By David Tuller, DrPH
In February, I wrote a post tracking how a core finding from Bermingham et al, a 2010 study, has been misrepresented repeatedly in claims about the costs to the National Health Service of so-called “medically unexplained symptoms.” The misrepresented finding has been cited by proponents of an NHS effort to divert people labeled as having MUS away from specialist medical care and toward psychological interventions. This approach to MUS is part of the expansion of an NHS program called Improving Access to Psychological Therapies.
Putting aside for a moment legitimate concerns about MUS as a clinical construct, it is troubling that untrue information about NHS costs has been widely disseminated and cited in the context of public health policy debates and decision-making on the issue. That’s why I have started pressing some of those involved to correct these mis-citations of Bermingham et al. This task is more challenging than it should be–even when the mistake is indisputable, as it is in these instances.
In Bermingham et al, distinctions between the concepts of MUS and “somatisation” have essentially been erased. The first paragraph of the abstract addresses the prevalence and burden of “medically unexplained symptoms.” By the abstract’s second paragraph, the focus has switched, without explanation or comment, to the economic costs of what it refers to as somatisation. The paper notes that the unexplained symptoms “are thought to represent a somatic manifestation of psychological distress, or abnormal activation of sensory pathways.” This quick elision between MUS and somatisation is unwarranted.
One of the paper’s key findings is that the costs incurred in treating those of working-age in England identified as having MUS—that is, those found to have been somatising–accounted for 10% of what the NHS spent on that demographic group. Yet a series of MUS thought leaders have cited Bermingham et al while declaring something different: that these costs accounted for 10 % of the total NHS budget (or 11%, in one case). The effect of this error is to more than triple the apparent economic impact of MUS reported by Bermingham et al.
In other words, these investigators have misinterpreted a seminal study in their field of expertise while citing inflated numbers that help support their argument. This surprising collective lapse in scientific literacy should raise questions about the credibility of related pronouncements on public health policy initiatives, such as the expansion of IAPT. (It should be noted that the figure from Bermingham et al has been referenced accurately in other instances, including by some who have also mis-cited it.)
In seeking corrections of misstatements of Bermingham et al’s results, I am not endorsing the study’s methodology or calculations. While Bermingham et al has been an influential piece of research, the data have serious limitations that have often been overlooked. Nor am I endorsing the study’s apparent premise that all cases of MUS involve somatisation.
From the perspective of Bermingham et al, MUS is a useful, valid and discrete clinical category. The corollary is that conditions and symptoms currently unexplained by medical science are not just poorly understood at present but are inherently unexplainable in pathophysiological terms and therefore represent the process of somatisation–or at least can appropriately be treated that way for the sake of analysis.
Strict adherence to this approach appears to violate common sense. Throughout history, sickness and death have been attributed to a wide range of unverifiable external and internal phenomena–witchcraft, demonic possession, miasmas, wandering wombs, planetary movements, hypothesized psychological processes (penis envy, etc). Many or most must have sounded reasonable at the time. Yet evidence of organic causation of formerly unexplained or mysterious illnesses has repeatedly emerged to debunk previous theories and certitudes.
Members of our species can obviously suffer from a range of discomforts and pains that elude the current reach of medical care and practice. It is unclear how these lacunae in knowledge across multiple scientific domains can be convincingly invoked as evidence for a distinct and stable object of study called MUS. Do those who hold this view believe we have reached the end of advances and discoveries in the diagnosis and treatment of complex diseases?
For argument’s sake, let’s stipulate that some people might be somatising their “psychological distress,” as Bermingham et al posits. How can it be determined who is somatising and who is suffering from something for which an underlying organic cause might yet be found? And if unexplained suffering is routinely interpreted as somatising based on the absence of a currently proven underlying organic cause, how does that interpretation itself impact the likelihood that possible underlying organic causes will be researched, much less discovered?
Every human sensation, it seems, could be identified as somatisation or an example of MUS in the absence of a currently proven underlying organic cause. Bermingham et al lists dozens of conditions across 19 medical specialties in which, it is claimed, “somatisation plays a part.” The possibility that some of these conditions might in future be fully explained through identifying an underlying organic cause does not seem to have been considered. It is not self-evident that lumping them all together as if they could be assessed and managed as part of a unified category makes sense.
In an interesting finding, most of the costs related to somatisation in Bermingham et al were not attributed to those identified as having somatisation disorder. In the study, a significant majority of those who were somatising were found to have “subthreshold somatisation” instead. Here’s how the paper describes it: “The term ‘subthreshold somatisation’ is used to refer to any somatoform disorder in which symptoms are not sufficiently numerous or diverse to qualify for a diagnosis of somatisation disorder…‘Somatisation disorder’ is used to describe patients who meet full criteria for the disorder.”
Ok, then. Is that clear? Most of those represented as somatisers and included in this study about the costs of somatisation did not actually have the associated disorder. Instead, they were experiencing “subthreshold” levels of somatisation. So whatever somatisation disorder is, most of the information analyzed in Bermingham et al is about something else. Got it.
Under the circumstances, the reported findings in Bermingham et al could be framed another way. According to the data, the cost of treating people of working age identified as having somatisation disorder accounted for less than one billion pounds–between 3-4 % of what the NHS spent on that demographic group. When phrased like that, things sound a bit different.
Why does any of this matter? Under current and developing NHS practice, people who present with complaints of a symptom or symptoms that some general practitioner or other clinician cannot explain in medical or organic terms could be identified as having MUS. Even if, per Bermingham et al, they are experiencing only “subthreshold” levels of somatisation, they could be tagged as prime candidates for psychotherapy under the IAPT program and discouraged from accessing specialist care.
In the UK, GPs are being educated about MUS and encouraged to spot presumed somatisers and curtail extensive searches for medical explanations of their complaints. This approach has been framed by proponents as both a win for public health and an efficient way to manage medical resources. Given the suspect quality of the research I have seen in this domain so far, I have reservations about MUS and somatisation and the various claims being made.
In any event, whatever its merits, Bermingham et al has been routinely cited in research involving MUS costs. And if the findings are to be cited, they should at least be cited accurately. That means if they have not been cited accurately, they must be corrected.
In that spirit, below is my recent letter to Professor Helen Payne at the University of Hertfordshire’s School of Education–with a short follow-up for clarification.
Dear Professor Payne—
On July 1st, I cc-d you on a letter I sent to Professor Carolyn Chew-Graham of Keele University. That letter involved Professor Chew-Graham’s repeated mis-citation of a 2010 study, Bermingham et al, about the costs to the National Health Service of so-called “medically unexplained symptoms.” In the letter, I indicated that I planned to contact other investigators who have made the same mistake.
Bermingham et al reported that the costs of treating working-age people in England diagnosed with MUS accounted for 10% of NHS spending for that age group. Yet in many instances, investigators have cited the study in declaring something different–that these costs accounted for 10% of all NHS spending. This inflated estimate has been referenced in discussions of public health policy, such as the expansion of the NHS program called Improving Access to Psychological Therapies.
By way of introduction, I am a senior fellow in public health and journalism at the Center for Global Public Health at the University of California, Berkeley. For the last few years, I have examined and critiqued some of the research in the ME/CFS field, including the PACE trial. I have chronicled my findings in more than 150 posts and articles on Virology Blog, a widely read science site hosted by Professor Vincent Racaniello, a microbiologist at Columbia University.
More recently, I have been reviewing some of the literature on MUS as well as on the expansion of the IAPT program to those diagnosed with ME/CFS, irritable bowel syndrome, and other chronic and complex illnesses. As with the studies on ME/CFS, investigators seem to be making some unwarranted claims. The frequent mis-citation of Bermingham et al is a key example.
I first alerted Professor Chew-Graham to this salient error in a letter I sent her in January. Since I did not receive a response, I appealed directly to the British Journal of General Practice, seeking a correction in a 2017 editorial for which she was the lead author. That correction has finally been posted, accompanied by an appropriately prominent note. In this month’s letter to Professor Chew-Graham, I urged her to follow up by also correcting an article about MUS that she wrote the same year for a Keele University blog.
A similar mis-citation of Bermingham et al has appeared as well in two of your own publications. A 2017 paper in Health Research Policy and Systems included the following: “These conditions cost £18 billion in 2008 according to Bermingham et al, and £3.1 billion of this to the NHS, which is approximately 10% of the NHS budget.” This statement is not an accurate description of Birmingham et al and needs to be corrected.
In a paper the following year in Frontiers in Psychology, you and a co-author wrote: “At approximately £11.64 billion it cost around 10% of the whole English National Health Service (NHS) budget in 2015/16.” Although the previous sentence cites Bermingham et al, no reference is specifically provided for the estimate of £11.64 billion in costs. Rather, this figure appears to have been back-calculated by taking 10% of that year’s total NHS budget, not the amount spent on the working-age population. In any event, the statement needs to be corrected.
Thank you for your quick attention to this matter. The development of sound public health policy depends on the integrity and robustness of the published literature. That is why this indisputably wrong but potentially influential citation of Bermingham et al needs to be corrected promptly in the various venues in which it has appeared.
Given the significance of the issue, I am cc-ing several people on this e-mail. They are: editors at Health Research Policy and Systems and Frontiers in Psychology, the two journals in question; Professor Chew-Graham and others who have made the same mistake; Sarah Bermingham, the lead author of Bermingham et al; four physicians involved in the effort by the National Institute for Health and Care Excellence to create new ME/CFS guidelines, as well as two patient representatives on the NICE committee; Carol Monaghan MP, who has expressed concern about the poor quality of ME/CFS research; and Professor Racaniello, who hosts Virology Blog. (I also plan to post the letter.)
David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley
As soon as I posted the letter on Facebook, a reader noted a point of confusion about Professor Chew-Graham’s misstatements. I re-read what I’d written about that. It wasn’t explicitly wrong. But it wasn’t exactly right, either. Since I was trying to hold others to account, I decided I needed to clarify the issue for Professor Payne and the other recipients. Here’s the follow-up I sent:
Dear Professor Payne–
I would like to clarify one point in the letter I sent earlier. The phrasing suggested that Professor Chew-Graham had twice misrepresented Bermingham et al to mean that costs for MUS among the working-age population accounted for 10 % of total NHS spending. This is not the case. In fact, her editorial in the British Journal of General Practice, since corrected, initially stated that these costs accounted for 11% of total NHS spending, not 10% of total NHS spending.
I should have made that point explicitly clear. I apologize for not having done so.
13 responses to “Some Thoughts on MUS and Bermingham; My Letter to Professor Payne”
None of this dreck can be approached as research, because it’s marketing. Claims of treatment success are straight-up fraud. I hate to sound critical or negative, but I don’t think that Wack-A-Mole, one bad paper at a time, is going to put these fraudsters out of business.
That will take a proper legal investigation, criminal or civil, either one could do the job.
The theoretical framework and research methodology of MUS, somatisation, CBT/GET and so on is incoherent. Even a superficial analysis reveals a large number of errors and contradictions and untested assumptions. I suspect that this is because it was hastily made up to create a market for psychotherapy.
This arbitrary reinterpretation of ‘medically unexplained symptoms’ as a pseudo scientific psychiatric diagnosis called ‘Medically Unexplained Symptoms/MUS’, a somatising psychological condition, is profoundly worrying.
It seems to be motivated by ideological and economic reasons as well as the psychological discomfort of doctors unable to accept their current lack of knowledge.
This catch all label includes includes symptoms that have not yet been diagnosed and syndromes such as ME/CFS that have identified biomedical anomalies but whose pathology is not yet fully understood.
We have no idea what percentage, if any, of those with ‘medically unexplained symptoms’ actually have a somatising psychological condition. Such a diagnosis should be approached with caution as there are no fool proof ways of distinguishing between a clinician’s current ignorance and a patient’s somatisation.
The research attempting to quantify MUS tends to focus on primary care, but when in the treatment pathway you look will enormously impact on the level of medically unexplained symptoms. The whole purpose of visiting your GP is to obtain an explanation for your symptoms, so at the instance of walking into the surgery 100% of new symptoms are by definition ‘medically unexplained symptoms’ and it can vary from minutes to weeks to months or even decades before a final diagnosis is arrived at.
Those of us interested in ME and various other contested syndromes will be very aware that some complex diagnosis, including rare but quite straightforward genetic conditions and autoimmune conditions go undiagnosed for an unacceptably long period of time. Even the relative common ME/CFS can take for some taken years or even decades to be diagnosed. Regardless of one’s beliefs about underlying causation, such a diagnosis should be relatively straightforward. The stereotype MUS patient is an anxious middle aged woman, but it is no coincidence that many of the contested conditions effect predominantly women.
At what time in the care pathway is it reasonable to go from ‘medically unexplained symptoms’ to a psychiatric diagnosis of ‘Medically Unexplained Symptoms’? Does anyone keep records of the level of misdiagnosis?
For example a personal friend went to her GP with severe chronic chest pain following heart surgery, whenever she bent forward she experienced severe pain. She had a complex medical history, chronic fatigue and some distress. The doctors repeatedly sought to reassure her and when this failed she was sent for psychotherapy. So at some point she went from having a ‘medically unexplained symptom’ to having a form of a MUS psychiatric diagnosis without any actual medical investigation. Fortunately she eventually found a doctor willing to to have her X-rayed. The surgery to remove the eleven inch surgical tool left in her thorax was relatively straightforward, and because she had ignored medical advice to push through the pain there was no permanent damage to her vital organs. So she went through a process of having a ‘medically unexplained symptom’ to being misdiagnosed as having a somatising condition to being correctly diagnosed and treated over the period of two years.
I repeat does any one record the levels of MUS misdiagnosis? Given one rationale given for the MUS diagnostic category is to save money, and further some argue that medical assessment reinforces a patient’s false beliefs, more people are likely to be denied access to appropriate treatment. People with biomedical conditions are likely to be mistreated and the psychiatric services required by anyone with a genuine somatising condition are likely to be overwhelmed by those that GPs do not know what to do with.
( jimells – I’d have thought that a proper investigation is more likely if poor academic standards are flagged up across the BPS field? Isn’t that what David has been doing with what you call his ‘Wack-a-Mole’ approach? When so many so-called experts in the BPS field appear to have failed so ‘epically’ on this one MUS cost issue, then IMO they do need calling out. At what academic level are they operating? So how would you call them out if not one at a time when each case is different? Detail IS important. Perhaps you would prefer that the academic literature stays uncorrected? Or would you rather David didn’t bother to tell us what he’s doing to expose these people’s mistakes?
But this isn’t just about academic standards, it’s also about personal ethics. We may see a pattern of behaviour emerge of individual ‘BPS’ proponents failing to correct their mistakes and carrying on regardless. It would seem that Professor Chew-Graham still hasn’t corrected the mistake on her blog, so can we rely on her other work, such as the METRIC training course for ME/CFS, to be correct? – https://www.virology.ws/2019/01/28/trial-by-error-my-letter-to-professor-chew-graham-about-metric/ . To my mind, it’s bad enough making these basic errors in the first place but failing to correct their mistakes wouldn’t be a good look for BPS proponents, especially when the UK Parliament is concerned about UK research integrity.)
I particularly like this sentence:
“And if unexplained suffering is routinely interpreted as somatising based on the absence of a currently proven underlying organic cause, how does that interpretation itself impact the likelihood that possible underlying organic causes will be researched, much less discovered?”
– because we know only too well the impact of this approach on ME sufferers who have witnessed decades-worth of research funding being wasted on supposed psychological/psychiatric causes and treatments rather than on good biomedical science. This MUS = ‘somatization’ approach must be called out as nonsensical and detrimental to scientific progress. But I’d ask those who think that the ‘MUS’ issue should be ignored/side-lined because ME is not due to somatization – how can you be successful in challenging this approach if you claim that you’re the exception to it? ‘Everyone else can be called somatizers, can fall foul of this ‘MUS’ construct, but not ME sufferers’ ? Hmm.
“Every human sensation, it seems, could be identified as somatisation or an example of MUS in the absence of a currently proven underlying organic cause.”
Considering the BPS cabal have consistently demanded an ‘evidenced based approach’ to researching disease, & ME particularly, I think it’s about time they were held to the same account and prove that ‘somatising’ exists at all. By that I mean using reproducible data based on measurable parameters and not using (and re-citing ad nauseam) the junk-science we’re used to seeing being spewed out ie: that of non blinded arms with subjective questionnaires and zero objective measurements. It’s about time they put all their money where their mouths are and came up with the data. My guess is they won’t be able to do so…given it’s very hard to prove a negative and I, personally, do not believe ‘somatising disease’ exists at all. But of course good science might prove it does, such that I would have to change my mind… I’m not cognitively dissonant about this .. just picky about real science and real data.
More particularly-speaking wrt this blog, I think this has been one of the most important and well presented blogs David has written since first exposing PACE for what it is. He describes the issues of injustice, malfeasance, and sheer lunacy that abound around the MUS construct very well indeed. No one, even the most cognitively challenged ME patient, could fail to understand what is going on here. ‘Said patient’ will also, of course, understand that they are not alone. Using the practices of sleight of hand and indemonstrable diagnoses every UK citizen attempting to access NHS care (and tbh those trying to access private care in the UK are not immune either) is at risk of being shunted down this dark alley. By design the alley has a ‘one way’ sign at its entrance, once you’re ‘in’ you’re not supposed to get ‘out’. Getting free of a powerful fake diagnosis like MUS won’t be easy. MUS is taking our experience of health ‘care’ to extremes beyond that which Huxley could have imagined in his ‘negative utopia’. Crazy, worrying days…
I’m guessing the BPS cabal must be suffering from some degree of psychological distress to be able to conjure such a malevolent creature as MUS out of our physical diseases, tipping ‘somatisation’ on its head so to speak… when will it end?
Peter Trewhitt asked: “does any one record the levels of MUS misdiagnosis?”
I’ve looked into this and, if you’re talking about asking patients if they were misdiagnosed, I believe the answer is “no”. Some MUS literature indicates that the rates of MUS misdiagnosis are low, based on work done in the specialism of neurology by Jon Stone, Alan Carson, Michael Sharpe and their colleagues at Edinburgh University. Indeed, recently Dr Chris Kenedi referenced their work in his presentation on MUS to the RACP Congress in Auckland -https://www.youtube.com/watch?v=uR5HXEoHTaA from 30.20 mins. But this lowish rate doesn’t seem to fit with what we hear/read about misdiagnosis rates of ME and CFS (which most MUS proponents, including Kenedi, include as belonging to the ‘MUS’ group of conditions). Kenedi says that it doesn’t matter if doctors are wrong in the diagnosis because they’re “not warehousing” patients as ‘functional’. But unfortunately, on a cerebral level, isn’t that exactly what he is doing? Even if the doctor is subsequently watchful of their patient, it DOES matter if the doctor’s view is now that their patient has a ‘functional’ disorder because they will no longer be considering their patient objectively. However, in the UK, people with ‘MUS’ are to an extent being ‘warehoused’ by being shunted off to IAPT and other psychotherapies with the stated aim that they will spend less time seeing their doctors and being investigated. We need to know the rate/s of misdiagnosis for these patients and the length of the delays to correct diagnosis. IAPT seems to record an awful lot, but, as far as I’m aware, it doesn’t record that.
If they can’t get the headline figure right, and the RCGP correction now proves that, what credibility do they have for anything else they say. MUS/IAPT is all about the savings not about improving things for patients. On the face of it this could be seen as just David being pedantic about one number. But this correction seriously undermines the credibility of the proponents of MUS.
“Ok, then. Is that clear? Most of those represented as somatisers and included in this study about the costs of somatisation did not actually have the associated disorder. Instead, they were experiencing “subthreshold” levels of somatisation. So whatever somatisation disorder is, most of the information analyzed in Bermingham et al is about something else. Got it.”
And what’s beneath the turtle holding the world? Why, it’s another turtle, obviously. A sub-turtle, if you will.
And what’s beneath the sub-turtle beneath the turtle holding the world? Have you been paying attention? How could it not be another turtle? You may not be able to see it and we can’t describe it but trust us, it’s definitely another turtle.
And what’s beneath the tur…
I very much appreciate Dr Tuller’s work. He has established a large and growing public record that plainly shows the continuing patterns and practices that add up to massive harm to patients.
My question is, who will now pick up Thor’s Hammer and hammer out some justice in a court of law?
Excellent, painstaking work. Thanks David. The risk of equating unexplained with unexplainable makes MUS a very risky concept to explore in healthcare and particularly in public health literature. It’s great to have someone monitoring these misinterpretations and making sure that readers are alerted to them with suitably prominent corrections.
Recognising how poor provision of psychological services is in the UK, it is vital that ‘Improving Access’, should be directed at improving access for those who need / will benefit from ‘Psychological Therapies’, rather than being wasted on people who will gain little or no benefit – and potentially will be harmed by being convinced to doubt their own (valid) perceptions and experience.
With this in mind, I like Peter Trewhitt’s questions about:
At what time in the care pathway is it reasonable to go from ‘medically unexplained symptoms’ to a psychiatric diagnosis of ‘Medically Unexplained Symptoms’? Does anyone keep records of the level of misdiagnosis?
I repeat does any one record the levels of MUS misdiagnosis?
There’s a research study crying out for an aspiring PhD student!
This arbitrary inclusion of ‘sub-threshold’ for diagnosis, patients, in that diagnosis nevertheless, looks like basically the same dodge that, for favourite theories, writes of ‘small positive effects, below the level of significance’, by which theories are kept alive when the results actually show they are wrong. How many times have we all seen wording like that, in supposedly scientific articles and papers? 🙁
Incidentally, if they make ‘MUS’ a disease construct in itself, then the ‘U’ is cancelled out, so it will become ‘medical symptoms’, and they can then claim to cure *everybody* through IAPT! 😮 😮
Steve Hawkins said:
“Incidentally, if they make ‘MUS’ a disease construct in itself, then the ‘U’ is cancelled out, so it will become ‘medical symptoms’, and they can then claim to cure *everybody* through IAPT! ”
That appears to be the thinking in this RCPsych piece on MUS -(https://www.rcpsych.ac.uk/mental-health/problems-disorders/medically-unexplained-symptoms) – where treatments listed are antidepressants and talking therapies including CBT, (the predominant treatment in IAPT).
Mental health conditions require precision in diagnosis and treatment, which have been thrown out when the DSM gave up ‘etiology’ in favour of ‘list of symptoms’, sometime in the last century. More recently, in the face of the fact that ME/CFS patients mostly lack any narrative that might lead up to any mental health issues, let alone ‘somatisation’, which could cause the sudden and complete incapacity experienced by previously healthy and very active individuals with acute onset
ME/CFS, they have baldly declared that this proves, not that ME/CFS is not a mental health problem, but that you can have a mental health problem without a narrative that might make sense of it! Now there’s scientific thinking for you…..