Simon Wessely

Sir Simon Charles Wessely M.A., M.Sc., M.D., F.R.C.P., M.R.C.Psych., (born 23 December 1956) is a British Professor of Psychiatry at King’s College London and a Consultant Liaison Psychiatrist at King’s College and the Maudsley Hospitals. He became director of the Chronic Fatigue Research Unit at King's College London in 1994 and has since been one of the most influential researchers in the field of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Wessely helped develop the cognitive behavioral model (CBM) of chronic fatigue syndrome, a rehabilitation-based model in which unhelpful thoughts and avoidance behavior are believed to perpetuate the symptoms of ME/CFS. Wessely suspects ME/CFS to be a "general disorder of perception." Although Wessely has received many honours for his work and services, his research is considered controversial and has been criticized by ME/CFS expert clinicians, researchers and patients.

= Biography = Simon Wessely is the son of Rudolf Wessely, one of the Jewish children who managed to escape the Nazi regime through the help of Nicholas Winton. He studied medicine at the universities of Cambridge and Oxford, epidemiology at the London School of Hygiene and psychiatry at the Maudsely Hospital in 1984. While working at the Maudsely, Wessely developed an interest into medically unexplained symptoms and chronic fatigue syndrome. He became Director of the Chronic Fatigue Research Unit at King's College London in 1994 and of the Gulf War Illness Research Unit in 1996.

Wessely has published approximately 600 papers and written books about chronic fatigue syndrome, the history of military psychiatry and clinical trials in psychiatry. From 2014 to 2017, Wessely was the elected president of the Royal College of Psychiatrists. He is married to Clare Gerada who was chairperson of the Council of the Royal College of General Practitioners from 2010 to 2013. Wessely has been honoured by the Advisory Committee on Clinical Excellence Awards ; the Royal College of Physicians ; the American Psychiatric Association ; the Association of British Neurologists and more recently by Oxford University. In 2011 he was awarded the John Maddox prize for standing up for science. Wessely was knighted in 2012 and became the World's first Regius Professor in Psychiatry in 2017. Wessely considers his greatest achievement to be helping to show that chronic fatigue syndrome can be treated.

=Research into ME/CFS =

Chalder Fatigue Scale
Working at the Maudsley Hosptial in the 1980s, Wessely developed an interest into patients with unexplained chronic fatigue. According to Wessely, these patients were then frequently sent to neurologists. The prevailing idea was that something might be wrong with their muscles, although tests usually came back normal. One of Wessely's first studies reported that these chronically fatigued patients resembled patients suffering from an affective disorder (eg depression) rather than those with a neuromuscular illness. It was during this study that Wessely and colleagues developed the Chalder Fatigue Scale, a short questionnaire that is frequently used in research into fatigue and has been translated into multiple languages.

CFS diagnostic criteria
In the late 1980s Wessely called for the adoption of operational criteria for CFS. He criticized the Holmes criteria for having "overzealous physical and psychological exclusions" and requiring too many symptoms. Wessely subsequently became one of the authors of the British research criteria for CFS, known as the Oxford criteria, and one of the members of the International Chronic Fatigue Syndrome Study Group that helped formulate the Fukuda criteria. The Oxford criteria are widely regarded as the "least restrictive", possibly diagnosing patients with idiopathic chronic fatigue or fatigue from other conditions as CFS. The Fukuda criteria later became the most commonly used criteria for both the diagnosis and research of CFS.

Neurasthenia, depression and burnout
Wessely has argued that chronic fatigue syndrome (CFS) has many similarities to atypical depression and burnout, which are also characterized by fatigue symptoms. According to Wessely, “the feeling that CFS is but a synonym for better known psychiatric disorders refuses to go away, because it is partly true.” The main difference, according to Wessely, is believed to be one of attribution, as CFS patients often think their illness is caused by an external factor such as a virus. In his publications Wessely argued that external attributions lessen guilt and avoid blame, but increase the risk of long-term disability.

In an article titled “Old wine in new bottles” he highlights the resemblances with neurasthenia, a fatigue diagnosis that was popular at the turn of the 20th century but has since fallen out of use in most of the Western world. According to Wessely both neurasthenia and CFS should be seen as “culturally sanctioned expressions of distress” for those uncomfortable with the psychological aspects of illness. Within the CFS label, ill health can be blamed on environmental threats and unwelcome features of modern life. Wessely reasoned that CFS is a “mirror of society”, “not simply an illness but a cultural phenomenon and metaphor of our times.”

According to Wessely, “some of the modern impetus to 'allow' a specific chronic fatigue syndrome arises from the various compensation and social insurance schemes operating in developed countries.” He has argued that the CFS label makes it easier to allow reimbursement or compensation for fatigue, pain and misery, claiming that “If the chronic fatigue syndrome did not exist, our current medical and social care systems might force us to invent it.”

A disorder of the perception of effort
In several publications, Wessely wrote that he suspects CFS to be a general disorder of perception, in particular the peception of effort. In an article in the Encyclopedia of Stress, for example he wrote: "'One theme that emerges from the literature of all the fatigue syndromes is the possibility of a general disorder of perception, perhaps of both symptoms and disability. At the heart of this misperception lies the sense of effort. CFS patients clearly experience increased effort in everyday physical and mental tasks.”"

Epidemiology of CFS
With his training in clinical epidemiology at the London School of Hygiene, Wessely was able to perform one of the first large epidemiological studies of CFS in the United Kingdom. His study in primary care indicated no socioeconomic gradient for CFS, suggesting the excess of upper social classes in specialist clinics is due to selection bias. The prevalence of CFS in the 18- to 45-year age group was estimated at 2.6% using the CDC's Fukuda criteria, more than ten times as large as what later studies would report. The high prevalence could be due to a limited amount of laboratory screening tests, which was restricted due to cost. Wessely also worked on epidemiologic studies to determine the prevalence of CFS in children, the prevalence of CFS in Brazil and the relationship between fatigue and mental health problems. Using data from the British birth cohort, Wessely reported that a psychiatric disorder increased the chance of a self-reported diagnosis of CFS/ME later in life. With data from the Clinical Record Interactive Search (CRIS), Wessely and colleagues reported a more than sixfold increase in suicide-related mortality in patients with CFS, however this was calculated from only five deaths by suicide.

Cognitive behavioral therapy
In the late 1980s Wessely and colleagues developed the cognitive behavioral model (CBM) of chronic fatigue syndrome, a rehabilitation-based model in which unhelpful thoughts and avoidance behavior are believed to perpetuate the symptoms of ME/CFS. This model forms the rationale for the use of cognitive behavioral therapy (CBT), one of the most frequently prescribed treatments for CFS, and graded exercise therapy (GET). With CBT, CFS patients are encouraged to take on a pragmatic approach, to disregard what might have caused their illness and focus on the behavioral factors that are posited to perpetuate their symptoms. Patients are encouraged to no longer view the syndrome as a chronic and incurable disease and are told they can improve but that they themselves have a significant role to play in this. With CBT thoughts such as the belief that symptom flares indicate damage or an underlying disease process are regarded as "catastrophizing" or unhelpful beliefs, and these are challenged. Bodywatching, also known as symptom focusing, a heightened awareness to bodily sensations, is explained to be counterproductive. The main emphasis of CBT however is on reversing "maladaptive avoidance behavior". The aim is to tackle “the handicapping, stimulus-driven cycle of CFS, in which symptoms are always a signal to rest, and to replace previous sensitization by tolerance.”   With CBT, patients are instructed to increase their activity level time-contingently and to no longer respond to symptom increases by resting. This usually involves a gradual increase in exercise such as walking or swimming.

In 1997, Wessely, Deale and colleagues conducted a randomized controlled trial which indicated that CBT is more effective in relieving CFS symptoms than relaxation therapy,  although the five year follow up reported a null effect. A number of other CBT trials for chronic fatigue syndrome have reported positive findings, although some have reported no overall effect. CBT became recommended as an evidence-based treatment for CFS by several health authorities, followed by the CDC and the UK's National Health Service. More recently the effectiveness of CBT in CFS has been criticized for relying on subjective outcomes in unblinded studies. Objective outcomes which are less prone to biases show no improvements following CBT. In many patient surveys, respondents indicated to have been harmed by the graded activity approach in CBT. Wessely however has defended the methodogical weaknesses of CBT trials, including the PACE trial, and emphasized that there is “no particular reason why graded exercise carried out under appropriate professional supervision should be harmful.”

PACE trial
Simon Wessely was involved in the PACE trial, a large but controversial study that investigated the effectiveness of CBT, GET and adaptive pacing therapy (APT) in a sample of more than 600 CFS patients. Wessely was center manager for one of the PACE trial centers, a member of the PACE Trial Management Group, provided specialist medical care (SMC) to PACE trial patients and "advice about design and execution" of the trial, and according to the main PACE trial publication, commented on "an early draft" of the publication. Wessely's earlier contributions to CFS research were highly influential in the setup of the PACE trial; it used the Chalder Fatigue Scale as one of the primary questionnaires to assess impairment and recovery, the Oxford criteria for CFS to select patients, while the cognitive behavioral model was the underlying theory described in the therapist and patient manuals.

The PACE trial has been criticized for multiple methodological faults. An open letter signed by more than 100 prominent ME/CFS experts including researchers and clinicians has called for “an independent re-analysis of the individual-level trial data, with appropriate sensitivity analyses." Wessely however has repeatedly defended the PACE trial, calling it a "thing of beauty." In a blog post in which he described the PACE trial as a "landmark in behavioral complex intervention studies", he was criticized for failing to disclose his full role in the trial. Wessely then responded claiming he was not aware of being a center leader.

Science Media Centre
Wessely is on the board of trustees of the Science Media Centre (Company number 07560997), which has defended the results of the PACE trial to the media.

Biomedical research
Wessely has conducted a multitude of biomedical studies into CFS, often putting popular ideas to the test. His research team reported that ordinary infections do not increase the risk of CFS, although there was an increased prevalence following viral meningitis and other more serious infections. Wessely and colleagues also demonstrated that there was no connection between the xenotropic murine leukemia virus-related virus (XMRV) and CFS.

Wessely's research team has studied type 2 cytokine-producing cells, human leukocyte antigen (HLA)-genes , antinuclear autoantibodies (ANA) , and VP-1 antigens suggestive of enteroviral infection in patients with CFS. His research team looked into growth hormone and cortisol abnormalities   in patients with CFS and conducted a randomized controlled trial of hydrocortisone treatment, which indicated reduced fatigue levels in the short term. Wessely reported on reduced vitamin B-status, an increased prevalence of coeliac disease and autonomic dysfunction in patients with CFS compared to controls.

His research team reported that, contrary to popular thought, there is no indication of hyperventilation in patients with CFS and that the stereotype of CFS sufferers as perfectionists with negative attitudes toward psychiatry is not supported by scientific investigation. Contrary to his own expectation, Wessely demonstrated that there is significant correlation between low blood pressure and fatigue and that CFS patients have often reduced their alcohol consumption, in contrast to patients with affective disorders.

Medically unexplained symptoms (MUS)
In an influential 1999 article, Wessely and colleagues stated that somatic syndromes, which in their view included CFS, are an “artefact of medical specialisation.” They argued that there’s a large population of patients with multiple medically unexplained physical symptoms (MUS or MUPS) and that it’s mostly the specialist they see that determines their diagnosis. When seen in gastroenterology patients might be diagnosed with irritable bowel syndrome, in rheumatology with fibromyalgia, in cardiology with atypical chest pain, in neurology with tension headache and in an infectious diseases clinic with chronic (postviral) fatigue syndrome. Wessely and colleagues stated that there’s a large overlap in case definitions of these illnesses and that patients often meet multiple diagnostic criteria. They have argued that these symptom-based criteria do not “cleave nature at the joints” and these should best be viewed together as one functional somatic syndrome. In support of this view, Wessely and colleagues argued that these diagnoses have multiple commonalities such as a predominance of women, a history of childhood trauma or abuse, comorbid emotional disorders and a responsiveness to antidepressants and psychological interventions, although research exists that disputes that these are common in CFS.

Wessely’s research reported that MUS are common and account for approximately half of patients referred to a variety of specialties. Little evidence was found for the somatization concept. Patients who report a greater number of physical symptoms are also more likely to report symptoms of anxiety and depression, indicating that the former are not associated with a denial of psychological distress. Wessely en colleagues did report that patients with MUS often had a parent in bad health, a relationship that “may reflect a learned process whereby illness experience leads to symptom monitoring.”  According to Wessely, characterizing MUS as purely psychological complaints is likely to be counterproductive. Exposure to such attitudes “may paradoxically reinforce their determination to maintain the sick role, since to do otherwise would confirm the doctor’s own view – that it was ‘all in the mind’ after all.” Instead Wessely advises a holistic approach using the biopsychosocial model.

Other researchers have questioned the use of a broad MUS-classification as it might hamper research into the underlying pathology of poorly understood conditions.

= Other Research =

Gulf war syndrome
Wessely is a consultant advisor in psychiatry to the British Army and has done extensive research into the health of soldiers deployed in war zones. In an influential 1999 study, published in the Lancet, Wessely performed the UK’s first systematic epidemiological study on veterans suffering from Gulf War Syndrome. Wessely’s team compared 4246 randomly selected British Gulf War veterans with servicemen deployed to the 1990s Bosnia conflict and a group of soldiers who served during the Gulf War but were not deployed there. The study showed that Gulf war veterans were more likely to report each one of the dozens of symptoms that were assessed. “Whatever the symptom, the rate was at least twice as high in the Gulf cohort as in either the non- deployed cohort or the Bosnia cohort.” According to Wessely this indicated that there was a Gulf War health on soldiers deployed there but no evidence of a Gulf War syndrome, a unique constellation of signs or symptoms. Instead the symptoms reported show a large overlap with other medically unexplained complaints such as chronic fatigue syndrome in civilians.

Wessely has pointed out that unexplained illnesses have repeatedly been reported in soldiers deployed to combat and that these are often related to the particular nature of the conflict. Soldier’s heart for example arose out of concern that the straps securing the backpacks of soldiers in the American Civil War were compressing the region around the heart while shellshock took its name from the presumed effects of concussion caused by bombardments. Similarly Wessely has argued that the Gulf War Syndrome arose out of concerns about the use of vaccinations, chemical agents and other biological weapons. According to Wessely biological factors such as exposure to depleted uranium, poorly explains the ill health of Gulf War veterans. Self-reported exposure to multiple vaccinations initially showed a relationship with poor health, but there was no association when vaccinations were recorded objectively from medical records. Wessely’s research also indicated that the Gulf War health effect could not be explained by stress or psychological disorders as there was no such health effect with soldiers deployed to the Iraq war, which was a longer, harder, and more dangerous campaign.

Wessely has argued that the story of Gulf War ill health began with some soldiers reporting symptoms but that these were amplified by concerns towards possible exposure to Saddam Hussein chemical agents. Wessely argues that the symptoms and concerns were taken up by the media which it shaped into a particular syndrome. According to Wessely “the transmission of rumour was a significant part of the very construction of the condition itself.”

Resiliance
Wessely has written about many other subjects including peer-review, the effectiveness of antidepressants , the rise of counselling and the stigma attached to psychiatric illnesses. One common theme in his writing is resilience. Wessely emphasizes that adversity is part of human experience, that not everyone exposed to adversity becomes a victim and that “we should resist the temptation to redefine our identities solely in terms of what has been done to us.” In a provocative paper titled “going to war does not have to hurt” Wessely argued that deployment to armed conflict does not necessarily result in ill health, claiming that soldiers deployed to the Iraq war do not have an increase in psychological symptoms. Wessely has been critical of the concept of post-traumatic stress disorder (PTSD) because it assumes that the cause of the disorder is known. According to Wessely “the view that the determinants of PTSD are to be found solely in the nature of the stressor cannot be sustained.” Wessely has also criticized the use of psychological debriefing and screening for depression, arguing these techniques are not effective and that resources should better devoted to patients with known psychiatric illness currently underserved.

= Controversy =

Emphasis on psychosocial factors
While Wessely’s work has been influential, it is also considered to be controversial. Patients and researchers have argued that he overemphasizes psychological, social and cultural elements and downplays the organic factors in poorly understood illnesses. Wessely for example has argued that illnesses such as multiple chemical sensitivities and electromagnetic hypersensitivity reflect psychological disturbances and often mask psychiatric illnesses. In regards to symptoms attributed to allergies, Wessely wrote that some patients have developed “a lifestyle around their illness, with their own journals, clinics, and self help groups."

Wessely suggested that psychological factors were responsible for ill health reported after contamination of the water supply with aluminium sulphate in Camelford, England in 1988. Wessely wrote that “the most likely explanation of the Camelford findings is that the perception of normal and benign somatic symptoms (physical or mental) by both subjects and health professionals was heightened and subsequently attributed to an external, physical cause, such as poisoning.” A different research team found evidence of physical harm.

The UK government however formally apologized in 2013, 25 years later, to those whose health was affected by the water supply contamination. Calls for a public inquiry have continued. Similarly Wessely has argued that ill health reported following the collapse of the Twin Towers on 9/11, is a “consequence of an ideology that tells us that our physical environment is responsible for most of our bodily discomforts and ills.”

Iatrogenesis and ME
Wessely has criticized doctors who favor a biomedical approach to poorly understood illnesses. According to Wessely “there is a considerable degree of iatrogenesis in the rise of these conditions.” Wessely has argued that diagnosing patients with myalgic encephalomyelitis (ME) as if it was an incurable and chronic condition can act as a self-fulfilling prophecy. He warned that campaigning for more awareness of ME in adolescents might have increased the incidence of young people with such presentations. In contrast to CFS, Wessely has argued that ME is not an accepted medical diagnosis with established diagnostic criteria and that this diagnosis should therefore be interpreted as a belief system - “a person has ME when they say they do.” According to Wessely and colleagues “understanding of the postviral fatigue syndrome has been hindered by doctors who suffer from the condition also researching it.”

Death Threats
Wessely has reported in interviews that he has received multiple death threats from ME activists who dislike his research into psychological elements of chronic fatigue syndrome. He has claimed that “it’s safer to insult the Prophet Mohammed than to contradict the armed wing of the ME brigade.”   Because of the death threats, Wessely has moved his research interest to studies of Gulf war syndrome and other conditions linked to war. “I now go to Iraq and Afhanistan, where I feel a lot safer” he stated in the press. In 2011 Wessely was awarded the John Maddox Prize for Standing up for Science for the way he dealt with intimidation and harassment during his research of ME/CFS, a decision that was contested.

Anti-psychiatry stigma
Wessely has argued that much of the passionate criticism of his work on chronic fatigue syndrome is driven by anti-psychiatry sentiments, claiming that “at the heart of the ME/CFIDS movement is the rejection of any form of psychological causation or treatment. Being referred to a psychiatrist is being blackballed, being on trial or imprisoned for a crime I didn’t do.” According to Wessely, some of the patients who campaign for ME and against the biopsychosocial model of CFS, have an obsession about psychiatry. “With these people, it isn’t that they don’t want to get better but if the price is recognising the psychiatric basis of the condition, they’d rather not get better.” Similarly, Wessely has argued that “the drive to find a somatic biomarker for chronic fatigue syndrome is driven not so much by a dispassionate thirst for knowledge but more by an overwhelming desire to get rid of the psychiatrists.” As president of the UK's Royal College of Psychiatrists, Wessely launched the Anti-BASH (#BantheBash) campaign to stop stigma attached to psychiatry.

Ean P.
Wessely was involved in the controversial management of a child with severe ME named Ean P. who was taken away from his parents to follow rehabilitative treatments. The parents of the child claimed that the medical carers of Ean had engaged in professional misconduct, an allegation that was not fully confirmed by subsequent enquiries. As a psychiatrist who investigated Ean, Wessely had argued that he did not have a primary organic illness but a psychological illness that required intensive rehabilitation.

Page vs. Smith
Wessely was also consulted as an expert in a notorious legal case, Page vs Smith, where a patient reported a relapse of a chronic fatigue syndrome after a car crash. Wessely argued that the patients relapsed not because of any neurological or immunological process but because of his vulnerability to psychiatric injury, as the person had a history of previous psychological disorder.

Gremlins at the BMJ
In the year 2000 one of Wessely’s papers in the BMJ was criticized by Martin Bland, professor of medical statistics, for having multiple statistical flaws. Wessely admitted the mistakes but said his original version did have the correct analysis and figures and that the errors seem to have happened when the manuscript was being published by the journal. Wessely’s account was confirmed by Norwegian researcher Jon Håvard Loge who had received a copy of the original version that did not have the statistical mistakes. Wessely joked that “somewhere between the analysis and the printed copy we have been attacked by gremlins.” Editor of the BMJ Richard Smith however pointed out that the mistake could also have happened when one of the reviewers asked for a change in presentation of the figures, and the authors not making this change correctly.

= Research studies related to ME/CFS=
 * 1990, Old wine in new bottles: neurasthenia and 'ME'
 * 1997, Cognitive behavior therapy for chronic fatigue syndrome: a randomized controlled trial (Full text)
 * 1997, Chronic fatigue syndrome. A practical guide to assessment and management
 * 1999, Personality and social attitudes in chronic fatigue syndrome.
 * 2000, Diagnosis of psychiatric disorder in clinical evaluation of chronic fatigue syndrome
 * 2001, Long-Term Outcome of Cognitive Behavior Therapy Versus Relaxation Therapy for Chronic Fatigue Syndrome: A 5-Year Follow-Up Study (Full text)
 * 2005, The Placebo Response in the Treatment of Chronic Fatigue Syndrome: A Systematic Review and Meta-Analysis - (Full text)
 * 2005, Association of chronic fatigue syndrome with human leucocyte antigen class II alleles - (Full Text)
 * 2007, A Defence of the Randomized Controlled Trial in Mental Health
 * 2009, Chronic fatigue syndrome: identifying zebras amongst the horses. (Full text)
 * 2010, Failure to detect the novel retrovirus XMRV in chronic fatigue syndrome.See: XMRV
 * 2016, Mortality of people with chronic fatigue syndrome: a retrospective cohort study in England and Wales from the South London and Maudsley NHS Foundation Trust Biomedical Research Centre (SLaM BRC) Clinical Record Interactive Search (CRIS) Register The study has been criticized by James Coyne.

=Books=
 * Wessely S, Sharpe M, Hotopf M. Chronic Fatigue and its Syndromes. Oxford University Press, 1999.
 * Everit BS, Wessely S. Clinical Trials in Psychiatry. Oxford University Press, 2003.
 * Jones E, Wessely S. Shell Shock to PTSD: Military Psychiatry from 1900 to the Gulf War. Psychology Press, 2006.

=Talks, interviews, and newspaper articles=
 * 1994, Is cancer all in the mind?
 * 1993, Letter to Mansel Aylward at the Department of Social Security complaining about neurological classification of ME/CFS
 * 2006, Something old, something new, something borrowed, something blue: The true story of Gulf War Syndrome
 * 2010, Chronic fatigue syndrome
 * 2011, Interview with Professor Simon Wessely - The Times
 * 2014, Psychiatrists and the pharma industry are to blame for the current ‘epidemic’ of mental disorders

=Online presence=
 * PubMed - Simon Wessely
 * Twitter
 * Website

=Criticism=

Articles

 * 1999, Denigration by Design Update (Vol 2): A Review of the Role of Simon Wessely in the Perception of ME 1996-1999 - Margaret Williams
 * 2003, THE MENTAL HEALTH MOVEMENT: PERSECUTION OF PATIENTS? A consideration of the role of Professor Simon Wessely and other members of the "Wessely School" in the perception of Myalgic Encephalomyelitis (ME) in the UK. Background Briefing for the House of Commons Select Health Committee - Malcolm Hooper
 * 2003, Notes on the involvement of Wessely et al with the Insurance Industry and how they deal with ME/CFS claims


 * 2011, Dr. Ian Gibson on BBC radio: Prof Simon Wessely has been blocking proper research into ME for years
 * 2012, Letter from Countess Mar to Professor Simon Wessely
 * 2013, Professor Sir Simon Wessely – Right or Wrong?
 * 2013, Simon Wessely's Big Shift? CBT Icon Calls For Big Rituximab Trial

Quotes

 * Simon Wessely in his own words - compiled by M.E. Action UK
 * Wessely's Way: Rhetoric or reason? - Margaret Williams and Malcolm Hooper
 * Wessely's Words Revisited
 * Simon Wessely Research & Related Quotes

=See Also=
 * Intimidation and bullying of PACE trial critics
 * PACE trial
 * Trudie Chalder
 * Esther Crawley
 * Claire Gerada
 * Rona Moss-Morris
 * Michael Sharpe
 * Peter White
 * Wessely school

=References=