Usually I ignore the accompanying pictures when I am reading a newspaper article about health. Just recently however, I have noticed something about the pictures that accompany articles about Long COVID.
Here’s a typical example – a picture of somebody, and it’s nearly always a young woman, reclining on a sofa looking exhausted. Of course we don’t need a photo to help us understand the idea of being exhausted, in the way that we might want an illustration for an article about recent floods or trouble at a street demonstration. So I took to wondering what was going on.
The use of such pictures may represent no more than a desire to break up blocks of text. But there are a couple of features that drew me to thinking of how similar images have been used to convey something about other conditions.
First, here’s a rather typical image from an article about the 19th Century malady neurasthenia: a woman reclines and does not look, if truth be told, especially discomforted by her experience.
From a different era and with another typical feature (hand on forehead) I didn’t have to look far to find this illustration (left) from an article about premenstrual syndrome.
And just to counter the idea that these things are entirely gendered here’s a picture (below) with another typical feature – it’s the back of the hand on the forehead – from an article about man flu’.
Perhaps what I’m seeing is no more than a lazy use of stock images but regardless of motive it occurs to me that there’s more to be said. The visual rhetoric hints at connections that the written text may not – between Long COVID and a group of conditions that have over the years shared some degree of being dismissed, of dubious provenance and melodramatic in presentation. And by implication, faintly ridiculous.
I don’t think this representation of illness does any favours to the discussion about the nature of Long COVID – not just to the question of possible underlying pathophysiology but also to the question of whether some cases are psychosomatic (functional) in part or whole.
My solution would be twofold: time to drop the use of the term Long COVID for the trouble it causes by bundling together so many disparate conditions. And when writing about the sequelae of COVID infection it’s time to drop the use of pictures of tired people resting, hand-on-forehead, on the sofa.
How common is Long Covid? Top of the range, with estimates of nearly 40% of people who’ve had Covid still being symptomatic 12 weeks later, come the REACT-2 study and a recently-published analysis from a US database. In the basement come estimates of 0% from a follow up study of children in Melbourne who had recovered from mild or asymptomatic infection, 2.3% at 12 weeks (the Zoe survey), 4% from a study of schoolchildren in Zurich, and 5% for symptoms at 12-16 weeks from a recent ONS survey. And other estimates in between…
Why is there so much variation? There are the usual suspects – results may be influenced by differences in the samples in terms of age, gender, BMI, vaccination status and so on. Many of the symptoms reported are non-specific (such as fatigue, aches and pains, difficulties with concentration) and endorsement is likely to depend upon exactly how they are asked about and whether an attribution to Covid infection is required. Response rates varied greatly – only 13% in a substantial UCL UCL study of young people and 20% in an ONS study of school children. Some attempt to adjust is possible but response bias and confounding can’t be entirely discounted.
Maybe there’s an issue of reporting threshold – the higher estimates coming from counting relatively minor experiences while the lower estimates count only more severe symptoms. Certainly there seems to be an inverse relationship between number of symptoms and prevalence, but severity (intensity, intrusiveness) is harder to gauge from readily available reports. An ONS survey from earlier this year suggested that only about 1 in 10 respondents was limited a lot by their experiences. An intriguing finding from a study of NHS general practice records suggests that GPs are recording very few cases by comparison with those reported from research surveys – in fact about 100th of the numbers, with a quarter of GPs using NHS codes for Long Covid to describe no cases at all in the study period. The headline of the Guardian’s report of the study this article was amended after publication. An earlier version said that GPs in England were “failing to recognise thousands of long Covid cases”. The headline was changed to indicate that the research concluded that “long Covid coding in primary care is low compared with early reports of long Covid prevalence”.” An acknowledgement that at least one possible explanation is that GPs are applying a clinical-severity filter not recognized by researchers.
Another way to ask about the significance of “Long Covid” symptoms is to consider the prevalence of the same sort of symptoms in the general population. For example persistent fatigue is reported by between 10 and 20% of the general population and something like 50% of people with an identified physical disorder. Not many Long Covid studies collect data from comparison groups, but one ONS survey suggested 3.4% of non-Covid respondents had the same symptoms as the Covid+ respondents and the UCL study found a figure of 16%. In both studies the Covid respondents had more symptoms than the non-Covid respondents, but between-study differences raise again the question of why so much variation – no doubt it’s down to sampling, how the questions were asked, and response rates.
So … what is the value, and what is the likely outcome, of collecting not-very-accurate information on underspecified populations of people who have had a Covid infection and who for the most part have non-specific symptoms that are common in the general population? It may be that the result will be a better understanding of the nature of longer-term problems attributable (or attributed) to Covid infection, but it isn’t clear that these surveys are the most efficient way of getting there. And there are potential pitfalls – Long Covid manifestly isn’t a single condition and it is difficult not to see, in the current approach to researching it, the process that Ian Hacking called Making Up People – the bringing into being of a new category of people with what may turn out to be a transient illness (transient as a medical category that is, not for the individual) – in ways that are not beneficial to anybody concerned.
A start would surely be to stop using the term Long Covid. It’s unlikely we’ll convince the media or pressure groups to drop it, but a move in the right direction would be if researchers and clinicians started using more specific terminology to describe exactly what it is they are studying and why.
There’s more to the debate than disagreement about research findings: prejudice against psychological diagnoses and treatments is also a factor
NICE’s decision to defer publication of its guidance on ME/CFS is welcome, allowing as it does time for reflection about what is going wrong that prevents consensus on the management of this group of conditions.
Actually, just a read through the draft (consultation) guidance provides some clues. It reads less like a dispassionate review of the evidence and more like a one-sided position statement from the ME Association. There is talk about listening to and believing patients, about energy envelopes, and criticism of trials that use “subjective” outcome measures – like self-reported fatigue and quality of life. What exactly these ideas mean isn’t always made clear. Disbelief isn’t likely to be about somebody being ill (symptomatic with functional impairment) but more about that illness being caused by a yet-to-be-identified physical pathophysiology. The energy envelope is an interesting term that I have not come across in this context (as opposed to engineering or acoustics) except when used by people who dislike the idea of activity pacing, but its physiological (“objective”) basis is as far as I know undefined. Treatments that “only” change symptoms are described as non-curative but then so are stroke rehabilitation, paracetamol and hip replacement.
What is being played out in these guidelines is a long-standing opposition to (sometimes expressed as hostility, anger or aggression) treatments such as CBT and GET. What is that opposition about? The debate is sometimes framed as being about the status of trials’ evidence but I don’t think that explains the emotional tone. I detect in the background a drive to reject these therapies because they suggest there is a large psychological or motivational element to the illness.
We live in a society in which the idea is not widely accepted that physical illness can have predominantly psychological causes or treatments, and of course the personal experience of physical symptoms is so pressing that psychological ideas can just not seem to work as explanations. Beyond that starting point there is something more going on and I think it is an active prejudice against the idea of psychological (and specifically psychosomatic) diagnosis. There are several reasons for such an aversion. The diagnosis may be misunderstood as meaning that an illness is imagined or even deliberately feigned. No doubt this is also part of the “not believed” complaint. On the other hand it is assumed that if the diagnosis is accurate, the person so diagnosed must be really odd. This idea has its roots, I think, in the history of hysteria and its conflation of the hysterical illness with the hysterical personality. And of course there is a threat inherent in the idea that somebody can be so lacking self-awareness that their body generates an illness in a mysterious way that is outside their control.
Is prejudice too strong a word? I don’t think so: it explains the animus in the reaction to psychological research and practice in the field, which clearly reflects more than disagreement about the interpretation of trial results. And it surfaces even in some of the milder critical responses to NICE’s decision, such as use of the word “relegated” to describe people offered psychological diagnosis or input, with its implications of inferiority and failure.
How can professionals with an interest respond? Of course there is a continuing need to engage with constructive critical appraisal of the research literature, including discussion of the use of so-called PROMs (patient-reported outcome measures) in applied health research. In addition there is a need to explore new ways to discuss attitudes to psychological causes and treatment for functional or psychosomatic illnesses, tackling the idea that these are somehow disreputable or demeaning approaches.
This last question is sensitive because of the anger and resistance it can provoke in some quarters. My own sense is that the result of this sensitivity is some professional foot-shuffling. Too much is made of findings that many functional states are not preceded by severely threatening or traumatic life experiences; psychotherapy is discussed at times as if it is synonymous with CBT which in this context functions largely as an adjunct to rehabilitation rather than as a way of exploring more widely into the psychosocial context of illness development and maintenance; a welcome interest in the physiological mediators of symptom production is unnecessarily and incorrectly accompanied by claims that such research heralds the end of dualism (implication, using a psychological vocabulary is so passé…).
Time will tell, but my own prediction is that for these reasons the impasse will not be resolved merely by a renewed critical appraisal of the literature. Maybe a “form of words” will be found, but a more useful conclusion would be an acceptance that psychological treatments are important because psychological disorders are important – real, potentially serious, treatable and not inferior to physical diseases.
Since early on in the COVID pandemic there have been expressions of concern about its impact on mental health and, at least as reported in the mainstream media, those concerns have been couched in frankly melodramatic terms. In May 2020 the then president of the Royal College of Psychiatrists expressed fears1 that “lockdown is storing up problems which could then lead to a tsunami of referrals.” The (by comparison) rather more muted claim that the pandemic was having a “major impact” on mental health came in the reporting of a questionnaire survey conducted later that summer2. The current president of the Royal College of Psychiatrists, who has echoed his predecessor’s use of the tsunami analogy, attracted headlines towards the end of 2020 by suggesting that the consequences for the nation’s mental health will be the greatest since the second world war3. The doom-laden tone has persisted into this year, with The Prince’s Trust declaring4 that “The pandemic has taken a “devastating toll” on young people’s mental health” and a report from Bradford in West Yorkshire suggesting5 that “The pandemic has had a deep impact on children” who are “a lost tribe in the pandemic”.
There’s a tiresomeness to this sort of coverage, with its implication – familiar to those who regret the stigmatising of mental disorders – that there is something frightening and uncontrollable going on. But melodrama has other more tangible disadvantages.
First is the lost opportunity to conduct, and demonstrate how to conduct, a balanced discussion about the difficulties and uncertainties that attend the interpretation of data. Much of the media coverage consists of anecdotes – the personal interest stories so favoured by journalists – or small-scale interview studies. Data on health service contacts are problematic because of the degree to which disruption caused by the pandemic changes the relation between population prevalence of disorders and attendance rates. So what is, for now, the best evidence probably resides in population surveys.
However, results from self-report symptom questionnaires require more cautious interpretation than they are often given. Self-reported symptoms are mainly markers of distress, and although very high scores can be an indication of mental disorder the likelihood that is so depends upon the context. Two studies that have taken repeat measures suggest that most of the distress created by conditions during lockdown resolves quite quickly 6,7. The major impact headlined in one report2 proved due to a difference between 10% (previously) and 12% (at the time of the survey) in endorsement of a question about thoughts of suicide but did not spell out how often such thoughts are an accompaniment of distress and lead neither to suicide attempts nor to suicide – suicidal thoughts in population surveys are about 1000 times more common than suicides in the same population.
A bias in thinking about attribution arises with this use of language. A few attempts have been made to link Government policy to an increase in mental health problems among the young8, but for the most part no explicit suggestions are made. Instead the resort to analogies with war or natural disaster and talk of unprecedented crisis implicitly leads to foregrounding of the pandemic as the main explanation for mental health problems. To be sure, there are stresses in the current situation but there are also longer-term forces at play9-11. Years of government austerity strategy have done great damage not just to mental health services but to community assets, employment stability and family security – the main resources that constitute resilience for the most vulnerable in society.
Mental health is a vague umbrella term that is used to cover everything from the boredom and frustration that so many of us feel for being unable to see friends or go out socially, to severe mental illness. Not all mental health problems require treatment from the mental health services. Even before the pandemic something like a third of those identified in the Adult Psychiatric Morbidity Survey12 as having depression had not been so diagnosed by a professional. A third of adults referred to the Improving Access to Psychological Therapies (IAPT) service do not attend for the first appointment – voting with their feet 13.
Of course we need better mental health services. We also need to repair the damage done by years of austerity to schools, community resources and the quality of life of the poor and disabled. And the mental health services need to be planning about exactly where their efforts are best placed – blanket statements about mental health do not help with thinking about who needs exactly what sort of assistance, either preventive or therapeutic. These are challenging tasks the public and government support for which isn’t going to be recruited by melodrama rather than reasoned analysis and careful presentation of the facts.
Fancourt D, Steptoe A, Bu F. Trajectories of anxiety and depressive symptoms during enforced isolation due to COVID-19 in England: a longitudinal observational study. The Lancet Psychiatry. 2020 Dec 9.
Shevlin, Mark and Butter, Sarah and McBride, Orla and Murphy, Jamie and Gibson-Miller, Jilly and Hartman, Todd K. and Levita, Liat and Mason, Liam and Martinez, Anton P. and McKay, Ryan and Stocks, Thomas V.A. and Bennett, Kate and Hyland, Philip and Bentall, Richard P., Modelling Changes in Anxiety-Depression and Traumatic Stress During the First Wave of the COVID-19 Pandemic in the UK: Evidence for Population Heterogeneity in Longitudinal Change. Available at SSRN: https://ssrn.com/abstract=3749211 or http://dx.doi.org/10.2139/ssrn.3749211
Townsend, E COVID-19 policies in the UK and consequences for mental health, The Lancet Psychiatry, 2020; 7(2): 1014-1015,
To an impartial reader there was always something odd about Rosenhan’s famous paper “On being sane in insane places”. It didn’t read like a report of high-quality research of the sort you might expect in Science, and the enthusiasm with which it was received (it has been cited >4000 times according to Google Scholar) seemed out of proportion to its form and content as a single author patchily written account of an un-replicated study involving 8 subjects.
Susan Cahalan’s book The Great Pretender goes further along the road of questioning the study, making the case that the whole thing was a fraud. She was unable to find any research records related to the reported results, and when she eventually traced two of the pseudo-patients they confirmed that they had not made the detailed observations reported in the paper and indeed hadn’t been asked to. One of the two was dropped from the final report, perhaps because his experiences were too positive, and yet in the rewritten final paper (now with 8 pseudo-patients) all the other numbers were identical to the earlier draft with 9 pseudo-patients. And most damningly, when the clinical records of Rosenhan’s own admission surfaced they showed that he had lied about what he told the admitting psychiatrist, in fact retailing fairly standard symptoms of schizophrenia.
No doubt the study proved so popular because it suited people to take it at face value. Psychiatry was in a dire state with diagnosis almost meaningless and the abusive nature of inpatient care widely recognized. Calhan quotes Chief Bromden: “It’s the truth even if it didn’t happen”. Rosenhan had provided a stick with which to beat the system. Calahan reports that even Robert Spitzer knew some of the facts – he had apparently seen the notes of Rosenhan’s admitting psychiatrist but kept quiet because he was keen to force through a more standardised approach to diagnosis. Calahan’s conclusion overall: “The messages were worthy; unfortunately the messenger was not”. Although at the same time as apparently approving of the function of the report in highlighting the need for change in psychiatry, she recognizes the problems with the way the paper was used. It formed part of the rationale for an aggressive deinstitutionalisation which has had catastrophic effects on care of the severely mentally ill in the USA, and it helped feed the growth of the DSM behemoth.
The ambivalence of Calahan’s conclusion is at odds with her book’s unequivocal title, and it started me thinking. If fraudulence and integrity exist in science, how shall we know them? My preliminary take on this is that researchers who misrepresent research fall into four categories, of course with blurry boundaries. It isn’t entirely clear that we know what to do about any of them.
The out-and-our fraudsters. Burt, Wakefield, and now Rosenhan are infamous. They just made stuff up. The list of members of this group is long and will grow. Of course we call out individual studies, but what of the individual academics? Is everything they ever researched to be negated? Lance Armstrong’s Tour de France wins are no longer acknowledged, but every other race he won?
The embellishers. Perhaps not everything they wrote is made up, but there is no great clarity about which bits were truth and which bits weren’t. To my mind the most under-acknowledged member of this class is Oliver Sacks. He was coy about it, but clear enough: “I mean, perhaps it’s a case that I seized on certain themes, imaginatively intensified, deepened, and generalized them. But still”. Or again: “I don’t tell lies, though I may invent the truth”.
And yet Sacks has never, to my knowledge, been called a fraud. Why not? Perhaps because some of the content of his cases would be familiar to many clinicians in the right specialties, and therefore everything he wrote clearly wasn’t made up. Even more so than for the out-and-outers, we can’t be entirely sure how much of the output of people in this group is trustworthy, and therefore what we should do about it.
The spin doctors. Here the behaviour is nothing like making up results; it’s not fraud. Most typically it involves secondary research, reviewing and synthesising the findings of others. This is a difficult skill to get right (see my fourth group) but the efforts of the members in this class are so wilfully wide of the mark, their failure to raise uncertainties or to consider biases so glaring, their findings so predictable from their pre-existing position on the question at hand, that you have to question motives rather than competence. These are academics who should know better. During the pandemic, Heneghan’s approach to COVID transmission is one contemporary example. In my own field I place Kindeman’s outrageous claim that there is no more evidence for the efficacy of ECT than there is for that of homeopathy. Here the answer seems to be attempted rebuttal rather than looking the other way, tempting though that is. Not that it’ll influence the people involved, but perhaps it’ll influence their standing in the academic and wider communities.
The academics who produce flawed evidence is a class that includes pretty much all the rest of us. We try but often get things wrong or present results in a biased way. A personal example. Some years ago, I led a programme part of which involved a case-control study exploring whether life stress might precede the onset of stroke. The answer looked like a tentative Yes and we published in a leading stroke journal. Much later I was approached to consider giving expert evidence in a case involving somebody who had suffered a stroke after a shocking event that was apparently a third party’s fault. My study was being cited. An expert for the defence had produced an eight page critique pointing out the flaws in my study and all I could say to the plaintiff’s team was “fair cop”. The main answer here is rigorous peer review and an academic climate that encourages serious adult debate about uncertainty.
This is a muddy field. Lack of rigour merges into recklessness with the facts and that merges into complete disregard for the facts. There are parallels in the wider public discussion about fake news and online media. A tighter regulatory environment may be one answer but is unlikely to be achievable at scale and with sufficient meticulousness. We need therefore to have a better, that is more critical, approach to engaging with academic and related sources. Perhaps critical appraisal skills teaching needs to include skills in appraising authors as well as their outputs…
The coronavirus pandemic has posed some serious challenges for scientists – inherent in the novelty of the infection itself (biology and epidemiology), in the need to explain difficult research to an apprehensive public and in the desire to inform governmental policy without unduly influencing decisions that are in the end political ones. There have been some great successes in rising to the challenge – for example in the development, evaluation and delivery of vaccines supported heavily by NIHR and the NHS and in the fields of infectious disease and genetic epidemiology.
More dismaying has been the way that differences of opinion have been handled. Elements of the press have of course behaved shamefully – what else do we expect – but it has been a real disappointment to see some members of the academic and clinical communities joining in what has been at times more like a childish shouty argument than a serious discussion about a difficult subject.
Against this background, my eye was caught by the release of a document from a group called the Health Advisory and Recovery Team (HART), COVID-19: an overview of the evidence. The trailers on their website were encouraging-
“HART is a group of highly qualified UK doctors, scientists, economists, psychologists and other academic experts…Our core aim is to find the common ground between the Government and groups that are concerned about COVID-19 restrictions. The ambition is to bring all sides together and to widen the debate in order to formulate an exit strategy that benefits everyone in society…Our research has identified a need for public policy to reflect a broader and more balanced approach across a number of key areas…We must now bridge the gaps in policy areas where there is obvious disagreement. We should try to avoid bias and follow the rapidly emerging evidence to guide us. If we listen and communicate clearly and respectfully with each other we can find the common ground”.
I restricted my reading to the area I know most about, the consequences of the pandemic and its management for the psychological wellbeing (mental health) of the population. That is to the chapters on COVID policies and harm to children (actually, including young adults), the psychological impact of the Govts communication style and restrictive measures, and the benefits and harms of wearing masks.
On a (very) superficial glance this looks like a scientific review of the evidence; lots of expert-sounding people have authored sections and there are nearly 300 references cited over 55 pages. A more detailed read gives quite a different picture. One notable section (suggesting that wearing a mask is psychologically harmful) isn’t referenced at all. Newspaper articles are a cited source of evidence and often do no more than recycle anecdotes, and it doesn’t help that there are website links that don’t work.
Where properly conducted research is cited there seems to have been no attempt at systematic identification or reviewing of its findin. Primary research studies are either selectively chosen or selectively reported. Two examples: First, The Prince’s Trust, with a comment on the “devastating impact” of the pandemic, noted that an online survey of theirs found a quarter of young people reporting that they felt unable to cope with what was happening in the pandemic. What was hardly mentioned by the Trust’s press releases (and not at all in the HART report) is that there have been only slight changes in recent years in levels of anxiety (53% in 2018, 55% in 2019, 54% in 2020, 56% in 2021) and depression (38% in 2018 and in 2019, 39% in 2020, 41% in 2021). The same applies to reports of increasing rates of self-harm and thoughts about self-harm: “research shows that suicidal thoughts have increased dramatically” refers to a single study reporting a rise from 8.2% to 9.8%, 12.5% to 14.4% in younger adults. Bizarrely the original study isn’t referenced, but instead a synopsis of it published in a different journal.
This isn’t to say that reports of not feeling able to cope, or of ending your life, are trivial. But there is considerable uncertainty about their interpretation, which doesn’t get an airing here. For example, it isn’t clear what the link is between mental health and feelings of not being able to cope if the one changes sharply but the other doesn’t. The meaning of “suicidal thoughts” can be difficult to interpret without a lot more detail than a questionnaire can provide, and the link between such thoughts and suicidal acts or suicide itself is not straightforward. One thing we do know is that a decline in young people’s mental health and increase in self-harm rates is a decade-long phenomenon, associated with social, educational and vocational inequalities and loss of community resources, not something that can be attributed to the pandemic or its management.
The authors describe this report as a rigorously and widely researched document and we have a pretty good idea what rigour in reviewing evidence should look like. After all, David Sackett and colleagues published Evidence based medicine: what it is and what it isn’t in the BMJ in 1996, the Cochrane Collaboration began its work in 1993, and the Journal of the American Medical Association launched Its series on step-by-step critical appraisal in 1993. Set against such guidance the HART overview doesn’t come anywhere close. The parts I have reviewed are more like personal statements of opinion dressed up as science, with conclusions expressed in over-certain and melodramatic ways – crisis, devastation and catastrophe are part of the vocabulary of journalism, not critical appraisal.
Perhaps all this doesn’t matter too much? The report was written to influence a decision about managing the pandemic in the UK and that decision has now been made.
So as a single incidence it will probably disappear from view, but more generally the bias and tone of pieces like this do need to be challenged. They are bad news for several reasons. Mixing polemics with science just strengthens the arm of critics who want to represent academics as opinion-mongers who dress up their own prejudices in pseudoscience. It oversimplifies the public policy dilemmas posed by the pandemic, which are more complicated than lockdown-don’t lockdown. But perhaps most importantly it muddies the waters so it is hard to see what the real problems are; anybody sensible thinks that the pandemic is likely to have mental health consequences and we need an adult discussion about what they are and what the inevitable trade-offs are when implementing a response to the risks posed by the virus. At the moment the HART Group really isn’t contributing helpfully to that discussion.
In the last 50 years the prison population in the USA has swollen from about 196,000 to nearly 2.5 million – a twelve-fold increase and 30 times the prison population of the UK for a population about five times the size of ours. A further 4+million are paroled or on probation.
Mass incarceration: the real American dream?
This state of affairs is not an accident or an unwished-for unintended consequence of some other aspect of US policy. It has been building for decades and is driven by a complex of inter-related social and political decisions towards action or inaction. Aggressive response to drug-related crime accounts for about 20% of incarcerations. Phenomenal levels of gun ownership increase the likelihood that minor offences like stealing from a shop or getting into a fight turn into armed robbery or (attempted) murder. Privatised incarceration and the associated prison (slave) labour are numerically small but important in lobbying and in their ideological force. Poverty is a barrier to making bail and even more so to getting a competent or interested defence attorney. Important positions in the public legal system are politicised and being tough on crime is an easy electioneering slogan (sound familiar?). Underlying the lot is a poisonous racism that has its roots in slavery and resistance to reconstruction after the Civil War.
His book Just Mercy describes some of the people he and his organisation have represented as they challenge iniquities like sentencing minors to death or to die in prison (life without parole). Winning these battles is an uphill struggle – the USA is the only country in the world to send children as young as 13 to adult prisons and it was only this month that Ohio abolished life-without-parole sentences for children; one of only 24 states to do so. The book should be read by anybody who believes that America is the Land of the Free and a model democracy.
Mental states and coercive states
The chaotic emptying of mental hospitals in the Reagan era pitched thousands of vulnerable adults onto the streets (see eg Decarceration: community treatment and the deviant, Andrew Scull, Polity Press 1984) and exposed them to risk of imprisonment that has never gone away. Stevenson touches on, but does not major on, this aspect of mass incarceration but I was nonetheless struck by a passage in his book which outlines one line used to persuade the justice system towards leniency in their treatment of juveniles. In a book where the arguments are otherwise couched in social, ethical and political terms, comes this explanation for the likelihood of young people becoming involved in crime:
“A rapid and dramatic increase in dopaminergic activity within the socioemotional system around the time of puberty…drives the young adolescent toward increased sensation-seeking and risk taking…This increase in reward-seeking preceded the structural maturation of the cognitive control system.”
Is this how abused and neglected people have to be presented to the US courts to elicit a response other than savagery?
Can Lisa Montgomery have a lasting legacy?
While I was thinking about this (I have just finished Stevenson’s book) the case of Lisa Montgomery made news in the UK. She was one of the victims of Donald Trump’s killing spree as he left office and attracted particular attention because she was female, killing women being seen as especially abhorrent in part I suspect for sentimental reasons, and partly because they are seen more often as damaged victims and less often in the role of (male) heartless psychopath.
Ms Montgomery was convicted of the most dreadful murder – killing a woman who was in advanced pregnancy and undertaking her own Caesarian section to take the baby as hers. Unsurprisingly she was recognized from the beginning to be mentally ill and indeed while awaiting execution she was imprisoned in The Federal Medical Center, Carswell which is a United States federal prison in Fort Worth, Texas for female inmates with special medical and mental health needs.
The basis for a final unsuccessful plea for stay of execution was that she was mentally incompetent, a term pretty much equivalent to lacking mental capacity in the UK. That is, she did not understand in a meaningful way that she was to be executed and why. An additional argument was that she was being denied the opportunity to prove that by being denied access to experts who might provide the necessary evidence to the court.
The relevant evidence was presented by her defence team in a petition for writ of habeas corpus. In addition to outlining a history of gross and persistent physical and sexual abuse throughout her early life, the document provides extensive neurological and psychiatric evidence, including reference to MRI and PET scanning of her brain. The various observations and opinions make a bewildering read, offering a snowstorm of diagnoses include depression, psychotic depression, bipolar disorder, psychosis, delusional cycling psychosis, PTSD, complex PTSD and dissociative disorder. All complicated by evidence of “frontal, parietal and temporal or slash limbic lobe dysfunction”, and impaired motor control, cognitive function, attention, language and cerebellar dysfunction and temporal lobe epilepsy.
It is difficult to find a straightforward account of a mental state examination that would convince a sceptical court of her incapacity. She is described at times as showing “…confused thought processes, disengagement, depersonalization, derealization, identity confusion, memory disturbance, and emotional constriction.” At times she was dishevelled and monosyllabic. At other times she reported hearing her mother saying derogatory things to her and saying that God communicated with her through dot-to-dot pictures.
Even a straightforward question about mental capacity (competence) produces a response of opinion rather than clearly stated fact:
“Based on your knowledge of Mrs. Montgomery’s history as well as the reports of counsel regarding her current symptomology, is Mrs. Montgomery able to form a rational understanding of the State’s rationale for her execution as required by Ford v. Wainwright, 477 U.S.399 (1986)?
In my professional opinion, which I hold to a reasonable degree of psychiatric certainty, Lisa Montgomery is unable to rationally understand the government’s rationale for her execution as required by Ford v. Wainwright, 477 U.S.399 (1986). Mrs. Montgomery’s grasp of reality has always been tenuous: medication and the stable, supportive environment of her confinement over the past decade have allowed her to appear psychologically intact, though her baseline perceptions of reality are always distorted due to her brain impairments and trauma history. Mrs. Montgomery’s attorney’s observations—limited though they are—indicate that Mrs. Montgomery is further disconnected from reality, precluding a “rational understanding” of “the State’s rationale for [her] execution.”
Trying to make sense of all this is complicated by the experts’ tendency to drift into quasi-neurological speculation about the origins of her symptoms:
“Traumatized children experience neurochemical, neuroendocrine and neuroanatomical changes in the brain” (Really? Experience?)
“..her neurobiological response to early stress was such a heavy load of anaesthetising, altering neurochemicals that she now just daily lives in that kind of …operating stance,…”
With regard to cerebellar dysfunction these are the symptoms one sees…distractibility, hyperactivity, impulsivity, disinhibition, not being able to control one’s anxiety, irritability, rumination,…obsessive behaviour and dysphoria”
“… the dysfunction of PTSD is that we understand now that the part of the brain that encodes memory is the hippocampus, the larger system than that but the hippocampus is the main structure. If laying down that memory as the amygdala, the part of the brain we talked about [in] the limbic system, is sending fear. So later the memory of the trauma activates the fear,…”
Piecing all this together, the most likely I could come up with was that Ms Montgomery had three main problems with her mental health, in each case exact diagnosis unclear but not relevant for the plea under consideration:-
A long-standing psychotic disorder characterised by mood swings, hallucinations and delusions;
Emotional and interpersonal problems consequent upon severe sexual, physical and emotional abuse in childhood;
Some degree of cognitive impairment consequent upon brain injury sustained during attacks in childhood;
All these almost certainly exacerbated by the abusive nature of her treatment during incarceration.
In truth the only conclusion I could come to in the end was a feeling of despair that her life depended upon a procedural argument about whether she understood that the state wanted to kill her.
Lessons for the UK?
Like so much about life in the USA, especially in the Trump era one can be horrified by the inhumanity of it all, but it is difficult to see if there are any messages of relevance to our own policy and practice. I think there are at least four lessons, two relating to public policy and two relating to psychiatric practice especially as it is used to explain and respond to social deviance.
First and foremost, we must step back from the current drift towards demonising the poor and marginalised and especially those from minority ethnic groups. The main cause of mass incarceration is illiberal social policy, not individual badness – let’s not go there.
Second, we should avoid imprisonment if at all possible – including imprisonment of those with significant mental illness, those charged with offences but not convicted, and sans papiers suspected of not having legal status as immigrants or asylum-seekers. Privatised prison services are wrong even at a pragmatic level because profiteers are a distorting influence on public policy.
In relation to psychiatric practice we must be endlessly careful that our formulations do not support such demonising by emphasising individual pathology at the expense of social determinants – the diagnosis of personality disorder being a prime example.
Functional imaging is an interesting development in understanding the brain, but it can’t help us with questions about agency and responsibility. Muddling together neurological and psychological explanations runs the risk of neither being delivered adequately. Brain investigation doesn’t make psychological explanation in such cases more credible, it just muddies the waters.
It is difficult to believe any of this made a difference to poor Ms Montgomery’s fate – a spiteful punitive system was determined to have its way – but perhaps we can make the best of a very bad job by asking how her final sorry end might have been avoided.
One dismaying feature of our public debate about responses to the pandemic is the way that some high-profile academics and clinicians have chosen to make their contributions. That is, there’s a big problem not with what they have to say, but how they are saying it. I recognize at least three undesirable communication styles:
Lancet editor Richard Horton has made no bones about his opinions – he describes the UK’s response as “‘the greatest science policy failure of a generation’. But whatever his views, did he need to describe the SAGE committee as “The public relations wing of a government that has failed its people”? Many of the academics on that committee and its working groups are doing the best they can in a fast-moving and unfamiliar world, where they are dealing with a near-impossible set of politicians and their advisers. Under the circumstances the remark by Robin McKie, the reporter sent to cover the puff of Horton’s book about COVID that “Horton can sound strident, even arrogant” seems a little understated.
Horton’s abrasiveness is as nothing compared with Carl Heneghan’s, Professor of Evidence Based Medicine in Oxford, who has said that the government’s scientific advisers “specialise in causing panic and little else”. Insulting people who disagree with you is no way to conduct a debate about research and its interpretation.
Independent SAGE is a minor variant of this adversarialism –it’s not their message I’m bothered about, it’s the mode of its delivery, where the mechanism is not simply to propose different ideas but to establish a forum defined as oppositional.
Melodrama and shroud waving
The current President of the Royal College of Psychiatrists and his predecessor have both used the word tsunami to describe apparent increases in mental health problems during the pandemic. Metaphors are tricky ambiguous things – what is this one supposed to mean? That what’s happening is a highly visible, immediately destructive result of a force of nature? That people with mental health problems represent a threat we should run away from as fast as possible? Actually, it doesn’t seem to mean much more than – there’s a lot of it about and we ought to be planning a response.
I’d much rather hear exactly what the problem is, how we know, and exactly what the proposed solution is. By which I don’t mean statements like Professor Neil Ferguson’s flamboyant claim that 20,000 people died because we started the first lockdown a week late. Exact perhaps, with an implicit message about a proposed solution – do what I tell you next time – but rather short on the robustness of the “how we know” element (see later in this piece).
Writing in the journal Lancet Psychiatry in November this year. Psychologist Professor Ellen Townsend says: “…UK residents have all been punished by new limits to the number of people socialising together, and have been warned that further restrictions could be imposed unless their supposedly reckless social behaviour improves.” Social media have more of this sort of thing – mandated mask-wearing as an abuse of human rights for example. The rhetoric conflates two ideas – it is perfectly possible for something to be punishing (such as a physical training regime or schedule of book signing events) without it being administered as a punishment.
Being economical with the truth.
Since its use by cabinet secretary Robert Armstrong during the Spycatcher hearings “economical with the truth” has been taken to mean “lying” whereas its wider meaning is (as the words suggest) something like – “being strategic about the degree to which truths are revealed.”
REACT-1 is a major study in the UK’s epidemiology of the COVID, and especially during the early months the media pounced on its interim results, presented by Neil Ferguson (again). A fine example was the splash a couple of months ago that across the UK R=1.7, with important implications for numbers of cases that might be expected. The withheld truth here is that REACT-1 is one study of one sample, results modelled by one group, and results should be treated with caution until a better estimate can be obtained by pooling or at least comparing results from all available studies. A non-trivial suggestion, given that – certainly at this time – the estimates from REACT-1 modelling were considerably in excess of those from other groups, as revealed during the press conference which presaged the rationale for our second national lockdown.
Writing in the Spectator Carl Heneghan (again) and a colleague presented the results of a Danish trial evaluating the effect of wearing face masks on the likelihood of the wearer contracting a C-19 infection. The original title “Landmark Danish study shows face masks have no significant effect” proved too much for the journal to defend so it became “Landmark Danish study finds no significant effect for face mask wearers.” The article noted that since the study was an RCT it represented “highest quality scientific evidence” but failed (oddly) to mention that the medical journal in which it was published carried an accompanying editorial explaining why they had accepted a paper describing a study with so many flaws. The study’s estimate of effect was so uncertain that the authors noted that they couldn’t rule out a significant effect on mask wearers infection rates – also not mentioned in the Spectator article. And of course the Danish researchers didn’t look at rates of transmission from mask wearers to others. It’s only by leaving out all these facts that the Spectator article can conclude: “And now that we have properly rigorous scientific research we can rely on, the evidence shows that wearing masks in the community does not significantly reduce the rates of infection.”
Does any of this matter?
Some of this has been noted before. For example, writing in The Conversation on 6 October Danny Dorling deprecated the polarised approach to the specific question of lockdown policy. But does it really matter? Is the style of communication noted here just what’s necessary to get debate about science into a media that is largely scientifically-illiterate?
Public communication about the implications of the COVID-19 pandemic has not been good. The government has led the way with inconsistent messages, untrusted presentation of results aimed at boosting their image rather than telling the truth, and a prime minister whose incoherence and vagueness has ceased (if it ever was) to be amusing. In that context this academic behaviour could be seen as doing no more than adding a little to our woes – making it that much harder to guide the public response to risk.
Unfortunately it goes further than that, as misrepresented science is picked up by those lobbying for a particular viewpoint. It suits the libertarian perspective to present modellers as hopeless, biased academics who present misleading findings to politicians and use them to press for draconian interventions – a pitch that is easier to make when bolstered by hints that perhaps over-confident prediction and error-proneness go together.
In the longer-term the damage comes from a dogmatic and attention-seeking style that misrepresents science – when natural uncertainty and healthy debate are portrayed as incompetence and division, there will inevitably be a loss of public confidence in the role of science in policy making.
Much has been made of the re-set in Government that is likely to follow the departure of the poisonous Dominic Cummings. Surely now is the time to re-set the tone of the scientific debate – there are enough thoughtful, articulate academics out there. We need to be pressing for a change in tone by challenging unhelpful communication – not for what is being said but for how. And a research idea: behavioural science hasn’t contributed much to thinking about how we should respond in the pandemic – perhaps research is needed into the impact on behaviour of declining interest in listening to over-confident and over-definite experts, what we might call rhetoric fatigue.
Is covid-19 really a justification for more funding for behavioural science?
Behavioural science (essentially health psychology) came to applied health research with a big promise – that the application of psychological theory would lead to effective interventions for changing important health-related behaviours. In its strongest form the claim was that it was only such theory-based interventions that could be effective.
This promise was taken up enthusiastically by the UK’s main research funders, the MRC and NIHR, so that in recent years it has become a default expectation that all interventions aimed at changing any aspect of the behaviour of patients or populations should be informed by behavioural science. Their committees started to include behavioural scientists along with statisticians and economists – experts whose knowledge was required to make a decision regardless of the specific topic being considered for funding.
There have always been straws in the wind that this idea might have been a tad oversold. Initially it was individual evaluations of theory-based interventions that failed to deliver as expected. A discussion paper in 2013 found no evidence that the approach had generated cost-effective interventions for common behaviour-related health problems like obesity and smoking. And then a major review of the evidence for the so-called theory-effectiveness hypothesis, published in 2019 in the British Journal of Health Psychology, concluded “Theory-based interventions as currently operationalized in systematic reviews were not found to be more effective than non-theory-based-interventions.”
Still, the idea has taken root. As everybody knows, even that great thinker the former Prime Minister David Cameron was convinced. So when the COVID-19 pandemic arrived it was no surprise that one of the SAGE subcommittees, SPI-B, was charged with applying behavioural science to the problems posed by a need for widespread adoption of changes in lifestyle and day-to-day activities. What has come as a surprise is how little we hear about that committee compared with, for example, SPI-M the committee which is concerned with measuring and modelling the progress of the pandemic. A March statement about the role of behavioural science in the coronavirus outbreak consisted mainly of platitudes and an appeal for urgent research, and since then we have heard hardly anything.
In the past week that relative silence has been broken twice. First has been a vehement denial that the idea of behavioural fatigue comes in any way from the behavioural science stable – an intriguing entry into public debate coming just as it’s clear that whole sections of the public are no longer taking any notice of pleas to maintain social distancing or wear face masks.
Second, an article has appeared in this week’s British Medical Journal with the rather belated acknowledgement that “there is almost no relevant evidence on how to promote adherence to behaviours such as distancing from other people and households, hand cleansing, effective use of face coverings, and avoiding touching one’s eyes nose or mouth with contaminated hands.” They might have added “or willingness to collaborate with contact tracing agencies”.
Why has behavioural science ended up in this position? Michie and West suggest that it’s because they haven’t had enough research funding. More to the point are two features inherent to the whole enterprise. Modern health psychology has taken a robustly individualistic approach – privileging psychological characteristics (such as self-efficacy) and psychological processes (such as the forming of action intentions) to the neglect of interpersonal, social and cultural influences on behaviour. And in its incarnation in health, behavioural science has privileged theory as the foundation of its claims to truth, neglecting the sorts of research approaches that would test those theories in real world settings.
Where next? “…we urgently need a major coordinated programme of research to develop and evaluate behavioural, environmental, social and systems interventions that will be effective and viable in tackling the covid-19 and future pandemics.” Well maybe, but it isn’t at all clear, given the history, that “behavioural” should be at the front of that list – except that it makes the acronym snappier. There are other ways to think about the rationale for population-level interventions and we should be conducting a wider search for answers – for example through the social and political sciences and humanities. And adding “political” to the list of interventions would help: any applied health researcher will vouch for the ineffectiveness of the cleverest interventions if they aren’t implemented competently, consistently and comprehensively.
There’s plenty of time to consider the options here. The UK’s pandemic response is in the hands of a government that is influenced by many factors, and high on its list of priorities is not attention to the complexities of science as it applies to population health behaviours. I’m sure they won’t be pressing for answers before Christmas, although they might be looking for people to blame when it’s clear they don’t have those answers…
Another NHS review is trailed in our newspapers – this one apparently aimed at clipping the wings of NHS England and Public Health England. Anyone who knows the first thing about British politics will know that neither Boris Johnson nor Matt Hancock has the ability or the interest to lead a strategic overhaul of our health service, so no doubt the output will be determined to a large extent by the prime minister’s Svengali, Dominic Cummings. What does that tell us about the likely consequences for mental health care in this country?
Cummings likes to pose as an outsider but his scruffy T shirt and stubble is as much an affectation as his employer’s tousled hair and faux-Churchillian gestures. He is a mainstream Tory – privately educated, Oxbridge humanities degree, socially and politically connected. His interest in IT and modelling is a quirk; his real drivers are authoritarianism and disdain for Little People – justified to himself by his self-appraisal as the cleverest man he knows. Cumming’s foot soldiers are the SPADS he employs to run the prime minister’s (and Number 11’s) office. What he seems to be creating sounds a long way from the team of talented weirdos and misfits he famously advertised for and more like just another insiders’ clique.
Cumming’s place man as Number 10’s adviser on Health & Social Care, Life Sciences and Technology is one William Warr, who fits the bill nicely. A standard issue arrogant white man, he has no claim to expertise in health and social care apart from entry-level training in public health and failing to complete his PhD, but he has connections and holds the right political opinions. And those opinions, outlined in (of course) The Daily Telegraph, don’t bode well for our health services – antipathy to an NHS that wastes all its resources treating ill people, overvaluation of the role of tech, tired ideas about smartphone apps and nudge interventions, unthought-through ideas about personalised medicine based upon genetic testing. And Warr seems to have skipped the modules in his MPhil on social determinants of health and on secondary and tertiary prevention.
I’m wondering what all this has to offer people struggling with long-term mental illness, or with the unglamorous admixture of physical and mental disability, poverty and educational under-achievement described so well in Frances Ryan’s book Crippled. The answer is, I’m afraid, nothing. The ability to exercise informed choice about lifestyle is not to be dismissed, but it is overprivileged by those who don’t like the idea of a welfare state. A Zoom chat with a mental health support worker and an offer of gene sequencing is no substitute for good housing, education, a safe environment, proper treatment from a multidisciplinary team of specialists, and a society that values support and participation over competition and acquisition.