind-body split!”
Thats the paradox. They (CBT BPS) argue about ending the dualisme of mind-body , but then the biological part is cut off, denied and only the psyche excist in the CBT model. Which leaves only a theoratical false illnessbeliefs, and fearavoidance model. Biomedial research is also boycotted, because it would only confirm false illness beliefs. Patients reporting detoriation is also denied. Leaving just the P without BS which now has turned into CBT bullshit model.
Meanwhile, Peter Lilley remains in the House of Lords and not in jail where IMV he ought to be. When is he going to be held to account for introducing Unum and their ideas into Britain’s social security system?
Excellent piece, Dr. Tuller! Please keep em coming!
good