By David Tuller, DrPH
Biopsychosocial Campaigners Target Long-Covid
New papers from the biopsychosocial campaigners often provide opportunities to highlight unwarranted assertions, misleading use of data, and—in particular–associations interpreted as if they were causal relationships and not, well, associations. An article co-authored by Trudie Chalder, a professor of cognitive behavioural therapy at King’s Collge London, and published recently in the Journal of Mental Health, deploys such strategies in its efforts to suggest that large swaths of those experiencing what is being called long-Covid are suffering from “somatic symptom disorder” (SSD).
The article, positioned as an editorial, is called “Concern for Covid-19 cough, fever and impact on mental health. What about risk of Somatic Symptom Disorder?” It recycles years of biopsychosocial shibboleths promulgated by Professor Chalder and her fellow campaigners.
SSD is a construct outlined in the DSM-5 (the American Psychiatric Association’s guide to diagnoses). The term is often used interchangeably with related ones, including “medically unexplained symptoms” (MUS), “persistent physical symptoms” (PPS) and “bodily distress syndrome” (BDS), although they all differ somewhat in how they define their cohorts. As the editorial explains, SSD “refers to persistent (6 months or more) and clinically significant somatic complaints accompanied by excessive and disproportionate health-related thoughts, feelings and behaviours regarding the symptoms.”
The SSD diagnosis contains a neat twist. Even patients with recognized illnesses like cancer can be diagnosed with SSD if they are viewed as having similarly “excessive and disproportionate” health-related fears and anxieties. That’s convenient for those interested in promoting psychological and psychiatric interventions. But rendering the diagnosis relies on determining what should be considered appropriate levels of health-related concern and what should be considered “excessive and disproportionate” for patients confronting serious disease. The potential for bias is self-evident.
Professor Chalder and other biopsychosocial campaigners are considered experts in this domain of illness, which in their own research they frequently refer to as MUS. Despite this expertise, she and others have demonstrated an unfortunate habit of mis-citing a seminal paper in the field in a way that more than triples the estimated costs of MUS to England’s branch of the National Health Service. On the back of such disinformation and a body of problematic research, they have engineered a major expansion of an NHS mental health program to include people with MUS.
The program, called Improving Access to Psychological Therapies (IAPT), was launched to provide cognitive behavior therapy (CBT) and related rehabilitative interventions for people with untreated anxiety and depression disorders. With the expansion to include MUS, the program has defined the category as including chronic fatigue syndrome (CFS), irritable bowel syndrome (IBS), and random somatic symptoms not identified as part of a syndrome. Not surprisingly, IAPT receives a shout-out in the new editorial. That raises the concerning prospect that long-Covid patients could find themselves being pushed toward IAPT—as if the interventions on offer were evidence-based treatment for their condition.
Purportedly definitive studies of the IAPT-type interventions have not turned out as planned. The PACE trial, which investigated a specialized form of CBT and graded exercise therapy (GET) for CFS, has been discredited in the eyes of much of the scientific community. An evidence review conducted for the development of a new ME/CFS guidance from the National Institute for Health and Care Excellence found most of the data for presumed benefits from these interventions to be of “very low” quality and the rest to be of “low” quality. The draft guidance from NICE, released in November, positions CBT as solely a supportive strategy and not as a treatment for the underlying condition, and it recommends against GET. That significantly undermines the argument for including ME/CFS in the IAPT program as an MUS.
More recently, major studies examining the use of specialized forms of CBT to treat irritable bowel syndrome and dissociative seizures (better known as “psychogenic non-epileptic seizures”) have hyped their findings while downplaying poor results—as I documented here and here. In fact, the online CBT program for IBS road-tested in the former study is now being marketed by a San Francisco company as an effective intervention for reducing symptoms—even though the study clearly documented that the benefits at one year were clinically insignificant.
Professor Chalder was a co-investigator not only of PACE but of the major IBS and dissociative seizure trials. Just saying.
Association Is Not Causation
It was predictable back in March that the biopsychosocial campaigners would seek to colonize the predicted cohort of post-Covid-19 patients suffering from profound fatigue and other non-specific symptoms. So this editorial holds no surprises.
Let’s stipulate that, yes, anxiety and depression and related states likely play a role in how symptoms are experienced. And anxiety and depression can express themselves in any number of ways–panic attacks, for example. But that stipulation is a far cry from presuming all unexplained symptoms should be attributed to anxiety and depression and related states. One corollary of that presumption is the apparent rejection of the possibility that undiscovered or as-yet poorly understood biomedical processes could be implicated in phenomena that at the moment remain “unexplained.” The history of medicine is littered with such errors.
Before addressing long-Covid, the editorial mentions an apparent association of feelings about and reactions to Covid-19 with somatic complaints, citing a study from last year that assessed this kind of association. “In the United Kingdom general population, covid-19 related anxiety has been found to predict general somatic symptoms, particularly fatigue, followed by gastrointestinal symptoms,” notes the editorial.
The cited article was a cross-sectional study—in other words, participants responded to a set of questions at a single point in time. The investigators used a novel scale to measure “Covid-19 anxiety” and also assessed symptoms. Those more anxious about Covid-19 reported greater somatic symptomology. The biopsychosocial assumption is that the Covid-19 anxiety is itself generating these somatic symptoms.
A major limitation of cross-sectional studies, like the one cited by the editorial, is the impossibility of distinguishing cause from effect. Studies with this one-point-in-time design can measure associations between indicators. The chronology of events—and therefore the possibility that one thing caused another–cannot be determined. And that is the case here.
The word “predict”–which was also used in the title of the cited study–could be easily interpreted as suggesting or implying causality. In this instance, however, it is being used in a statistical sense. The findings of the cited study could easily have been flipped around and rephrased to indicate that “general somatic symptoms, particularly fatigue, followed by gastrointestinal symptoms, have been found to predict covid-19 related anxiety.” When data are cross-sectional, both statements would be true.
During a pandemic, some people will be anxious and depressed and could become hyper-conscious of bodily sensations. But the reverse is also true–people currently experiencing bodily sensations would have legitimate reason for heightened anxiety about whether or not they might have covid-19. The cited paper acknowledged this issue in the limitations section, noting that “the temporal ordering of the variables cannot be established, and so the potential problem of reverse causation cannot be ignored.” But that doesn’t stop the biopsychosocial campaigners from treating this “potential problem” of interpretation as an afterthought relegated to the “fine print” of limitations sections, not a serious hole in their argument.
When it comes to long-Covid itself, the editorial continues in this vein, suggesting that the profound fatigue and other prolonged, non-specific symptoms as a likely result of biopsychosocial processes at work rather than pathophysiological ones. Highlighting irritable bowel syndrome as a parallel example, the editorial notes that “the developmental course of post-infectious IBS is also understood to be initially triggered by infection but maintained by social, psychological and behavioural factors.” These maintaining factors, per the editorial, include “negative illness beliefs, all or nothing behaviour, anxiety and depression.”
Let’s be clear: This is how the biopsychosocial campaigners hypothesize the developmental course of post-infectious IBS. Not surprisingly, they also have an intervention to offer for IBS–namely CBT, as outlined in the IAPT program. But the evidence for the effectiveness of CBT for treating the debilitating symptoms of IBS is no more reliable than the body of CFS research that has now been deemed in the NICE review as of poor quality.
In summing up, the editorial asserts that biopsychosocial models “provide a parsimonious route to the recognition that persistent multi-system symptoms can be produced by the interaction of physiological, cognitive, behavioural, emotional and social factors.” In fact, the most parsimonious and obvious explanation of the noted associations between symptoms and mood states such as “Covid-19 anxiety” is this: In a great many cases people are experiencing organic dysfunctions that have not yet been diagnosed or identified, which then cause them anxiety and distress–not least because the symptoms are often dismissed as arising solely from anxiety and distress.
13 responses to “New Biopsychosocial Paper on Long-Covid and Somatic Symptom Disorder”
Thanks again David for pointing out so clearly what these authors seem incapable of seeing. In my Facebook feed I’m constantly getting a CBT thing for IBS based on an Australian study. Haven’t looked at it yet because its too irritating.
It appears that this BPS crew have a habit of both a) having a one-sided view of their studies and b) glossing over the limitations of their studies in their abstracts and then citing the studies with no reference to the limitations and issues that must be considered.
To my mind, there is nothing more disturbing than the way they have done this, and continue to do this, with respect to their citing of the Nimnuan et al study (Nimnuan et al papers of 2000 and 2001) which found high rates of MUS in secondary care outpatient clinics. Although the study had serious limitations and also found deplorably high rates of MUS misdiagnosis – of up to 40% of patients initially diagnosed with MUS being misdiagnosed – BPS proponents continue to cite the study to persuade doctors that MUS prevalence is very high in secondary care without warning them about these problems. They do this in 3 papers/articles (including the editorial) in the recent January issue of the Royal College of Physician’s “Clinical Medicine” journal that concentrated on ‘functional’/MUS illness/disorders -https://www.rcpjournals.org/content/clinmedicine/21/1 . One of these is an article by Trudie Chalder -https://www.rcpjournals.org/content/clinmedicine/21/1/13 in which she and her co-author Mujtaba Husain reference Nimnuan et al 2001 as evidence that MUS prevalence in some secondary clinics can be greater than the prevalence rate (of up to 20% of presentations) that they supply for primary care.
All that can really be said about the Nimnuan et al study is that the doctors involved (who perhaps tended to be more junior than usual) weren’t at all good at diagnosing correctly in the first instance – neither for ‘medically explained’ nor for ‘medically unexplained’ conditions, which makes the case for patients being retained in physical healthcare clinics and being assessed and investigated more thoroughly, rather than those with supposed ‘MUS’ being quickly dispatched to psychiatric or psychological services to save money. But that ‘Clinical Medicine’ journal issue includes a paper on functional cardiac symptoms -https://www.rcpjournals.org/content/clinmedicine/21/1/37 – and the authors cite Nimnuan et al 2001 for its high MUS prevalence rates. They don’t mention that the misdiagnosis rate for cardiology in the Nimnuan et al study was 31.7 % (as supplied in Table 4 of Nimnuan et al 2000) or 38.2% when expressed as the percentage of those initially given a MUS diagnosis who were found to have been misdiagnosed with MUS (see ‘Untangling the MUS Web’ by ‘Goodelf’ -https://opposingmega.wordpress.com/2020/05/01/untangling-the-mus-web/. )
It seems that 38.2% of cardiology patients initially diagnosed with MUS were misdiagnosed, but this somehow doesn’t matter?!
NB It might not matter quite so much if patients are to be treated fairly with subsequent thorough assessment and investigation of their symptoms, but BPS proponents are actively promoting the curtailment of such care and the rapid expulsion of ‘MUS’ patients from both primary and secondary physical healthcare to cheap psychological services instead in order to save the healthcare services lots of money. And if we think the situation is bad now then it will be far worse when covid has died down and healthcare services count the cost of the pandemic.
To be fair, perhaps the authors of the article on cardiac symptoms had never read the Nimnuan et al 2000 study, but there is every opportunity now for them to correct their paper and tell their readers the truth. Will they? I doubt it somehow. There is little excuse for Trudie Chalder though – we know that she’s read the Nimnuan et al 2000 paper, having cited it herself previously. Couldn’t she have warned her work colleague and co-author Mujtaba Husain about it?
Will these people ever be held to account for promoting a model that results in patients being gaslighted and ignored and denied the physical healthcare that they need?
“The findings of the cited study could easily have been flipped around and rephrased to indicate that “general somatic symptoms, particularly fatigue, followed by gastrointestinal symptoms, have been found to predict covid-19 related anxiety.” When data are cross-sectional, both statements would be true.”
Exactly. But taking a step back from that, the root problem is the total inability of anyone anywhere being able to prove that ‘psychosomatic disease’ exists at all except in the minds of those who promote it. It’s the old story (but one which the BPS seem unable/ unwilling to concede) which we have seen time and again throughout history, where diseases considered ‘of the mind’ are later proved to be wholly biomedical. The reverse is never true… why does this paradigm have such a hold on lives throughout the world when its model can never be proved to exist at all? I know we know why…that it saves Governments shed loads of dosh etc and provides cushy sinecures for the BPS, not to mention their lobbied-for Honours etc.
But the reality is that these people are no better equipped at providing health protocols than the average shaman. Lots of Long Covid sufferers might get to realise this too. Many of them will be better placed than people with ME who have often lived decades with a disease and are rendered almost useless, by dint of their disease, when it comes to fighting the BPS model. The BPS might rue this particular landgrab. It could hasten their demise. I hope Long Covid sufferers are keeping tabs on your blogs David, they provide a very useful, and easy to grasp, base from which LC sufferers can get up to speed on the dastardly dealings of the BPS… dealings with which the ME community is sadly au fait.
There’s also “COVID‐19‐related anxiety predicts somatic symptoms in the UK population” in the British a journal of Health psychogenic.
I agree with Dr. Tuller that it is not at all clear which direction the causation runs in.
Compare, for example, the symptom of having a raised temperature. Prior to this pandemic, most people probably wouldn’t be too troubled by having a mild temperature. Noe of course it might (or might not) be a symptom of covid19, and so until tested you can’t go into work or maybe even leave the house (depending on your current local restrictions..). A reasonable hypothesis: there is some rate of raised temperature for non-COVID 19 reasons, and during a pandemic the conditional probabilities are such that you’re (rationally) more likely to be concerned about it,
So, similarly, there may be some existing rate of gastrointestinal symptoms, which would ordinarily be non-concerning, but maybe now the people who get them are all “omg I might have covid19”. (Even though these are not the main symptoms associated with covid19).
One of the issues I have with CBT is the way it tends to assume that nothing is actually dangerous.
Suppose – hypothetically – that being concerned about covid19 was shown to lead to psychosomatic gastrointestinal symptoms. And that we could cure those psychosomatic symptoms by just telling people to ignore all the current social distancing rules, quarantining etc. …. with the noticeable treatment harm that a lot more people would actually get covid19. It is not at all clear that the benefit of curing the psychosomatic symptoms would be worth the treatment harm.
(This argument is particularly clear in the case of covid19, but also applies to other CBT-able situations. E.g. some people diagnosed with IBS actually have undiagnosed bowel cancer. Telling IBS patients to ignore their symptoms presumably has the downside that some more of them will die because their tumour becomes inoperable before they get a cancer diagnosis.)
Some discussion of cost versus benefit and the relative probabilities might be in order. One of my issues with the usual account of cbt is that it completely ignores the cost of false negatives.
Several years ago the routine lab tests showed a decrease in kidney function. The nurse called to tell me. I asked her what I was supposed to do. She said I should drink more water. That’s it. No follow up. And of course no help at all for devastating ME symptoms, except Imitrex for migraines.
In late 2019 the annual tests showed another decrease in kidney function. And once again no followup. The physician wrote his report to suggest that he doubts my claim of sufficient hydration, with the implication that kidney failure is the patient’s fault.
Now that there is blood in the urine he has decided maybe it is not my (alleged) failure to drink water, and he ordered a CT scan. Well guess what. Not only is there extensive bladder cancer but the left kidney is destroyed because cancer has blocked the ureter. Nice goin’, Doc.
This is a death sentence for me. The urologist wants to remove the bladder and administer the usual toxic cancer drugs. There is no way I can tolerate that sort of treatment. In addition, he expects me to move 300 miles so the “experts” in the big city can work me over.
Thinking about all this, I realized that once I left my home of 40 years, I would never be back; that idea greatly simplified the decision to stay home and die. Of course this is not acceptable to the doctors, despite giving lip service to “we only give advice (but you better follow it)”.
At the moment there is no plan at all; the urologist was supposed to call yesterday but it didn’t happen. He wanted me to have an office appointment so he could make another sales pitch, which I declined because travel, so he will probably never call. Maybe I am just paranoid, or maybe doctors really do engage in passive-aggressive behavior against troublemaker patients.
I have now moved from the very-low-status ME to the disease at the pinnacle of the disease hierarchy (and profitability). But even with this new status it appears I will once again be abandoned and abused by the medical machine.
After nearly twenty years of illness, a permanent rest will be welcome, except I need to try to secure my modest estate from the Medicaid claw back rules. After surviving lawsuits, bankruptcy, extreme poverty, etc. I find out that Medicaid wants to recover the money they paid to doctors who didn’t help anybody except themselves.
The US medical machine is explicitly designed to squeeze every last drop before sending our corpses to an overpriced funeral home. But I am determined to make a good-sized donation to the American ME Society, who makes direct grants to patients. Wish me luck.
“This argument is particularly clear in the case of covid19, but also applies to other CBT-able situations. E.g. some people diagnosed with IBS actually have undiagnosed bowel cancer. Telling IBS patients to ignore their symptoms presumably has the downside that some more of them will die because their tumour becomes inoperable before they get a cancer diagnosis.)”
I think you’re absolutely right about this SusanC, but the situation may be even more dire. I think an association exists between IBS and bowel cancer because IBS is often a paraneoplastic illness and the neoplasm in question is bowel tissue. In other words, an IBS patient’s immune system could be and often is attacking their bowel because the immune system has detected cancerous or precancerous tissue there and is attacking that tissue with its usual weapons of antibodies, neutrophils, macrophages, T cells and etc, causing severe inflammation which results in intense distress — but also may succeed in restraining or eliminating the cancer!
However, if biopsychosocial techniques actually do work to reduce the distress of IBS, they could and and very probably would by reducing the inflammation causing the distress, and that could and almost certainly would allow some cancers to overcome he immune system and produce clinical cases of cancer.
In short, insofar as biopsychosocial techniques work as advertised, they are likely to give you cancer, and we should therefore be grateful that they are mostly just nonsense.
Jimells, I’m so sorry to hear that this has happened to you. It sounds like an appalling case of discrimination and neglect to me. I wish you the best of luck with all that you now have to face and tackle on top of everything that you’ve had to endure for the last twenty years or so.
CT, thank you for your kind words. One wonders how much of my situation is due to discrimination promoted by the psychobabblers, as opposed to general incompetence.
I wrote medical billing software 20 years ago, so I know a bit about how the medical machine operates from the administrative side as well as the patient’s perspective. Failure to follow up and generally poor management is widespread in the US. If the rest of the economy operated as poorly as the medical machine, we would all be hungry and cold.
The failure to followup in my case seems rather blatant, and it is particularly galling since every year they try to sell me vaccines and colonoscopy while ignoring my actual illnesses. Looks like cook-book medicine to me: they follow the recipe (sales script?) and ignore everything else.
One irony is that if they had done their job and found the cancer earlier, there would’ve been even more pressure for surgery and toxic drugs, while still ignoring the adverse effects those treatments would have on the ME. And I don’t want to even think about the possibility of being sectioned.
Professor Edward’s evidence to NICE ME/CFS committee: “Peer review problems were highlighted to me with a manuscript of my own. It was recommended that I not mention problems with unblinded trials, not because my critique was wrong but because it would cast doubt on almost all treatment studies in clinical psychology.” https://www.nice.org.uk/guidance/gid-ng10091/documents/supporting-documentation-3. If he’s right then this paper by Chalder is another useless one.
JimElls, I’m so sorry this has happened to you. I have hopeful wishes for you, and as you’re one of my favorite writers on the topic, I hope you will continue commenting on ME as long as you can.
Sue, thank you for your kind words. I will continue to write for as long as I can. And especially thank you to Dr Racaniello for providing a place to post comments.
Thanks for this great blog – greetings from Vienna, Austria. 🙂
A naive amateur question:
Is this attempt to make a clear distinction between biopsychological processes and pathophysiological ones helpful?
Isn’t there research indicating that physiological processes are also able to cause anxiety/depression and vice versa – that psychological issues have measurable effects on the body?
It seems that what humanity needs is interdisciplinary research and a holistic approach. Different disciplines fighting for funding/attention and bitching about each others bad science seems to be part of the problem. Better science is needed… no?