Psychiatrist Simon Wessely has been appointed to chair the National Children and Young People’s Gender Dysphoria Research Oversight Board. This board has oversight and leadership of the research program which aims to underpin the redesign and redevelopment of the children and young people’s NHS gender services. The research programme includes a data linkage study, a puberty blocker study and a living systematic evidence review study. The chair of the research oversight board has considerable authority over the entire research program, is a primary reporting line for researchers and will liaise with the principal investigators of individual research studies.
Simon Wessely is a psychiatrist and epidemiologist who has worked in numerous senior positions. Wessely has a history of working closely with state bodies to promote contentious theories about issues of healthcare, disability and benefits and has been closely associated with discredited research in this area. He argues that belief in conditions contributes to their spread and continuation, using theories that often veer into pseudoscience. This has resulted in harm on an institutional level where he has influenced the policy of the DWP and argued against allowing for litigation for psychiatric harms related to trauma. Wessely frequently attacks and seeks to discredit patient advocacy organisations and disabled activists who criticise the effects of his work on their lives. Much of Wessely’s public statements stray into sanism, disablism and other stigmatisation of marginalised groups.
Wessely was closely involved in the PACE trial, a highly controversial and deeply methodologically flawed study into the treatment of ME, that was marked by significant issues with research transparency.
In this context, Trans Safety Network is concerned about the role that he may play within the National Children and Young People’s Oversight Board.
Simon Wessely frequently attributes issues that he comments on to psychogenic origin, and where a psychiatric origin is the cause (as with PTSD) he looks to preexisting factors as an explanation. He frequently refers to historical diagnoses of hysteria and neurasthenia and suggests that a whole range of illnesses are modern versions of these Freudian neurotic disorders. Wessely coauthored a paper with Chiachana Nimnuan and Michael Sharpe (one of the principal investigators of the PACE trial) which argued that all of the conditions that fall under functional somatic symptoms or medically unexplained symptoms (MUS) are the same thing - psychosomatic conditions with the same underlying psychiatric pathology presented to different medical specialists dependent on the somatic symptoms experienced. They included twelve different conditions in this argument including pre-menstrual syndrome, fibromyalgia and temporomandibular joint dysfunction (TMJ). The paper argues that a condition being more common in women is a reason to suspect psychosomatic origin, which in TSN’s opinion is deeply misogynistic. The paper also argued for reclassification into one syndrome rather than distinct classifications within medical specialities, mostly to reduce costs.
“Functional somatic symptoms and syndromes are a major health issue. They are common and may be persistent, disabling, and costly. Most of the current literature pertains to specific syndromes defined by medical subspecialties. We have put forward the hypothesis that the acceptance of distinct syndromes as defined in the medical literature should be challenged.” - Wessely S, Nimnuan C, Sharpe M. Functional somatic syndromes: one or many? Lancet. 1999
More recently, Wessely has applied the same theories to schoolgirls in Iran who fell ill in 2023 with suspected gas poisoning following a wave of anti-government protests. Amnesty International drew attention to the health authority’s failure to investigate the cause of their illness.
Whilst the cause has not been proven or properly investigated, it was quickly and confidently attributed to a psychological, socially contagious source by Wessely:
“Prof Simon Wessely, a psychiatrist and epidemiologist at King's College London, said several "key epidemiological factors" led him to believe these were not a chain of poisonings, but were instead a case of "mass sociogenic illness" - in which symptoms spread among a group with no obvious biomedical cause. The spread of cases across the country and the fact it has been predominantly affecting schoolgirls, with fewer boys and adults falling ill, were central to his conclusion, he said. The nature of the symptoms and the fact most patients quickly recovered were also key, he said.” - BBC article 03/03/2023
As in Wessely's previous work on somatisation, he seems to suggest that a condition primarily affecting women or girls implies a greater likelihood of a psychogenic origin. Schoolgirls in particular had been taking part in anti-government protests and it was widely believed that students were being deliberately poisoned in attempts to close the girl's schools. Wessely’s conclusion is in alignment with that of the Iranian authorities who according to Amnesty International have dismissed the illnesses as stress and mental contagion. TSN is concerned that Wessely has once again engaged in what appears to us to be a misogynistic approach to the health of women and girls, in this case in the absence of any concrete evidence and at a considerable distance.
Conditions that Simon Wessely has attributed to psychosomatic causes include illness following water poisoning accidents, respiratory disease that led to cancer post 9/11, Myalgic Encephalomyelitis (ME) and Gulf War Syndrome. Wessely also has concerning opinions on PTSD and neurodivergence and has claimed both have elements of social contagion fueled by the media.
Institutional harms
Simon Wessely advised the Department for Work and Pensions (DWP) to restrict ME patients’ access to welfare benefits and has misrepresented his role in doing so. In 1993, Wessely wrote to Mansel Aylward who at the time was the Chief Medical Officer at the Department of Social Security (DSS), now the DWP, complaining that ME would be listed under 'other neurological disorders' in the handbook of disabilities for Disability Living Allowance (DLA). This would have brought the definition of the condition in alignment with how it has been classified by the World Health Organisation since 1969 but Wessely complained about the 'partisan' influence of patient organisations, stating:
If CFS/ME is to be listed as a neurological disorder, I for one will begin to campaign via the mental health charities for schizophrenia and manic depression to be listed under the same heading. - Letter from Simon Wessely to Mansel Aylward, available in National Archives BN141/1, pages 17-18
Wessely’s letter did not read as mere concern about a categorical error he believed to be the detriment of a patient group. As a psychiatrist, he will have known and (hopefully) understood that the disabilities referred to, schizophrenia and bipolar (formerly called manic depression), can be enduring and can require long-term support. Yet his letter went on to say,
I believe that the Department is making an error if it accepts the partisan views put forward by pressure groups as a basis for making medical decisions. I also believe that it is a decision that the department will regret, since it seems likely the result will be an ever increasing stream of claims for permanent benefits in people who might otherwise have had a chance of recovery. - Letter from Simon Wessely to Mansel Aylward, available in National Archives BN141/1, pages 17-18
In an article on Wessely’s website titled ‘CFS Myths. Misunderstandings and Misperceptions’ he responds to several criticisms and claims regularly raised by ME patients and groups. In addressing the claims that he advised the DWP resulting in ME patients being denied benefits he quotes the DWP’s response to these allegations, a response which does confirm his advisory role in guidance.
“Professor Simon Wessely has not been involved in the development of CFS/ME guidance but has advised with guidance developed for some psychiatric conditions. He has served as a member of Dame Carol Black’s working group on employment”.
Wessely also addressed what he describes as misrepresentations of “a letter” written to Mansel Aylward at the DSS in 1992 which became available in the National Archives in 2012. Wessely claims to have forgotten about having written this letter and links to it “for completeness”, and to show that he was writing in support of patients and patient charities. The letter Wessely links to is another written to Mansel Aylward in 1992 regarding a previous version of the DSS disability handbook, ignoring multiple letters released by the National Archives that campaigners had raised concerns about, including the one quoted above. Whilst the letter Wessely refers to did express some concern that findings reported in medical literature considered by the committee at the time might be interpreted as meaning patients were not experiencing any (psychiatric) impairment, it does argue that longer benefit awards could affect the prognosis of the condition. Nevertheless, posting the least harmful of a series of letters as ‘the letter’ is misleading. This was one of several letters that can be read in the national archives and preceded the one quoted above. Likely, Wessely had not expected to be questioned about these communications as the files of communications between the DWP (then DSS), medical experts and patient organisations were redacted under Sections 40 and 41 of the Freedom of Information Act and not intended for release until 2072 but were released earlier due to the work of Valerie Eliot Smith in appealing these redactions.
In 1993, Wessely spoke about ME at a DLA full board meeting. In this talk, Wessely claimed;
As regards benefits:- it is important to avoid anything that suggests that disability is permanent, progressive or unchanging. Benefits can often make patients worse. - Chronic Fatigue Syndrome: Summary of the talk given by Professor PK Thomas and Dr S Wessely on 2.11.93, available in National Archives BN141/1, pages 6-10
Whilst Wessely may well genuinely believe that patients being believed about their degree of illness and disability and receiving disability payments and healthcare per their level of impairment is somehow harmful to them on a subconscious level. It is demonstrably more harmful not to be able to afford to eat when too unwell to maintain employment. It is also more dangerous to encourage healthcare professionals and individual support networks to withdraw support based on abstract ideas rather than concrete proof of this being in the person's best interests. Whilst it is doubtful that someone would seek to remain on such a low income should their health improve, pushing work before sufficient recovery could make a return to work less likely as evidence suggests that pushing to do too much activity, particularly in the earlier stages, contributes to worsening ME. However, Wessely continues to contest this in his ongoing defence of the PACE trial, a discredited medical study on patients with ME that was partially funded by the DWP. Further issues with the PACE trial and dubious research practices are discussed later.
It is easy to see why such theories are of significant interest to the state when they offer a theoretical justification for reducing financial support to a patient group with limited energy to fight back. Wessely's ideas and those of his associates were and are of interest to the state to the point of significant financial investment.
Wessely’s paper at the 'Illness Deception and Malingering' conference in 2003 on historical perspectives of malingering suggests that he views the role of doctors as gatekeeping welfare funds. Notably, this conference was partially funded by the DWP and insurance company Unum (previously known as UnumProvident). The conference led to a published book of the same name, including a chapter by Wessely with the same title and topic as his conference paper, the book featured a chapter by Professor Micheal Sharpe titled 'Distinguishing Malingering from Psychiatric Disorders' who also has contributed to reports on a wide range of medically unexplained conditions for Unum. The book acknowledged Professor Peter White, who became the principal author of the PACE trial and Professor Micheal Sharpe, a lead investigator for the trial, which Wessely helped design as director of the Chronic Fatigue Research Centre at Kings College London.
Wessely uses psychosomatic and psychiatric epidemiological theory to argue that people who develop PTSD following trauma should not receive financial compensation even if there is clear blame for the traumatic event. He calls into question the validity of the diagnosis entirely, questions the role of trauma in its development and blames the legal culpability cases and subsequent media coverage for the spread of the condition.
In 1995 Wessely wrote an editorial on liability for psychiatric illness in litigation claims with recommendations for the Law Commission to consider following a symposium on psychosomatic medicine and the law. His paper called into question the validity of the diagnosis of PTSD from the perspective of psychiatric epidemiology.
“ I wish to draw attention to three areas that informed many of the papers presented at the conference held at the Royal College of Physicians, but have had less influence on the thinking of the Law Commission. The first is the subject of causation, and the differing concepts used in medicine, psychiatry and the law. The second is the epidemiology of psychiatric disorders and their relationship to life events. The third is the role of legislation and litigation in perpetuating psychiatric disorder. I shall draw on examples from the literature on post traumatic stress disorder, life events and psychosomatic disorders. I shall argue that by espousing a simple medical model of the causation of psychiatric disorders, and hence by failing to recognize the complex multifactorial models that operate in psychiatry, there is a risk of a considerable increase in litigation for psychiatry injury, which in turn will have an adverse effect on the public health.”
Wessely said that PTSD is unique in psychiatry because the cause of it is presumed to be known. However, he disputes traumatic events being the cause as not everyone who experiences such events develops PTSD. Wessely further argues that some people develop other psychiatric conditions and those who do develop PTSD have pre-existing factors such as poverty, parental divorce, childhood behavioural problems, neurotic disorders and possibly a genetic predisposition. Wessely claims that the intention of the diagnosis’ reliance on having experienced an unusually traumatic event is “to distance PTSD from other psychiatric conditions by implying that it is a 'normal' reaction”. He continues to claim that;
“The 'discovery' of PTSD was not the result of any careful hypothesis, epidemiological investigation or even serendipitous inquiry. It arose in response to America's own 662 Editorial traumas associated with the Vietnam War. PTSD was created 'consciously and deliberately' [11] by a section of the mental health community”
He draws comparisons between old Freudian diagnoses of neurasthenia and hysteria. Both of these were anxiety neuroses, but neurasthenia was more frequently diagnosed in men, particularly men of higher social status such as military officers. Whereas hysteria was more commonly diagnosed in women and men of lower social status. Neurasthenia was associated with a previously more “mentally sound constitution” than hysteria.
“The history of nervous shock, traumatic neurasthenia and shell shock (and in particular the differences between hysteria and neurasthenia) remains relevant as an example of the role of social judgement in psychiatric diagnosis.”
Wessely argues that PTSD has been constructed to serve the same social role as neurasthenia - a way to avoid the stigma associated with psychiatric illness by constructing one that any person of ‘sound mind’ could develop in the right circumstances. He compares increases in PTSD diagnosis with increases in conditions he considers to be psychosomatic. In particular - repetitive strain injuries, back pain and whiplash, for which he blames the prevalence of litigation and subsequent media coverage. He then urges the Law Commission to consider the role of “eggshell personalities” in making individuals susceptible to PTSD rather than the traumatic events that clinical consensus would usually point to.
“Most people, even those outside the legal profession, are probably familiar with the concept of the 'eggshell skull'--you take your plaintiff as you find him or her. This principle applies to physical injury. The equivalent as regards psychiatric injury is the 'eggshell personality'--some people are particularly predisposed to develop psychiatric injury in response to events or injuries that would not necessarily have affected others”
His use of psychiatric epidemiology to construct theories of social contagion in ways that question longstanding clinical consensus suggests that we need to monitor carefully the objectives and outcomes of trans health research that Simon Wessely is overseeing.
In 2023, Simon Wessely was appointed to the board of NHS England. Since 2017, Wessely has been sitting on the Judicial Appointments Commission as a lay commissioner. This board selects candidates for judicial office in England and Wales and for some tribunals with UK-wide powers giving him a high level of influence in the UK legal and medical system.
False claims of psychogenic illness
Simon Wessely has a long history of incorrectly claiming pysychogenic origin for illnesses later found to have a physical cause. Wessely was consulted on the Camelford water pollution incident and worked to cast doubt on the resultant health consequences. In 1988, aluminium sulphate was accidentally added to the reservoir distal at a purification plant. This resulted in a massive aluminium load in the water supply and other metal salts, zinc, copper, and lead leached from water pipes. The public was not informed of the incident for 16 days. Residents reported a wide range of symptoms, including green hair, vomiting, skin irritation, vomiting and bowel and cognitive problems. Problems that Wessely and Anthony S David attributed in a paper to a media frenzy and pre-existing somatoform disorders in those reporting persistent symptoms. The first government inquiry in 1989 concluded that there would be no lasting health effects, with a second in 1999 suggesting there could be. South West Water was fined the same year, and then in 1995, 148 victims received out-of-court settlements. An inquest into the death of one resident concluded that aluminium found in the brain likely contributed to her death. There is no evidence that Wessely or his colleagues apologised for their speculative theorising.
In 2002, Wessely published an article in the right-wing publication Spiked blaming the high levels of illness in residents of Lower Manhattan and emergency workers following 9/11 on fear, anxiety and over-medicalisation of distress. Wessely blamed these illnesses on anxiety created by increased emergency preparedness following the anthrax attacks and subsequent hoaxes that occurred in the month following 9/11, increasing awareness of general environmental concerns and clean air legislation.
“Anthraxiety and World Trade Centre Syndrome are the latest consequences of an ideology that tells us that our physical environment is responsible for most of our bodily discomforts and ills.” [..] “Who do I blame for this? In the UK, I blame generations of politicians who have been in charge of the health service, and who have found it hard to say ‘enough is enough’ – instead writing ‘patients’ charters’, which perpetuate the idea that unrealistic expectations can be met.”
However, these post-9/11 illnesses were very serious. In 2023, the BBC reported that over 340 first responders have died from 9/11-related illnesses. Many of them went on to develop cancers and pulmonary fibrosis and were more susceptible to death from Covid-19. Again, there is no evidence that Wessely issued any apology for his insulting statements dismissing these illnesses.
Military personnel who fought in the Persian Gulf War of 1991 reported lingering illness symptoms that included headaches, memory problems, joint pains, fatigue and insomnia to a seriously debilitating degree. In 2003 Simon Wessely was commissioned by the British Army to investigate the syndrome and continued this work through the Kings Centre for Military Health Research at Kings College London. After eliminating suspected initially proposed biological causes for Gulf War Syndrome, Wessely put forward theories of social contagion, somatisation and false illness beliefs. Wessely stated that “The strongest factor associated with the belief that they had Gulf War syndrome, it turned out, was knowing someone else who had it”. This illness is now thought to be caused by Sarin Gas, with a recent study suggesting that some people have more genetic susceptibility to illness following prolonged low-level exposure to the nerve agent.
Whilst Wessely did state that those with Gulf War Syndrome were genuinely ill and this work led to war pension eligibility on psychiatric disability grounds, his concerns about reducing stigma about mental illness are disingenuous, selective and inconsistent. In an interview for The Psychiatrist, when asked about the most important lesson learned from working with veterans, Wessely answered;
“That those who have served in the armed forces and who are now experiencing problems or difficulties of whatever nature, remain proud people whose self-image is based on coping and resilience. Victim culture is not part of their nature, and we should ensure that we don't treat them that way. Most are neither hero nor victim, but professional.” - Simon Wessely, quoted in e-Interview, The Psychiatrist, January 2018
Yet as discussed above Wessely has claimed that PTSD was deliberately constructed as a way for soldiers to avoid the stigma of mental illness and blames a lack of resilience, rather than trauma for the condition’s development.
As with the Camelford water pollution incident and the high levels of illness and subsequent deaths in 9/11 first responders, Wessely has faced no consequences for being incorrect in attributing Gulf War Syndrome to psychogenic factors. In fact, in 2013 he received a knighthood for this work.
The speed at which Simon Wessely attributes health conditions to psychogenic origins with a socially contagious aspect, despite having frequently been wrong in the past is deeply concerning.
Hostility to transparency
Simon Wessely has a history of opposing research transparency and claiming abuse in response to criticism. Wessely moved away from research into ME following claims of abuse and a need to install panic buttons and have packages x-rayed. He calls patient campaigners militants who "abuse the Freedom of Information Act" by numerous FOI requests to committees and departments. Whilst this arguably adds to workloads, researchers and the general public do have a right to request information via the act and using it in this way is certainly not abuse. It is particularly cruel to call the vital work done by patient researchers like Alem Mathees for the benefit of other ME patients, sadly to the detriment of his health, an abuse of the Freedom of Information Act.
Wessely disparages the work of patient organisations, who are pointing to concrete ways his work can be linked to the DWP and insurance companies (via his enduring professional relationship with Ayelward Mansel) in terms that suggest that they are conspiracy theorists. Wessely has further falsely suggested that patients think a cure is being withheld when they are pointing out the disproportionate amount of research funding allocated to ME that went into the PACE trial compared to other avenues of research into the condition. Wessely and some of his colleagues claim to have received death threats, but a tribunal judge found the claims of threats towards ME researchers to have been exaggerated. These alleged death threats were cited in the refusals from Queen Mary University in its refusals of Mathees FOI requests for the PACE study data. Wessely has chosen to paint the whole patient community as militant activists based on the alleged actions of a small minority and thus shifted his research focus to Gulf War Syndrome and other medically unexplained illnesses. However, via his connection to the Science Media Centre, of which he was a trustee, he continued to defend the PACE trial and criticise the new NICE guidelines.
ME, the PACE study and dubious research practices
Simon Wessely is most widely known for his work on Myalgic Encephalomyelitis (ME), a condition that falls under the umbrella of ‘energy impairments’ within the disability community. However, exhaustion is only one of many symptoms of the condition, is not unique to ME and is seldom the most troublesome symptom despite commonly being dismissively referred to as ‘chronic fatigue’. ME is widely considered ‘medically unexplained,’ with no clinical consensus on its origins. The dominant psychiatric opinion is that the condition is psychosomatic and Simon Wessely is a key proponent of this, arguing that ME is ‘the new Neurasthenia’.
ME seriously impacts the lives of people with the condition, and there are no medically agreed-upon definitions of severity. What is often referred to as “mild” ME in the literature still describes a high degree of debilitating symptoms. Many patients fluctuate between moderate and severe. Some remain severe, usually house or bedbound and some (25%) progress to a very severe state requiring full-time care and often hospitalisation and medical nutritional support. Some severe and very severe patients have been detained under the Mental Health Act, and some have died. Some of these deaths are due to suicide and some are reported as directly due to the condition.
Some doctors and researchers believe ME to be a post-viral condition, and there is some suggestion that some people have a predisposition to post-viral illnesses. This is a theory that is gaining more traction following the prevalence of similarly presenting chronic illness following infection with COVID-19. However, psychiatric professionals and researchers, including Simon Wessely, have disputed this theory.
Simon Wessely has been criticised for his impact on research into ME, interventions around the NICE guideline changes and DWP assessor guidelines for the condition. Sean O'Neill, the father of Maeve Boothby-O'Neill, a young woman with ME who died in 2021, directly blamed Simon Wessely for the results of his influences on public narratives of disbelief about the condition in a statement during the inquest into her death. O'Neill also called out the "medical orthodoxy" that ME is a "behavioural problem" in his statement, saying:
“This orthodoxy led to Maeve being stigmatised in a way that so many patients are. The view is taken that they are malingerers or feigning illness or somehow parents are responsible. It is a view held by many powerful individuals in the NHS.” - Sean O’Neill, statement to coroner The Guardian, August 2024
The PACE trial was a controversial randomised study into behavioural modification therapies for ME. Simon Wessely advised on the design and execution of the trial, contributed as a Centre Lead, and was acknowledged for commenting on an earlier draft of the report. Despite this Wessely claimed that his only role in the trial was recruiting a few patients.
PACE is the only medical trial ever to have received funding from the DWP. Freedom of Information (FOI) requests revealed that Mansel Aylward agreed to the DWP funding for the trial because:
“In his [Aylward’s] role as Chief Medical Adviser he felt it reasonable to support this trial, particularly as when the trial was initially being developed, consideration was given to exploring employment and social outcomes for people taking part in the trial. Additionally, one of the secondary measures considered as part of the trial was the impact that the trial would have on the ability for employment and study.
We believe that the findings of the trial will contribute to the continuingly growing evidence base, which informs the development of health and work-related policy, policy based on the large body of evidence showing that work is good for physical and mental well-being and that being out of work can lead to poor health and other negative outcomes”. - DWP Central FOI team, from Part funding of the PACE trial by the DWP, WhatDoTheyKnow
Aylward was also an observer on the PACE trial steering committee. The trial, published in the Lancet, compared standard medical care alone and in combination with Adaptive Pacing (energy management), Cognitive Behavioural Therapy (CBT), and Graded Exercise Therapy (GET) and reported that the CBT and GET groups saw the most improvement. The same authors reported these findings in other medical journal articles. However, patient groups raised concerns due to the number of patient reports of decline in function following GET and no benefit from CBT. Patients began to question the methodology and campaign for the complete anonymised data of the study to be released for further analysis. Alem Mathees, an ME patient, submitted FOI requests that Queen Mary University London repeatedly denied until August 2016 when they lost at the appeal. Alem worked alongside health journalist David Tuller and ME experts to raise awareness of the methodological flaws in the trial in an open letter to the Lancet before the tribunal’s ruling. Alem’s work to expose the issues with the trial contributed to a severe decline in his health.
The release of the anonymised data revealed significant flaws, including changes to the criteria for recovery that left the same groups simultaneously classified as disabled and recovered. In a breakdown of the poor scientific quality of the study Statnews said
“Their revised definition of “recovery” was so loose that patients could get worse over the course of the trial on both fatigue and physical function and still be considered “recovered.” The threshold for physical function was so low that an average 80-year-old would exceed it…They found no significant improvement on any of their objective measures, such as how many patients got back to work, how many got off welfare, or their level of fitness.” - Julie Rehmeyer, Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back, StatNews, September 2016
The methodological issues and lack of objectivity in the planning and statistical analysis of the PACE trial are considered to be so severe that it is taught by universities as an example of how not to conduct a randomised clinical trial.
Following the debunking of the PACE trial and significant campaigning, the NICE guidelines for ME/CFS, as it is called within the NHS, were changed. There was widespread controversy in the medical community and lengthy discussions in the medical press between researchers associated with PACE (including Wessely) and other experts. The changes to the NICE guidelines are slowly having an international impact and some slow effects within ME/CFS clinics. Still, there is uneven adherence to the guidelines, little outside of specialist care provision has changed, most GPs have outdated knowledge and many outright reject the diagnosis. Simon Wessely, along with Peter White, Micheal Sharpe and other associates, is still objecting to the NICE guidelines and defending the PACE trial findings.
That Simon Wessely advised on design, contributed to, and was less than transparent about his level of involvement in such widely discredited research suggests that he is not suited to have oversight of research involving trans children and young people, another highly stigmatised and vulnerable patient group.
Wessely led the most recent Independent Review of the Mental Health Act, upon which the 2022 draft legislation was based. His appointment in 2017 was the subject of a statement by Disabled People’s Organisations who raised concerns about his work with ME, defence of the PACE trial and his work alongside insurance industry professionals in ‘malingering and illness deception’ and its impact on DWP policy. Disabled people and psychiatric survivor-led organisations criticised the review and the draft legislation backing away from full reform of the Mental Health Act and for not involving user-led organisations and people with lived experience in the review process. It was also criticised for “falling short on human rights and protections for minorities” as it is not in full compliance with the UN Convention on the Rights of Persons with Disabilities.
In a recent article in the Times, Simon Wessely again complains that increasing mental health awareness is “creating demand that the NHS was not set up to meet” without considering that perhaps the NHS was set up at a time when stigma and disablism were less frequently challenged and that it could and should adapt to this. The context of these comments was discussions with medical students in a training capacity and that the young people he spoke to were identifying social problems, such as loneliness, academic pressures and global issues such as climate change rather than clinical disorders. Wessely called on the health service to address the fact that “Gen Z” are supposedly more likely to talk about mental health problems and that this is creating a burden. He said there is a danger in “over-medicalising” conditions that are not really “the business of doctors and GPs”. Wessely frames this increased level of awareness as the over-medicalisation of everyday life yet the bulk of his comments in this article complain about increases in referrals for ADHD and Autism make it clear that his issue is actually with the neurodiversity movements’ resultant shift in self-awareness and advocacy aiming to destigmatise the diagnoses.
This mirrors concerns raised by Wessely in the Lancet in 2014 about increases in ADHD diagnosis in children and the role that he sees support groups playing in this. He also suggests that ADHD is both over and under-diagnosed, that ADHD medication is overprescribed and claims “it's psychiatry which is against the medicalisation of normality”. I think the majority of service users and neurodiversity theorists would disagree! Certainly, the more critical theorists would point towards the ways in which people have already been pathologised and the conception of normality itself as the problem. As long as people require medical proof to obtain workplace accommodations and medication if it is helpful, then diagnosis-seeking will rise.
It is disablist barriers entrenched within society and medical gatekeeping that are the issue here, not reclamation and self-awareness. Casting the blame onto the wrong people re-entrenches the very stigma that he claims elsewhere to be concerned with. It is not affirmation that is the problem, but framing disability in terms of costs to the state. This seems to be nothing more than an objection to the questioning of medical authority over bodyminds which becomes more apparent in his objections to neurodivergent artistic performance. In another recent article in the Spectator about the Edinburgh Fringe festival Simon Wessely took issue with performances that dealt with themes of neurodiversity.
“There has been an explosion since the pandemic of adult patients across the NHS demanding their lives are redefined by some hitherto undefined mental health diagnosis, such as autism, OCD or ADHD. Autism is a very serious illness, a terrible illness, the inability to read other people’s mental states. When I was a junior psychiatrist the idea that someone with autism would be doing stand-up comedy at Edinburgh would just have been ridiculous. But now it’s common place.”
The diagnosis rates of Autism, ADHD, and other conditions that fall under the neurodiversity umbrella had been steadily increasing long before the pandemic. Reasons for this are changes in clinical criteria following research into varied presentations and increased public awareness due to media coverage and education rather than ‘an epidemic’ of new cases. With the shift towards remote working early in the Covid 19 pandemic, many people realised the extent to which issues like sensory overload had been impacting them in the workplace. This shift also increased awareness of how dependent upon routine some people are. It is unsurprising that people who had not previously sought a diagnosis realised the need to access one to change how they work to remove barriers. Yet Wessely only frames this as misuse of services saying, “It’s not to do with medicine, it’s a cultural shift”. He frames what is fundamentally an issue of society's failure to adapt as an individual problem in the people seeking the only means available to force accommodations.
“These patients don’t want treatment just a validation for something else in their lives, a failed marriage, or their career gone wrong. The trouble is that this huge demand overwhelms the NHS’s limited resources and it now takes 24 months before anyone, even serious cases, can get an assessment.”
This makes the costs to healthcare services the disabled person's fault rather than the need for human resources departments to have proof before trusting that someone knows what accommodations they need as the issue. It is certainly not the fault of disabled people making art about their lived experiences. To suggest so is simply disablism.
Comments about neurodiversity like Wesssely’s are not uncommon. But when made in the national press by a leading UK psychiatrist with a high level of institutional influence and a history of promoting theories that favour gatekeeping and doubt, they are extremely concerning. Wessely’s primary objection is of patient groups challenging psychiatric and medical authority over their lived experiences and realising that problems that they have long struggled with have names.
By insisting that an increase in cases must be somatisation, social contagion and weakening of diagnostic criteria rather than indicative of actual levels Wesseley ignores the role that media can play in public education and the role that lived experience involvement in research plays in increased clinical understanding. His long history of this calls into question his suitability for oversight of research on trans health. There is a real danger that should Wessely view neurodivergent trans people researching and educating themselves, increased diagnosis rates or want of validation and self-determination in this way it could lead to increased measures to stop it in the form of conversion therapy and/or extreme gatekeeping.
Theoretical justifications for neglect
Wessely's claims that disability benefits or financial compensation would hamper a patient's recovery are based on the notion that such support is a form of 'secondary gains' that help to reinforce patients 'false illness beliefs,' incentivising them to remain in the 'sick role'. Both of these concepts originate in Freudian notions of hysteria, with the 'sick role' being expanded upon by functional sociologist Talcott Parsons in his work on illness behaviour. In psychosomatic disorders, a primary gain would be the experience of relief or protection from emotional pain and distress by its subconscious conversion into physical (somatic) symptoms. Secondary gains are social or personal advantages.) thought to be gained from having an illness (physical or psychological) that can perpetuate its duration. Examples of secondary gains would be attention (from friends, family, spouse etc) time off work or school, or in more contemporary arguments such as Wessely's, financial motivations. For Freud secondary gains were not exclusive to physical illness or symptoms and were applied to neurotic disorders, but more recent versions include the 'conversion' of psychological illness into a more socially acceptable less stigmatised physical illness presentation. Whilst the Freudian construct of secondary gains considered motivations to be entirely subconscious, some contemporary theory suggests it can be conscious and/or subconscious. This would be the case for exaggerated or fictitious illnesses. Whilst not previously drawn upon by Wessely there is a modern addition of tertiary gains in psychosomatic medicine. This is the idea of 'secondary gains' that benefit a third party such as a parent, spouse or medical professional (also with either conscious or unconsious motivations) but is often simply referred to as secondary rather than tertiary gain.
The biopsychosocial model considers biological, psychological and social factors potentially impacting a person’s health. There are two main versions of the model and multiple, less widely known variations some of which Simon Wessely has co-authored. The original biopsychosocial model was developed by George Engel, who specialised in psychosomatic medicine. Engel sought to develop a holistic approach to healthcare that considers social, psychological, and biological factors when theorising chronic pain, disability and illness. Whilst a holistic approach is positive this model has been criticised for philosophical flaws meaning it does not achieve its aims of holism and theoretical underdevelopment to the point that any condition can be attributed to any cause subject to clinician bias. Additionally, it has faced criticism for its justification of healthcare rationing stemming from the expansion of psychiatry and psychosomatic medicine into other areas of medicine.
Simon Wessely co-authored versions of the biopsychosocial model advocating behavioural interventions in treating postviral fatigue syndrome and ME. He also suggested its potential use for other conditions with clear biological causes that have debilitating fatigue as a symptom, including Multiple Sclerosis, Cancer and HIV. Wessely’s approach to the biopsychosocial model is clear in his work on the conditions discusssed above. The social, rather than considering social determinants of health becomes social contagion via the media or “knowing someone else with the condition”. The biological is whatever is most useful to his aims i.e. in ME merely an initial infection, with the illness maintained psychologically. Yet in PTSD a possible genetic predisposition and the psychological is central to everything (except when psychological illness is claimed). Rather than a more plausible notion that a person’s mood may impact their physical illness, management of it and ability to cope, for Wessely mental states become the original cause of either the illness itself or its severity.
Wessely’s versions of the biopsychosocial model were highly influential on the Waddell and Aylward model, the second most widely known and influential version. In 2005, Mansel Aylward retired from his role at the DWP just after approving DWP funding for the PACE trial and began working as director of the then-new UnumProvident Psychosocial and Disability Research Centre at Cardiff University. The centre, funded by UnumProvident insurance group, had close links with DWP civil servants and politicians. The DWP commissioned Mansel Aylward and Gordon Waddell, an orthopaedic surgeon and professor at the centre, for a report titled ‘The scientific and conceptual basis of incapacity benefits’, which laid the framework for the 2006 welfare reform bill, which claimed to act in the interests of sick and disabled people by helping them into the labour market. This reinforced commonly held beliefs that disabled people who are unable to work are so due to internalised negative attitudes rather than impairment, fluctuating capabilities and the inaccessible nature of much available work. When this did not sufficiently reduce the number of claimants, it was combined with Gordon Waddell and Mansel Aylward's work on the biopsychosocial model to provide a theoretical framework to justify further welfare reform through the work capability assessment and the introduction of Employment and Support Allowance in addition to more recent pushes for further welfare reform.
Aylward and Waddell’s version of the model, published in 2010, took Wessely's developments of the model even further, beyond other conditions with a fatigue element, and applied it to all disability and illnesses. Whilst both Engels's original version of the biopsychosocial model and Aylward and Wadell's version have faced strong criticism for their theoretical flaws and potential for abuse. It is the Aylward and Waddell model, with its emphasis on the psychological component above others and a more explicit behaviouralist lens of personal responsibility and blame for illness and disability severity, that is most pernicious. This version is a purposefully constructed model that serves an ideological agenda that had, and continues to have, a detrimental impact on state policy pertaining to disabled people. This model laid the theoretical groundwork for justifying increased cuts to welfare spending in line with other austerity measures and intensified the notion of work as a health outcome. The health outcome of employment was also used as justification for the DWP's funding of the PACE trial.
Concerns for Trans Research Agendas
Once the notion of a patient group lacking credibility is in the public narrative it tends to stick, especially when this is ideologically useful and easily applied to other areas where a straightforward solution is lacking. Patients with Long Covid, a condition that, whilst it can include other more measurable symptoms, often has a similar symptom profile to ME, have been subject to the same disbelief and psychiatrisation. The government Covid-19 Inquiry session on Long Covid revealed that in 2020 Boris Johnson, who was still Prime Minister at the time, wrote ‘Bollocks this is Gulf War Syndrome Stuff' on an expert report describing the condition and later made similar remarks on WhatsApp messages. Simon Wessely has published on Long Covid, been involved in Long Covid research webinars and chaired panel discussions for the REACT-Long Covid research study. Despite the widely discredited PACE trial, Simon Wessely has suggested functional disorder explanations and behavioural modification-based treatments for Long Covid research. He also led a research project into the psychological impact of Covid-19 on healthcare workers. The published study found the incidence of PTSD and other mental health disorders in healthcare workers resulting from the pandemic to be lower than found in other UK studies. This study has been criticised for the timings of the interviews (post-vaccination lower death rates and lifting of social restrictions), consideration of only three possible clinical disorders and non-inclusion of burnout, stress and moral injury, as well as a lack of longitudinal data.
We hope this history of serving ideological interests has not played a role in Wessely's appointment to the Young People’s Gender Dysphoria Research Oversight Board. However, given the widespread sharing of pseudoscientific social contagion theories and the discredited ROGD theory by anti-trans actors, including clinicians, and the poor quality of the Cass review, we are concerned about the quality and direction that research could take with Wessely's involvement and oversight. We view Wessely’s appointment in the context of the history of partisan appointments of others in positions of involvement and oversight in developing guidelines for gender care that have already created harmful levels of epistemic injustice. Transphobic actors also have a habit of weaponising sanism against trans people and patients, sometimes with eugenicist undertones. They also often exhibit broader aspects of disablism.
There appears to be a pattern of NHS bodies being populated by psychiatrists with a history of transphobia, institutional harm and undermining of patient groups. There is also a pattern of a lack of transparency in such appointments and in research practices and oversight. Trans Safety Network has previously reported on the appointment of anti-trans author and commentator Dr Az Hakeem to the NHS England Gender Dysphoria working group that commissioned the NICE evidence reviews undertaken in 2020. We have also highlighted Carl Heneghan’s involvement with the same working group. Heneghan appears to be an anti-vaccine activist who shared misinformation about the COVID-19 pandemic.
Combined with the recent revelation discovered via FOI requests that Dr Hilary Cass was selected from a group of one to chair the review of children and young people’s gender identity service, we are concerned about the selection process of those overseeing trans healthcare policy. Dr Levy was also selected from a group of one to conduct his review of adult trans services. Dr Cass has also spoken about alleged personal safety concerns, disparaging an entire patient community with the alleged actions of a minority. Whilst any threats are unacceptable, there is a pattern of researchers who are challenged by the groups impacted by their harmful research claiming persecution by patient activists. Wessely’s history of pseudoscientific theorising, use of social contagion theory, undermining patient activism, and criticisms of NHS bodies that move away from his ideas means we must be vigilant and closely monitor the outcomes of his appointment to this role.
In Trans Safety Network’s opinion, there is a danger of Simon Wessely claiming that being trans is a form of socially contagious psychosomatic illness. The danger with this would be framing parental and clinical doubt as being in a child’s best interest. In trans and gender diverse youth, disbelief of this sort is linked to abusive conversion practices, such as cutting children and young people off from external support networks or otherwise attempting to suppress gender exploration. We need transparency in trans healthcare research as well as in selection processes.