Conversion therapy – there’s still a need for better evidence.

  • May 16, 2022

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

Putin’s mental state? It’s time we dropped the childish and uninformative mad man view of history

  • March 4, 2022

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.

Personality disorder as a diagnosis: stereotyping and discrimination aren’t avoidable complications, they are inherent to the diagnostic process.

  • February 14, 2022

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?

New NICE guidelines on management of self-harm won’t lead to the changes needed – lack of investment and the culture in mental health services will see to that.

  • January 28, 2022

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.

Culture wars, economic hardship and disdain for mental illness and learning disability – a dangerous mix.

  • January 17, 2022

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?

Two excellent books about psychosomatic illnesses

  • January 9, 2022

There’s something both familiar and unfamiliar about neurologist Suzanne O’Sullivan’s book It’s All in Your Head:stories from the frontline of psychosomatic illness, which discusses her experience of psychosomatic illness while working as an NHS consultant.

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.  

Picturing Long COVID – time to drop a subtly undermining visual rhetoric.

  • October 13, 2021

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.

Long Covid: the numbers don’t add up, so why do we keep collecting them?

  • October 5, 2021

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.

NICE’s ME/CFS 2021 guideline: a much-needed pause for reflection

  • September 9, 2021

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.

Helpful words for people who self-harm

  • August 12, 2021

Emergency Departments and their associated mental health services don’t always get good press when it comes to feedback about how they respond to people who repeat self-harm and attend for help: this leaflet which has just become available online is a positive contribution and a good example of collaboration between statutory services and the people who use them. Just the fact that there is such a leaflet is itself a positive message – saying that the service takes the problem seriously. And the content is supportive and practical – it certainly bears the hallmark of having been written by people with personal experience. Maybe a small step but nonetheless a step in the direction of building bridges and improving mental healthcare. To be emulated!!