Journalism should take a zero-tolerance approach to publishing false or unverifiable claims
I often ask friends – when you read an article in mainstream media about a topic in which you have some expertise (about health if you are a doctor for example), how often do you notice that it contains incorrect information? The majority of answers fall at the frequently/very frequently end of the Likert scale we’d be looking at if I were polling rather than chatting. I’m not talking here about serpent-headed aliens, microchip-containing vaccines or stolen elections. But I am talking about mundane examples of misrepresentation through partial presentation of the facts and fabrication.
I give illustrations from the Guardian newspaper, not because it’s a major culprit but because it isn’t. If the problem is present even in the best, it’s present everywhere. I am a long-time reader of the Guardian and subscriber to its online edition. I value its balanced coverage and regard it as standing head and shoulders above all other daily newspapers in the UK for its reliability and lack of bias. But at times I am left wondering, even in this newspaper, about a particular piece – is this true? How would I know?
On the surface the examples I will give may seem like minor infringements, but unreliable reporting in any part of the paper can lead to lack of trust in the reporting of every part of the paper; and we are storing up trouble for the future if journalists following examples such as these come to believe that writing a good story takes precedence over writing an entirely accurate one. There is a fairly simple solution to the problem but before considering it, a few examples.
An article in January 2023 described a survey which was said to have “…found that one in five LGBTQ+ people and more than a third of trans people in the UK have been subjected to attempted conversion…”. As part of an online survey, respondents were asked whether they had ever experienced someone taking any action (my italics) to try to change, cure or suppress their sexual orientation or gender identity. Describing the findings, the phrase “subjected to” appeared in the article headline, in the final sentence and three times in the text. There was no link to the survey report but when I found one it revealed that the campaigning group commissioning the survey has a particular take on what “subjected to” means.
“There must be no “consent” loophole… Conversion practices are abuse and it is not possible to consent to abuse …The definition of conversion practices should include religious practices…”. So examples of what respondents were “subjected to” included “I saw a counsellor…” and “My partner ended our relationship because of God and then the people from church prayed for us to become straight.” For sure, there were quotes about much more unpleasant experiences but even there the reframing was unusual: being beaten up because you’re gay is wrong, but it’s a stretch to call it a conversion practice. There was no indication of a typology of practices or the prevalence of various practices – anything and everything goes towards the headline figure. This strikes me as a long way from what most people understand by the sort of conversion therapy that might be banned by legislation, but you wouldn’t know it from the way the survey was reported.
An article in June last year headed “Brain damage claim leads to new row over electroshock therapy” reported that electro-convulsive therapy (ECT) “…is now the focus of a huge row – which erupted last week – over claims that it can trigger brain damage, that guidelines covering its use are weak and that it is used disproportionately on women and the elderly.” Again there was no reported evidence of a huge row; just a link to a 5 year old Guardian article retailing the same criticisms from the same source as described in the 2022 article. The bust-up seems to have been imagined into life to act as a hook for the otherwise non-story.
Something from the pandemic. An article from January 2021 reported that the “Prince’s Trust happiness and confidence survey produces worst findings in its history”. Three accompanying comments linked the findings to the impact of the pandemic. The findings as reported were literally true (just) but a reading of the whole report gives quite a different picture. In 2021 just 56% of respondents said they were happy about, and 64% said they were confident about, their emotional health. Certainly the lowest on record but the corresponding figures for 2018 were 57% and 65%. In 2021 56% said there were always or often anxious. Again, the highest on record but the figures for the preceding years 2018-2020 were 53%, 54% and 55%. The really big changes have come since 2010 when more than 70% said they were happy and confident about their emotional health and fewer than 20% said they felt anxious or depressed all or most of the time. So a study that shows a decade-long decline in the emotional health of young people is reframed as a story about the impact of the pandemic by the simple expedient of not reporting most of its findings.
In a piece from January this year promoting assisted dying and entitled “Today, 17 people will likely die in unimaginable pain…” regular contributor Polly Toynbee writes, after a warm up about torture chambers, excruciating pain, horror and humiliation, that “On average 17 people a day die in terrible pain that can’t be relieved by even the best palliative care.” The claim is based upon a review undertaken by the Office for Health Economics which, like the research it is reviewing, refers nowhere to the severity of pain but only to “unrelieved pain” much of which, it would be clear to anybody familiar with the clinical scenarios, will not match the descriptions offered. Toynbee’s account of unimaginable pain in end-of-life care comes in fact from her own imagination.
Much of this would be avoided if journalists put a bit more work in – didn’t just recycle press releases and did some of their own fact-checking, aided by basic critical appraisal skills. How would we know if they were doing that? Online encyclopedia Wikipedia, in facing its own questioning about reliability, has developed a policy it describes as Verifiability, not truth. “Verifiability” means that material must have been published previously by a reliable source, cited by the writer and consulted by them. Sources must be appropriate, must be used carefully, and must be balanced relative to other sources.
Citing reliable sources, with a clear statement that the journalist has consulted them, gives readers the chance to check for themselves that the most appropriate authorities have been used, and used well. In fact none of the four examples I give here would be compliant with such a policy. If respectable and respected mainstream media are to maintain their reputation for trustworthiness they need to demonstrate how they manage reliability in their reporting and not just assert that they do. An explicit, and explicitly followed, verifiability policy would be a good start.
The rebranding should not blind us to the risks involved.
The argument for what is now called ‘assisted dying’ is often framed in terms of personal autonomy – the right to choose the time and mode of one’s death.
Individuals included in media reports as pressing for that right are typically mentally competent, educated, and supported by a partner or family member who affirms their desire to die. Campaigners pressing for change suggest (at times in strikingly gothic terms) that if their wishes are denied, the likely alternative is a difficult death during which pain is inadequately treated and distressing symptoms are mismanaged. ‘Assisted dying’ is thereby positioned as a form of patient-centred care – a death with ‘dignity’.
Put like this, the case can seem incontrovertible. Who wouldn’t want a ‘dignified death’ in which their own wishes were central to any decisions about their treatment? But this is a narrow and unbalanced way of framing the discussion; it fails to communicate the full range of questions that arise when thinking about serious illness. “Assisted dying’ is a euphemism for physician assisted suicide; it involves prescribing lethal drugs to somebody who will then self-administer them to end their life. Framing the practice like this gives a different perspective that is masked by the rebadging as assisted dying. What we know about suicide more widely becomes relevant in informing what we think about doctor-assisted suicide.
People living with severe, persistent physical illness can of course feel that their condition is intolerable. Indeed, research shows that about one in ten describe having thoughts that their life is not worth living, or that they might be better off dead. And suicide rates in people with a severe health condition are double those of the general population. Even so, recent data from the Office for National Statistics suggest that in absolute terms fewer than 10% of suicides are in people with a severe health condition. Some of the study findings come as a surprise; for example of 17,195 suicides identified from 2014-2017, only 58 (0.3%) were in people with what the study called low survival cancer. This is about three times the general population suicide rate but accounts for only 3 in every 10,000 of those recorded as having low survival cancer in the study period. In other words the great majority of people (more than 99%) with negative thoughts about their circumstances do not take their own lives.
What does research into suicide in the wider population suggest might make suicide more likely? Many of the leading risks are social – loneliness, living alone, low income and lack of employment, and a lack of social support. A history of problems with alcohol or drugs is also common, especially in men. So is a history of mental health problems – typically not psychotic illness but recurrent episodes of depression. More than half of those who take their own lives have a history of previous self-harm. These risks are also prominent when suicide occurs in the setting of severe physical illness, even among those who are simultaneously in contact with mental health services.
Suicide associated with severe physical illness occurs most commonly in the first year after diagnosis, especially in the first six months. This observation is in line with research showing that rather than intolerable and untreatable symptoms it is concerns about the future and loss of independence that motivate many requests for physician-assisted suicide.
US psychologist Thomas Joiner has outlined an influential interpersonal theory of suicide that makes much sense of these findings. He outlines three risks for suicide – thwarted belongingness (closely-related to the idea of lack of social connectedness), perceived burdensomeness, and acquired capability (overcoming the fear of death). Thinking about suicide in this way helps us to be clearer about the nature of suicide in the physically ill and therefore ‘assisted dying’, which is a risk for exactly those people whose suicide we are used to working to prevent, by actively helping people to “acquire capability”.
The response to these concerns rests upon assurances that only carefully selected cases will be accepted into a programme of assisted suicide. We can have no confidence that such “safeguards” will be adhered to. For example in one study from the Netherlands, 12% of those accepted failed to meet the criterion of there being no alternatives for palliative treatment and 7% were not reported has experiencing unbearable suffering. I have yet to see a statement from supporters of medical assistance in dying about their opinion on what is an acceptable error rate in the system.
There is another reason for concern about doctor-assisted suicide – less tangible perhaps but with far-reaching consequences. It fundamentally changes our approach to suicide, Under the Suicide Act 1961 an act “intended to encourage or assist suicide” is a criminal offence. There are no exclusions – it is an all-encompassing approach that is reflected in our National Suicide Prevention Strategy. What is proposed is a radical overhaul of the way we approach suicide – a move away from trying to prevent all instances to a world in which we attempt to prevent suicide except when we decide to make it easier.
We are facing in medical assistance in dying a privileging of personal preference over social concern. It represents not just a modification of individual clinical practice but a societal intervention designed to change how we think about and respond to suicidal wishes. I find it hard to believe that the longer-term consequences, intended or otherwise, will be of universal benefit to those most in need of our care.
Coverage in the mainstream media of the findings of the Molly Russell inquest concludes that the case is now made for direct action on regulation. However, in these and other similar pieces there has been little discussion of what specifically such regulation might entail or of the challenges of implementation. Here is a sample from just one newspaper:
Molly Russell dies while suffering negative effects of online content rules coroner Dan Milmo, 30 October
Why is it so hard to say specifically what should be done? For sure there will be resistance from the tech companies, but an additional dilemma is that much of the content under consideration (about depression, self-harm and suicidal thinking) is seen as helpful by those who use social media – valued for its 24/7 availability and anonymity and for the supportive nature of sharing and viewing user-generated content. The challenge therefore is to eliminate the negative impact of social media without blocking access to its helpful elements.
Although the main emphasis in discussions about regulation has been on harmful content, that is only one of three aspects of the problem to be considered.
A central issue is algorithmic pushing which increases duration and intensity of exposure. We know that people with existing mental health problems are more likely to spend long periods online and more likely to use sites with content related to self-harm, and there is some evidence that such extended exposure makes matters worse. So, what limits should be set on these quantitative aspects of social media viewing?
The question of what to do about algorithmic “recommendations” is confounded with one about content. It is generally accepted that it would be no bad thing if searches for key terms (self-harm, suicide and so on) were to trigger responses offering links to helpful resources, which raises the question of how to identify specific content as helpful (OK to recommend) or harmful (not OK). In relation to moderation of content, harmfulness is usually defined by terms like glamourising, normalising and encouraging. These words are used without definition and yet proposed as the main criteria upon which any duty of care will be judged. How are they to be defined and identified in ways that don’t just rely on individual opinion?
Monitoring and responding to problematic patterns of use is a key issue in debates about online gambling – how to achieve it without driving away those who resent the idea of surveillance and loss of privacy?
Journalists may not see it as their job to grapple with these questions. Here are three suggestions from non-journos whom we might consider as having something important to say:
The coroner in Molly Russell’s case issued a prevention of future deaths report:- in which he said:
“I recommend that consideration is given by the Government to reviewing the provision of internet platforms to children, with reference to harmful on-line content, separate platforms for adults and children, verification of age before joining the platform, provision of age specific content, the use of algorithms to provide content, the use of advertising and parental guardian or carer control including access to material viewed by a child, and retention of material viewed by a child.”
The government’s plans are to be found in its Online Safety Bill. At the point at which they published their last factsheet (April 2022) on the topic, this is what they had to say:
“Platforms likely to be accessed by children will also have a duty to protect young people using their services from legal but harmful material such as self-harm or eating disorder content. Additionally, providers who publish or place pornographic content on their services will be required to prevent children from accessing that content.
The largest, highest-risk platforms will have to address named categories of legal but harmful material accessed by adults, likely to include issues such as abuse, harassment, or exposure to content encouraging self-harm or eating disorders. They will need to make clear in their terms and conditions what is and is not acceptable on their site, and enforce this.”
The coroner’s report covers all three bases in some ways but shares an important feature with the much more limited Online Safety factsheet – undesirable content is identified by the single word “harmful” which is not defined apart from a suggestion in the factsheet that it is likely to include “encouraging” which isn’t defined.
Multiple charities with an interest in the mental wellbeing of young people wrote a letter to the then prime minister Liz Truss in October, in which they attempted to unpack the idea of harmfulness in a constructive way:
“We are writing to urge you to ensure that the regulation of harmful suicide and self-harm content is retained within the Online Safety Bill…[defined as]
Information, instructions, and advice on methods of self-harm and suicide
Content that portrays self-harm and suicide as positive or desirable
Graphic descriptions or depictions of self-harm and suicide.”
The first two criteria look as if they ought to be amenable to careful definition; “graphic” is more problematic. One person’s clear and vividly explicit detail is another’s matter-of-fact account. Or does it mean – any image (depiction) at all, that is not shaded/pixelated or whatever – descriptions of how to look after or conceal your wounds for example?
There seem to me to be two risks here. The first is that decisions will be left to Ofcom and (presumably) to the courts. The second is (perhaps less likely) that the tech companies will decide they can’t be bothered with all this and will go for some variant of blanket suppression of interactions about self-harm and suicide. Neither is desirable: the former if it leads to the sort of adversarial debate that failed to clarify these questions during the inquest, the latter if it ends up denying access to helpful content. There is emerging research that can contribute and health professionals should lead in arguing for its inclusion in decision-making, so that a realistic balance is struck between risks and benefits of social media in an important areas of public health policy.
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.
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.