I realise that one of my problems in following current debates about same sex spaces, participation in women’s sports and the like is that I don’t know what gender identity means. It is surprisingly hard to get an answer by consulting the sources one might expect to be helpful.
Here for example is the definition of a relevant protected characteristic in the Equality Act 2010 “A person has the protected characteristic of gender reassignment if the person is proposing to undergo, is undergoing or has undergone a process (or part of a process) for the purpose of reassigning the person’s sex by changing physiological or other attributes of sex.” So, if gender reassignment means reassigning the person’s sex then gender and sex mean the same thing, which isn’t how I’d understood it at all.
In an interesting technical paper prepared by statisticians involved with national censuses, the discussion centred on how to keep a long-standing question about sexual identity while allowing people who didn’t like it to opt out and identify instead their gender. At the time of writing ONS was considering a question for the next census, to add to the standard question about sex. In the paper they suggest:
What is your sex? Note: a question about gender will follow later if you are aged 16 or over. Male/Female
Is your gender the same as the sex you were registered at birth? Yes/No, please write in gender Prefer not to say/
Do you consider yourself to be trans? Here trans means your gender is different from the sex you were registered at birth. No/Yes, write in gender/Prefer not to say
This works at a basic level to allow data collection about those who are happy to be described according to their sex at birth and those who aren’t, but it doesn’t help with unpacking current debates about the minority who aren’t, mainly because it allows people to use “gender” to mean whatever they like. However it does signal that sex and gender needn’t mean the same thing.
So…on to two organisations you’d hope had something more substantial to say – The World Health Organisation because of its official status, and the campaigning group Stonewall because if its self-proclaimed status. WHO offers these definitions:
“Gender refers to the characteristics of women, men, girls and boys that are socially constructed. This includes norms, behaviours and roles associated with being a woman, man, girl or boy, as well as relationships with each other. As a social construct, gender varies from society to society and can change over time.
Gender interacts with but is different from sex, which refers to the different biological and physiological characteristics of females, males and intersex persons, such as chromosomes, hormones and reproductive organs.
Gender and sex are related to but different from gender identity. Gender identity refers to a person’s deeply felt, internal and individual experience of gender, which may or may not correspond to the person’s physiology or designated sex at birth.”
And the glossary offered by the campaigning group Stonewall offers these definitions:
Often expressed in terms of masculinity and femininity, gender is largely culturally determined and is assumed from the sex assigned at birth.
A person’s innate sense of their own gender, whether male, female or something else (see non-binary below), which may or may not correspond to the sex assigned at birth.
Both definitions make it clear that sex and gender aren’t the same thing – drawing a fairly conventional distinction between the two. Gender identity is not however awareness of and subscription to one’s gender. The WHO definition implies a psychological characteristic (internal, individual) that is not based just upon reading off one’s social status. The Stonewall definition talks of something innate, implying a built-in feature of mental life and described by the words male/female rather than masculinity/femininity – a nod towards the idea that gender identity might replace sex assigned at birth.
The ”gender” in these definitions of gender identity therefore seems to have a third meaning that is neither a synonym for sex nor a name for a socially constructed role. Something like sex but not defined biologically or gender not defined socially or culturally. Pretty much everything I have looked at online brings me to this position, via circular definitions (your gender identity is how you identify your gender) that use under-specified terms.
I have recently read two books that come to more-or-less the same conclusion – Kathleen Stock’s Material Girls and Helen Joyce’s Trans. I can review them another time but for now I’d simply recommend both – the authors are not disinterested but they are lucid and thoughtful writers and cover a lot of ground in accessible ways. You don’t have to agree with them to be much clearer about what the arguments are.
I was brought up short by one observation in Stock’s book: “It seems clear that, if we want to understand what having a gender identity is like, we shouldn’t ask non-trans people, for many report no particular sense of one.” Frustratingly (and uncharacteristically for Stock) there isn’t a proper reference to support this assertion but it fits my own experience. I’ve got a sex (male) that defines me as a man; I’ve got a gender (conventionally conformist for a white Western European man) that I don’t regard as salient enough to call an identity (my social status is defined by all sorts – social class, education, whiteness, job…) and I can’t think of anything else I could call a gender identity. Stock is dismissive (again uncharacteristically) about this idea that most of the population doesn’t have a gender identity “Maybe, for all we know, there can only ever be misaligned gender identities, relative to sex, and no aligned ones. We shouldn’t let a desire for pleasing symmetry get in the way of actual evidence”.
This strikes me as unsatisfactory. It feels as if it says something about the status of gender identity as an idea if it can’t be defined in a non-circular and specific way. Of course it may be possible to define it better but I can’t find such a definition. And what does it mean about the nature of public debate about these things if it isn’t even acknowledged widely that lots of people have “no clear sense” of a gender identity?
It isn’t obvious that the disputes grounded in (or at least framed by) ideas about gender identity are going to peter out any time soon. Some of the practical decisions (for example about women’s sport) will be made without these ideas ever being adequately formulated. But I do wonder if in the long-run we need to sort them out better, ideally through non-adversarial debate and avoidance of posturing on social media.
An article in the Observer 26 June 2022, “Brain damage claims lead to new row over electroshock treatment”, by Science Editor Robin McKie, is typical of its type.
The first version displayed McKie’s dismaying ignorance of the difference between psychology and psychiatry, describing ECT as “one of the most dramatic treatments employed in modern psychology” and suggesting that its greater use in women is likely to indicate a bias on the part of psychologists. Somebody must have pointed out fairly soon after publication that ECT isn’t a treatment employed in modern psychology because it’s a medical treatment administered under the auspices of psychiatrists and isn’t used at all by psychologists. Indeed, psychologists rarely work in the acute inpatient environments where most people with severe or psychotic depression are treated. Certainly the online version was changed within the week.
The article aired Professor John Read’s well-known views on ECT (which he and almost nobody else refers to as electroshock), claiming that the treatment “…is now the focus of a huge row – which erupted last week – …”. I can find no evidence in the professional or mainstream media to support the existence of this “clash”. In fact no evidence of it is provided in the article, which consists only of Read’s views linked to responses from two senior psychiatrists who were presumably invited to comment on them. It just seems to be made up as the excuse for re-hashing an old story.
There is a strong implication that something new has emerged to fuel this so-called row and indeed it is called a “new row” in the article’s headline. I can’t find any evidence that’s true – there is no mention of recent reports about ECT on the home pages of the Royal College of Psychiatrists, the British Psychological Society or the Care Quality Commission. And a search of Google Scholar reveals no new research to back up the claims made by Read. The one relevant link in the article (trailed as a “recent study”) takes us to a 5 year-old piece in the Guardian highlighting the observation that more women than men are given the treatment.
“We know it causes brain damage” says Read despite there being no consensus that’s true, going on to make the bizarre claim that psychiatrists use ECT because they don’t know the difference between psychotic depression and loneliness or bereavement.
McKie seems not to have got around to asking Read a rather obvious question. If we are going to ban ECT completely then what are we going to do instead? Awaiting spontaneous improvement won’t do for somebody who isn’t eating or drinking; psychological therapy isn’t an option for somebody who can’t sustain a conversation; medication can help with delusions and hallucinations but it is not always effective. I’m guessing he has no idea what sort of depression is actually treated with ECT and didn’t try to find out. Why bother if you can write an article based entirely on recycling what other people say?
The only thing missing was a picture of Jack Nicholson in One Flew Over the Cuckoo’s Nest.
Discussions about the treatment of severe mental illness deserve better journalism than this.
A notable feature of the debate about conversion therapy is the degree to which it borrows from, implicitly or explicitly, the language of evidence-based practice. There are other criteria of course: the value-based judgement that all attempts to change sexual orientation or gender identity are wrong, or the pragmatic argument about unintended consequences that might come from poorly drafted legislation. Nonetheless it remains reasonable to ask how good the research evidence is, evaluated independently of these other arguments, in providing grounds for proposed legislation to make it illegal.
An immediate problem is posed by the broadness of the definition usually employed. For example recent government documents describe conversion therapy as…“techniques intended to change someone’s sexual orientation or gender identity. These techniques can take many forms and commonly range from pseudo-psychological treatments to spiritual counselling”. What this means is that the form, content or style of any intervention being evaluated is often unclear, or that widely differing interventions are conflated in a single intervention category.
Another barrier to interpreting research findings is the lack of attention given by many commentaries to the question of consent. For example the nature of consent is not reported in the UK survey of experience conversion therapy: the results show that more people were offered than received therapy, but not how many had consented to or even actively requested it. In a US study of the experiences of men who have sex with men, 40% of respondents who had experienced therapy said the decision to initiate therapy had been “mostly” or “completely” theirs. One might expect that unwanted or coerced intervention would be more likely to have negative outcomes, but the necessary analyses don’t seem to have been undertaken.
Apart from this (rather obvious) observation that coerced intervention may be the more harmful, there is another complication that arises. People who request therapy may be seeking help with a range of relationship problems that are conflated with their sexual orientation or gender identity, making it difficult to tease out the effect of the “conversion” element. The recent publication of Patricia Highsmith’s journals and diaries provides an example if a rather atypical one.
Reported outcomes typically describe one of two domains: change in sexual orientation or gender identity rarely occurs; negative effects for example on mood and sense of self-worth are commoner than in those who have not received therapy. The evidence is by no means clear that such negative effects are universal and by comparison, benefits have been rarely sought or reported.
One exception is a study of LGBQ individuals affiliated with the Church of Jesus Christ of Latter-day Saints, 720 of whom provided unstructured comments on their experiences in addition to completing structured assessments. The authors note, of these comments “Many found therapy to be a helpful, even life-saving experience. To be able to talk to a knowledgeable professional about a very private concern was salutary. Others reported improved relationships with family or other close associates. Of particular interest was the large number of individuals who reported decreased levels of depression and anxiety and improved feelings of self-worth…For some participants, psychotherapy was clearly unrewarding. As a general rule, however, experiences of harm or iatrogenic distress were much less frequent than reports of benefit.”
Qualitative studies suggest that benefit accrues from aspects of therapy such as discussions about the meaning of the immutable nature of sexual orientation or gender identity or about how to manage any resultant dissonance that arises in the family or religious groups. One interpretation of how attempts at conversion might contribute is that they can act as a sort of behavioural experiment the results of which will depend upon how they are handled. Sensitive discussion can help, while insensitive, coercive or rejecting responses will not. For example, one study of people who had experience of conversion therapy found that those who had subsequently left the religious community for whatever reason were more negative about the effects of therapy than those who had not. One consequence of the definitional problem (see above) is how difficult it is to find much in the research literature that notes whether conversion therapy came with a certain package of other responses or not.
One piece of evidence I have been unable to dig up is what happens next in countries where legislation has already been passed. Has it led to prosecutions? What is the effect on religious communities? In most of the relevant states evangelical Christian groups predominate and it is hard to find anything about other religions. What happens in the madrasa or orthodox Jewish groups? I think we simply don’t know.
In summary – nobody surely would disagree that imposed or coercive attempts to change somebody’s sexual orientation or gender identity are abusive and should not be allowed. However, the proposed UK legislation initially promised to impose a blanket ban on any form of conversion therapy. Even consented or requested therapy, competently delivered as part of a wider discussion of the issues, would be criminalised.
This takes us away from a popular caricature of conversion to a more complicated picture of a type of talking therapy that might be actively sought, with more mixed motivations and with attempts to use effects of the process as the basis for wider exploration. Should that really be criminalised? Such an approach might be argued about on the basis of values rather than evidence, but it is difficult to read the research literature and find unequivocal justification for it.
As things stand, the government has backed off (again) and now says it will not legislate on consented therapy involving adults. It is difficult to believe, of this government, that the decision is one of principle – more likely a response to legal advice about difficulties of drafting the law. Only time will tell what the eventual bill contains. Meanwhile some careful planning of prospective research would be a good idea.
Steven Meanley, PhD, MPH, Sabina A Haberlen, PhD, Chukwuemeka N Okafor, PhD, MPH, Andre Brown, PhD, MPH, Mark Brennan-Ing, PhD, Deanna Ware, MPH, James E Egan, PhD, MPH, Linda A Teplin, PhD, Robert K Bolan, MD, Mackey R Friedman, PhD, MPH, Michael W Plankey, PhD, Lifetime Exposure to Conversion Therapy and Psychosocial Health Among Midlife and Older Adult Men Who Have Sex With Men, The Gerontologist, Volume 60, Issue 7, October 2020, Pages 1291–1302, https://doi.org/10.1093/geront/gnaa069
American Psychological Association, Task Force on Appropriate Therapeutic Responses to Sexual Orientation. (2009). Report of the American Psychological Association Task Force on Appropriate Therapeutic Responses to Sexual Orientation. Retrieved from http://www. apa.org/pi/lgbc/publications/therapeutic-resp.html 9 May 2022
Kate Bradshaw, John P. Dehlin, Katherine A. Crowell, Renee V. Galliher & William S. Bradshaw (2015) Sexual Orientation Change Efforts Through Psychotherapy for LGBQ Individuals Affiliated With the Church of Jesus Christ of Latter-day Saints, Journal of Sex & Marital Therapy, 41:4, 391-412, DOI: 10.1080/0092623X.2014.915907
Former UK foreign secretary David Owen has recently been reported as saying that Putin’s aggressive behaviour on the international stage may be a consequence of taking steroids. The evidence for this assertion is that Vlad’s got fatter in the face in recent times and is being unreasonably aggressive.
Owen has form in the cod diagnosis of politicians – giving us in 2019 the ridiculous condition of Hubris Syndrome – or hubris as we used to call it. My reading of the formulation there (excuse the technical jargon) is that after a few years in power people tend to get up themselves a bit, arrogant and not keen on being contradicted. However, I may be wrong and there’s more to it: a senior neuropsychologist tells us that Hubris Syndrome affects the frontal lobes drenching them in dopamine, and this could be the cause of Putin’s behaviour.
In the same article that reported the Hubris Syndrome idea, a different expert suggests that it’s something to do with the cognitive effects Long Covid. No less absurd as a hypothesis but I suppose it has the advantage of being bang up to date.
If any of this sounds familiar that’s because it is. Not that long ago experts were telling us that President Trump wasn’t just horrible but mentally disordered – most infamously in the multi-contributor volume The Dangerous Case of Donald Trump. And of course the most famous mad man of recent history is Hitler – name-checked 59 times in the Trump book in case we didn’t spot the provenance of the line of thinking. I could keep going but the trail is long – back to Suetonius at least (I’d have to stop there, my ancient history’s a bit thin).
It’s tempting to dismiss all this as ridiculous, which of course it is. It’s raised a momentary laugh when I’ve chatted about it with friends and that’s about what it’s worth. But there are reasons to think we could do with less of it, for the effect it has on the quality of public discourse.
First, pathologizing of political motives as symptoms of mental disorder is really just a variant of psychiatric name-calling, which is a form of insult we could do without. And it infantilizes public discussion about serious matters. Do we really think that the Ukraine invasion is the result of an aggressive impulse by somebody who has temporarily taken leave of his senses? Or that one man can run not just a complex military adventure but a whole country – without the collusion of others in it for the power, money, sex or whatever it is that motivates them?
Malignant despots have something in common, I think, with buffoon politicians like our own prime minister. They are symptoms of the system that allows them to stay where they are, their endurance reflecting not just something about their callous self-interest but also the values of those on whose collusive support they depend. All of which is kept out of the spotlight by daft pseudo-diagnostic medicalisation, a sort of dark-side version of the Great Man of History story which downplays the systemic and societal and privileges the role of the individual actor.
In clinical practice, a full diagnosis typically consists in the description of a particular presentation coupled with an account of the associated (causal) pathology that explains the presentation. Thus: you are breathless and I can’t hear breath sounds on the right side when I listen with my stethoscope (the presentation) because you have fluid surrounding your lung due to tuberculosis (the explanatory pathology). Diagnosis in psychiatry is rarely full in this way, typically consisting only of a description of the presentation.
If we consider the diagnosis of personality disorder in this light, does it make sense? The diagnostic statement is that the person is the presentation, and although there is assumed to be some sort of underlying deficit in psychological function that constitutes the associated (causal) pathology, it has to be said that after 100 years of inquiry what it is remains to be revealed. We are left with the diagnostic statement – your emotions, actions, thoughts aren’t symptoms of some condition you have; they are simply the expression (presentation) of your personality and therefore who you are is a mental disorder.
If that’s right, can debate about the status of the diagnosis be bracketed with debates about the clinical or social status of autism or physical disability? That is, the diagnosis can be criticised for pathologizing diversity or for essentialising the individual who becomes the problems they present? I don’t think this quite works as an analogy. For example, there is no ineluctable presentation in personality disorder which is why categorising sub-types has proved such a failure. Autism is autism is autism, while psychopathy can look like any number of things.
Apart from the mutability difference, there is something different from the neuro-diversity analogy in the way the “disorder” of personality disorder is defined – not just in social or interpersonal terms but in judgemental terms. The judgements are, at root, about acceptability of behaviour, emotional expression and so on.
So, making a diagnosis of personality disorder isn’t stereotyping or stigmatising as an unfortunate side-effect of the way some ill-informed people choose to treat those so diagnosed, it is inherent to the diagnostic process. If we say that who somebody is constitutes a mental disorder the features of which are socially and personally undesirable, and this “who somebody is” fits them in a category of similar people with the same mental disorder, then how could it be other than stereotyping and stigmatising, with the resulting responses being those we might expect towards anybody who is by definition undesirable?
It is more than a decade since NICE last published guidelines on the assessment and management of self-harm, so the recently released new guidelines (out in draft for consultation) will be read with some interest.
What we find is a mixed bag. For the most part the proposals are unexceptionable, the generation of novel ideas and advice no doubt hampered by the desperate lack of funded research in the area. Some suggestions are not impressive – for example a blanket endorsement of CBT for all adult self-harm is limited to put it mildly, and the section on harm minimisation is ill-informed and muddled.
There are, however, some welcome recommendations, most notably “1.6.4 Do not use aversive treatment, punitive approaches or criminal justice 5 approaches such as community protection notices, criminal behaviour 6 orders or prosecution for high service use as an intervention for frequent 7 self-harm episodes.” – a clear response to the HIN/SIM scandal and one that will make a difference, not least because it is supported by NHS England.
My guess would be that this is the only recommendation likely to make a substantial difference to service provision in the next few years because there are two barriers to change that NICE can’t really influence – the first is lack of resources and the second is culture in mental health services.
When David Owens and I wrote a lament for the state of self-harm services in the UK my friend Nav Kapur wrote a Pollyanna-ish reply, but in truth the situation is dire. Existing services like CMHT’s and IAPT will see hardly anybody and those they see will get an appointment neither on a timescale nor in the numbers needed for the nature of the problem. Liaison psychiatry services do most of the assessment but none has the clinic capacity to arrange therapeutic follow up. The few specialist services there are will see a small number of referrals for intensive longer-term therapy but only if strict eligibility criteria are met. There are several reasons for this state of affairs, but one of them is undoubtedly lack of investment in trained staff to do the work. Against a background of government “austerity” cuts, money has been found for psychotherapy provision in the NHS (through IAPT) and for an expansion of liaison psychiatry services, but none of it has found its way into the budget for self-harm aftercare. You can come up with as many recommendations as you like about support for people who self-harm, but if there are no services to deliver that support then nothing’s going to happen.
Culture eats strategy for breakfast, and the other piece of the puzzle resides exactly in culture. There are plenty of people who think, and behave as if, self-harm isn’t that important and the people who do it are just a bit of a nuisance. Patient feedback about services repeatedly makes this point – ED isn’t a great place, waiting to be seen is stressful, assessment doesn’t achieve much if there are no useful services to which somebody can be pointed after the assessment, but a lot of this can be tolerated if it doesn’t come with a message of hostility or indifference from the clinician seeing you. Of course it isn’t every clinician but it’s enough…especially for those unfortunate enough to have copped a diagnosis of personality disorder.
These two things play off each other – negative attitudes lead to, or at least lead to tolerance of, poor service provision, and lack of services leads to stressful uncomfortable encounters in which it is all too easy to slip into a hostile or blaming frame of mind.
I don’t think this is all there is to it but these two factors, which I have named here rather than unpacked very carefully, seem to me a good part of why the draft NICE guidelines bring such a sense of anti-climax. Most clinical conditions are now managed in established services delivering care that might be improved by careful attention from a positive and trained workforce to standardised evidence-based practice; that’s what NICE guidelines are for. In self-harm those conditions just don’t apply. Let’s not blame the NICE guideline development team, let’s look elsewhere for solutions.
Germany’s asylums between the world wars housed a mixed population – mainly of people with a learning disability or a severe and persistent mental illness. These people became the focus of Nazi interest for two reasons.
First – and this isn’t as widely known as it should be – residents of the asylums were the first large scale victims of the Nazi’s mass murder programmes. The technologies used later, on Jews, Roma, homosexuals, communists and others, were first developed in what is usually known as Aktion T4 (named prosaically enough for the original HQ address Tiergarten 4). That is, T4 developed gas chambers as an efficient method of killing, purpose-built crematoria for disposal of the bodies, and an associated propaganda programme that is hard not to see as enabling a sort of collusion with the general public. An estimated 200,000 people from the asylums were eventually killed in T4 and its sequelae. This history is covered in some detail in Michael Burleigh’s extraordinary 1994 book Death and Deliverance: “euthanasia” in Germany 1900-1945 (Cambridge UP, listed unbelievably as out of print now).
An apparently separate campaign waged by the Nazis took the form of what we would now call culture wars, with modern art as a particular target. The infamous Entartete Kunst (Degenerate Art) exhibitions curated by party members and promoted by Goebbels are well known, but less so is the link to asylum art. A number of key modernists had been intrigued and influenced by the work of apparently mad people – so-called art brut – a significant collection of which had been accrued by Hans Prinzhorn at Heidelberg and valued as being artistically important in its own right, not simply as a window into the mind of the insane.
The Nazis exploited this association in carefully managed presentations associated with the message – look how modern art is no different to the art of lunatics and imbeciles and yet you are duped into paying huge sums for the public galleries to own it. With the related message of course – it’s all part of a (Jew-orchestrated) conspiracy to undermine true Germanic society through undermining its culture.
The two stories inevitably intersect, with many (amazingly not all) of the asylum art works destroyed and the artists who made them perishing in the mass euthanasia programmes. This story is well told in a new book The Gallery of Miracles and Madness by Charlie English – unlike Burleigh a journalist rather than historian, with a predictably different but nonetheless well researched and engaging style.
The asylum artists who died in the T4 programme were caught in a perfect storm – of culture wars used by an authoritarian government to garner support for their wider political project; the motivating force of economic hardship coupled with the idea that alien enemies are to blame; the promotion of “euthanasia” as a solution to the societal problem of burdensome lives. Sound familiar?
The familiar first: O’Sullivan describes typical cases that come up in her clinical practice – seizures that aren’t due to epilepsy; weakness or paralysis when there is no identifiable neurological disease; persistent symptom states like chronic pain or fatigue when there is no apparent explanatory pathology. She is not talking about neurological diseases waiting to be diagnosed but about presentations in which “no disease is found because there is no disease to find. In those people the medically unexplained symptoms are present, wholly or partially, for psychological or behavioural reasons”. Refreshingly uninterested in worrying about terminology, she calls these conditions psychosomatic.
The book’s case histories contain some familiar details – responses to the diagnosis range from bemusement to downright hostility and rejection. And contact with a close family member or friend can provide revealing detail about likely causes or perpetuating influences.
And the unfamiliar? Like most doctors, O’Sullivan sees the cause of psychosomatic conditions as being primarily psychological and in her own practice she regards psychiatry as a part of the management plan. However, she is (far) more than usually willing to state this unambiguously and is interested herself in understanding what are the underlying problems. Here she encounters such a variety of stories – complicated bereavements, family and other interpersonal predicaments, gender discomfort, loneliness and more – that although she sees their relevance she cannot really discern a common theme.
O’Sullivan has clearly read more widely than many a clinician, for example in the history of psychosomatics and psychodynamic theories, and she is comfortable with the idea that the mechanisms driving psychosomatic presentations are unconscious and often involve a sort of dissociation – that is a disorganisation of usually-integrated mental processes. She sees the symptoms as having a function, perhaps defending against emotional breakdown or in some other way helping the patient adapt to the otherwise intolerable.
The book throws down a gauntlet in the form of a question: “If psychosomatic symptoms are so ubiquitous, why are we so ill-equipped to deal with them?” It is picked up in O’Sullivan’s second book on the topic The Sleeping Beauties and other stories of mystery illness, which describes her exploration of a number of “mass” episodes of psychosomatic illness. This could be a horrid parade of grotesques but it isn’t, instead providing a sensitive exploration of external social influences on illness and its course. Everywhere there are “…moral dilemmas, inconceivable choices, inequality” and the unenviable role of women in society.
The answer to the gauntlet question comes at least in part from the medical and other social and official responses, which do not come out of it well. They are often disparaging or dismissive, and mistrust of officialdom plays an important part in the difficulty of forming a shared therapeutic response. An important observation is made about the part played by official responses that simultaneously confirm the absence of underlying disease while at the same time downplaying or ignoring the psychological and social. This loops back to the first book with a comment about the currently favoured label of Functional Neurological Disorder which is “…used to imply that the brain is not functioning – therefore (rather ham-fistedly, I would say) placing the source of psychosomatic disorders firmly in the biology of the brain” – where O’Sullivan believes it does not belong.
Again, psychosomatic illnesses are seen as serving a purpose: “…perhaps we need release valves and coping mechanisms, face-saving ways of addressing conflict and grappling with ambivalence. Sometimes, embodying and enacting conflict is either more manageable or more practical than articulating it”.
Where next? There is work left undone by these two books. One task is that more work is needed to link lessons about the causes of what we might call the epidemic cases in Sleeping Beauties to the sporadic cases in All in Your Head: in particular to ask – is there really no common theme to the apparently disparate adversities that lead to onset of psychosomatic illness? This links to the need to consider other explanations for the onset of symptoms in the face of such adversities. We accept that depression can follow loss, anxiety can follow threat and PTSD can follow trauma, and we usually see such conditions as symptomatic breakdowns rather than adaptive responses. Perhaps we could look at psychosomatic illnesses in the same light, as manifestations of how we break down when faced with adversities that represent (the common theme) persistent and seemingly unresolvable conflicts, challenges and dilemmas.
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.