Simon Wessely Research & Related Quotes

[Valentijn]

Background Information
This is the first in what will hopefully become a series of threads with quotations from various doctors, researchers, and whoever else, which are relevant to ME/CFS. The purpose of these threads is to create a clear record of what has been said, to 1) edify patients who are not sure what their doctor really thinks, 2) provide a context to help clarify vague statements, and 3) to have an easy-access repository of reliable quotations on hand when needed.

It is hoped that eventually there will be a better format for these pages, namely in a wiki, where pages can be created in a collaborative manner, researched for accuracy, discussed in a manner that does not detract from the accessibility of the quotes themselves, and deleted or edited to ensure accuracy.

Contributors can elect to delete their own posts after their suggested quote has been added to this post, or discussion about the quotes has been resolved to everyone's satisfaction. This might help to reduce spam to make active discussions more accessible, but is of course completely optional.

As an additional note, I think direct quotes are the strongest. In many cases these papers are saying "People say this" and "The CBT model of CFS says that", which is not so useful. Although the authors are basically endorsing those statements by citing them in their papers/books/etc, they can also just say they're summarizing what other people say and that they don't necessarily agree with all of it. These authors' own conclusions are much more effective.

The PACE trial is a very large (n=640) and well conducted (1 year follow-up rate of 95%) multicentre randomised study, funded by the Medical Research Council, Department of Health and Department of Work and Pensions, and ironically also the Scottish Chief Scientist’s office, and one of whose major centres included Edinburgh.
Smith Ch, Wessely S. Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. JNNP 2012.

Finally, it should be noted that our conclusions are primarily based on common sense, in the absence of a sound evidence base.
Huibers M, Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 2006: 36


BIOLOGICAL INVESTIGATION AND TREATMENT
Ideally a behavioural programme [for CFS patients] should be individually tailored, with agreed targets appropriate to the degree of initial disability. However, it is likely to involve the following features: . . . 7. No further visits to specialists or hospitals unless agreed with therapist.
Wessely S, David A, Butler S, Chalder T. The Management of the Chronic Postviral Fatigue Syndrome. J Roy Coll General Practitioners 1989; 39: 26-29.

. . . such 'inappropriate' referrals to physicians can lead to extensive physical investigation that may perpetuate the symptom patterns of physical attributions.
Powell R, Dolan R, Wessely S. Attributions and self esteem in depression and the chronic fatigue syndrome. J Psychosomatic Res 1990; 34: 665-673.

However, the simple combination of history, examination and basic tests will establish those who require further investigation. In the majority this simple screen will be normal, and over investigation should be avoided. Not only is it a waste of resources, it may not be in the patients' interest, and may reinforce maladaptive behaviour in a variety of ways.
Wessely S. Chronic Fatigue Syndrome. J Neurol Neurosurg Psychiatry 1991;54; 669-671.

Further investigation of chronic fatigue in primary care shows that history taking and physical examination are more useful than laboratory tests in the assessment of chronic fatigue, and the doctor is most likely to presume a psychosocial cause.
Lewis G, Wessely S. The Epidemiology of Fatigue: More Questions than Answers. J Epidem Comm Health 1992; 46; 92-97.

Thus epidemiological and clinical studies of persistent fatigue in primary care conclude that the symptom is common, usually associated with psychosocial variables, and that detailed physical investigation is rarely indicated.
Lewis G, Wessely S. The Epidemiology of Fatigue: More Questions than Answers. J Epidem Comm Health 1992; 46; 92-97.

Whatever the label, all agree that physical investigations [of fatigue] are rarely helpful, except in certain groups such as the elderly.
Wessely S. The epidemiology of chronic fatigue syndrome. Epidemiologic Reviews 1995; 17:139-151.

Our results add to the growing number of studies confirming the lack of utility of anything other than the most basic physical investigations in diagnosing chronic fatigue, especially in this age group (18 through 45 years).
Wessely S, Chalder T, Hirsch S, Wallace P, Wright D. The epidemiology of chronic fatigue and chronic fatigue syndrome - a primary care study. Am J Public Health 1997:87:1449-1455

The role of antidepressants remains uncertain but may be tried on a pragmatic basis. Other medications should be avoided.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

In our experience either agreement among all those treating the patient or suspension of competing models of treatment is necessary.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Reports from specialist settings have shown statistically increased rates of abnormal results on tests for parameters such as antinuclear factor, immune complexes, cholesterol, immunoglobulin subsets, and so forth. These are encountered only in a minority, and are rarely substantial. Their significance is for researchers rather than clinicians, and we feel that routine testing for such variables is more likely to result in iatrogenic harm than good.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

The problem of when or if to ask a specialist physician for help in the assessment of possible CFS often concerns primary care physicians. We do not believe this should be routine, as the primary care physician remains the mainstay of effective management.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Several other therapies have gained preliminary support in clinical trials including magnesium injections, immunoglobulin infusions and fish oil. None of these agents have been convincingly demonstrated to be efficacious. Such treatments may be expensive and even harmful and distract both patient and doctor from efforts at rehabilitation, which at present appear more likely to be effective in the longer term.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Patients should be discouraged from pursuing unproven treatments unless they are part of a carefully conducted clinical trial.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

In general, CFS patients tend to be high users of medical care, and often consume excessive amounts of time in consultations.
Deale A, Wessely S. Patients' perceptions of medical care in chronic fatigue syndrome. Soc Sci Med 2001; 52; 1859-1864

. . . they may undergo extensive investigation and medical treatment, which may not only be inappropriate but also hazardous. There is evidence that iatrogenic factors such as inappropriate information, overinvestigation, and overtreatment are common in the management of patients with medically unexplained symptoms, and avoidance of these factors forms the mainstay of most advice on their management.
Reid S, Hotopf M, Jackson M, Wessely S. Medically unexplained symptoms in frequent attenders of secondary health care: retrospective cohort study. Br Med J 2001;322;767-769

The need to rule out an organic disorder must also be balanced with the potential adverse consequences of continued investigation-seeking.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

A careful history and examination should preclude the need for all but a minimum of investigations in patients presenting with chronic fatigue and it should be remembered that there is no diagnostic test for CFS.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

Special investigations should be conducted only if specifically indicated as they may paradoxically lead to an increase in concern about the possibility of abnormal results, as well as having the potential to result in iatrogenic harm themselves.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

Although many other drug treatments have been evaluated in the management of chronic fatigue syndrome, there is as yet insufficient evidence to recommend their use routinely.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

In patients with a long history of severely impaired functioning, or who have proven consistently resistant to treatment, management is essentially supportive with infrequent but regular contact. The aim with this approach is to at least reduce further deterioration and limit unnecessary or repeated investigations and treatments.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

[From Table] Recommended investigations for the fatigued patient.
Routine investigations: Full blood count, Erythrocyte sedimentation rate or C-reactive protein, Urea and electrolytes, Thyroid function tests, Urine protein and glucose.
Special investigations: Epstein-Barr virus serology, Toxoplasmosis serology, Cytomegalovirus serology, Human immunodeficiency virus serology, Chest X-ray, Creatinine phosphokinase, Rheumatoid factor, Cerebral MRI (for demyelination).
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

In individuals with fatigue lasting more than 6 months, physical examination, basic laboratory tests (full blood count, ESR, electrolytes, liver and thyroid function) and a good psychosocial history and examination will usually establish the diagnosis. Unless physical or laboratory examination reveals significant abnormalities, the yield from further, sophisticated tests is low and there is a risk of iatrogenic injury.
Wessely S, Chronic fatigue syndrome. Psychiatry 2003: 2; 20-23

[From Chart] Diagnosis of chronic fatigue: relative contribution of physical and psychological investigations. Physical examination and laboratory tests (8.5%), Psychiatric examination (73.5%), Neither (18%).
Wessely S, Chronic fatigue syndrome. Psychiatry 2003: 2; 20-23

This paper proposes that well-intentioned actions by medical practitioners can exacerbate or maintain medically unexplained symptoms (MUS)—i.e. physical symptoms that are disproportionate to identifiable physical disease. The term is now used in preference to ‘somatization’.
Page L, Wessely S. Medically unexplained symptoms: exacerbating factors in the doctor-patient encounter. J Royal Soc Medicine 2003: 96: 223-227

Consequently a patient who sees several specialists may receive conflicting messages. The expert consensus is that, once an organic cause for symptoms has been excluded, further examination and investigation should only be initiated if a new symptom develops.
Page L, Wessely S. Medically unexplained symptoms: exacerbating factors in the doctor-patient encounter. J Royal Soc Medicine 2003: 96: 223-227

A further difficulty is that, if enough investigations are performed, minor and irrelevant abnormalities will be detected and themselves become hypothesis-generating.
Page L, Wessely S. Medically unexplained symptoms: exacerbating factors in the doctor-patient encounter. J Royal Soc Medicine 2003: 96: 223-227

At the very least, doctors in all clinical specialties must be wary of causing physical harm by unwarranted investigations and treatments.
Page L, Wessely S. Medically unexplained symptoms: exacerbating factors in the doctor-patient encounter. J Royal Soc Medicine 2003: 96: 223-227

. . . . GPs can be confident that most organic causes of fatigue will be detected by a good history, physical examination, and a limited number of blood tests.
Harvey S, Wessely S. Tired all the Time: Can new Research on Fatigue Help Clinicians? Br J Gen Practice 2009: 59: 93-100

There are numerous cautionary tales of individuals who have suffered from delayed or missed diagnoses of serious illnesses due to under investigating of fatigue. Yet if the search for unlikely 'zebra' causes of fatigue goes on too long, the risk of iatrogenic harm increases and the opportunity for early focused treatment of CFS may be lost.
Harvey S, Wessely S. Tired all the Time: Can new Research on Fatigue Help Clinicians? Br J Gen Practice 2009: 59: 93-100

 

[Valentijn]

PROGNOSIS AND OUTCOME

Outcome depended more on the strength of the initial attribution of symptoms to exclusively physical causes. . . .
Butler S, Chalder T, Ron M, Wessely S. Cognitive Behaviour Therapy in the Chronic Fatigue Syndrome. J Neurol Neurosurg Psychiatry 1991; 54; 153-158

. . . the only determinant of outcome in this condition [CFS] is strength of belief in a solely physical cause. . . .
The National Archives of the UK: Public Record Office (PRO) BN 141/1, 1 October 1993 Wessely to Aylward, pp 17-18.

It [a neurological listing for CFS] is also a most unfortunate message to send sufferers. It colludes with the erroneous belief that this is a severe disorder of neurological functioning, for which there is little effect [sic] treatment, and a poor prognosis. It will discourage any sensible efforts at rehabilitation. As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it will itself contribute to disability and poor outcome.
The National Archives of the UK: Public Record Office (PRO) BN 141/1, 1 October 1993 Wessely to Aylward, pp 17-18.

The prognosis for those who aquire the label of "ME" is at the moment poor. The only three prognostic studies conducted to date all suggested that poor prognosis, and failure to improve, is closely related to illness beliefs of a solely physical origin to symptoms.
The National Archives of the UK: Public Record Office (PRO) BN 141/1, October or November 1993 McGrath Summarizing Talk by Thomas and Wessely, pp 6-8, 10.

Most cases can be expected to improve with time.
The National Archives of the UK: Public Record Office (PRO) BN 141/1, October or November 1993 McGrath Summarizing Talk by Thomas and Wessely, pp 6-8, 10.

The prognosis of severe chronic fatigue syndrome appears to be associated with psychiatric morbidity and in particular depression.
Bonner D, Butler S, Chalder T, Ron M, Wessely S. A follow up study of chronic fatigue syndrome. J Neurol, Neurosurg & Psychiatry 1994;57: 617-621.

Attribution of illness to a physical cause does not appear to be as important a prognostic factor in the long term.
Bonner D, Butler S, Chalder T, Ron M, Wessely S. A follow up study of chronic fatigue syndrome. J Neurol, Neurosurg & Psychiatry 1994;57: 617-621.

In contrast with Sharpe et al we found no association between membership of the myaglic [sic] encephalomyelitis association and continuing morbidity at follow up.
Bonner D, Butler S, Chalder T, Ron M, Wessely S. A follow up study of chronic fatigue syndrome. J Neurol, Neurosurg & Psychiatry 1994;57: 617-621.

The rejection of any social or psychological intervention may set in motion a series of maladaptive behavioural patterns.

If this is so, then one would expect the prognosis for neurasthenia/CFS to be poor. There is considerable evidence that this is so.
Wessely S. Neurasthenia and chronic fatigue syndrome: theory and practice. Transcultural Psychiatric Review 1994;31:173-209.

Poor prognosis was independently associated with a belief in a viral cause for illness, membership of a self-help organization, current emotional disorder and alcohol avoidance.
Wessely S. Neurasthenia and chronic fatigue syndrome: theory and practice. Transcultural Psychiatric Review 1994;31:173-209.

Much of the current information on CFS may also adversely influence prognosis. Current literature on CFS is frequently gloomy in tone, with a tendency to use "worst case" examples for publicity purposes.
Wessely S. Neurasthenia and chronic fatigue syndrome: theory and practice. Transcultural Psychiatric Review 1994;31:173-209.

The main association of poor prognosis was the strength of belief in an exclusively physical cause for symptoms.
Wessely S. Social and cultural aspects of CFS. J Musculoskeletal Pain 1995;3:111-122.

Natural killer cells (CD16//CD56//CD30) were significantly increased in CFS patients compared to controls, as was the percentage of CD11b/ CD8 cells. . . . No immune measures changed during the course of the study, and there was no link between clinical improvement as a result of the treatment program [CBT or relaxation therapy] and immune status. Immune measures did not predict response or lack of response to treatment. In conclusion, we have been unable to replicate previous findings of immune activation in CFS and unable to find any important associations between clinical status, treatment response, and immunological status.
Peakman M, Deale A, Field R, Mahalingam M, Wessely S. Clinical improvement in chronic fatigue syndrome is not associated with lymphocyte subsets of function or activation. Clin Immun Immunopath 1997;82:83-91.

The patients who cause the greatest clinical difficulty are those with both severe symptoms and strong beliefs.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Other somatic symptoms commonly associated with CFS (and required by some definitions) include muscle pain, sore throats, and tender lymph glands. Although the value of any specific symptom is uncertain, a large number of somatic symptoms suggests a greater likelihood of psychiatric disorder and a poorer outcome.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

It is also important to gain an impression of the strength in which the patient holds his illness beliefs, as a conviction of a solely physical cause for symptoms is the single most consistent predictor of poor outcome. Beliefs are consequently probable illness-maintaining factors and targets for therapeutic intervention.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

. . . the belief that symptoms are due to a persistent viral infection of muscle may or may not be true but more importantly is clinically unhelpful. Such a belief can lead to the patient interpreting myalgia as evidence of worsening disease, and consequently being reluctant to engage in rehabilitation.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Consistently reported risk factors for poor prognosis are older age, more chronic illness, having a comorbid psychiatric disorder and holding a belief that the illness is due to physical causes.
Joyce J, Hotopf M, Wessely S. The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review. Q J Med 1997:90:223-233

Beliefs about avoidance of exercise and activity changed in the cognitive therapy group, but not in the control group. This change was associated with improved outcome.
Deale A, Chalder T, Wessely S. Illness beliefs and treatment outcome in chronic fatigue syndrome. J Psychosom Res 1998:45:77-83

In this study, good outcome is associated with change in avoidance behavior, and related beliefs, rather than casual attributions.
Deale A, Chalder T, Wessely S. Illness beliefs and treatment outcome in chronic fatigue syndrome. J Psychosom Res 1998:45:77-83

Sufferers are frequently avoidant of exertion, and such avoidance is associated with a poorer outcome.
Hotopf M, Wessely S. Chronic fatigue syndrome; mapping the interior. Psych Med 1999:29:255-258

Causal attributions are important to understand since they have been related to negative outcomes. Somatic illness attributions made by patients with CFS have been shown to be associated with increased symptoms, increased functional impairment and worse subjective and objective outcomes over a 2-year period.
Butler J, Chalder T, Wessely S. Casual attributions for somatic sensations in patients with CFS and their partners. Psychological Medicine 2001: 31: 97-105

Few patients crossed the threshold for “normal” fatigue, despite achieving a good outcome on other measures.
Deale A, Chalder T, Hussain K, Wessely S. Long term outcome of cognitive behaviour therapy versus relaxation therapy for chronic fatigue syndrome: a 5 year follow-up study. Am J Psychiatry 2001: 158: 2038-2042

Cognitive behavior therapy for chronic fatigue syndrome can produce some lasting benefits but is not a cure. Once therapy ends, some patients have difficulty making further improvements.
Deale A, Chalder T, Hussain K, Wessely S. Long term outcome of cognitive behaviour therapy versus relaxation therapy for chronic fatigue syndrome: a 5 year follow-up study. Am J Psychiatry 2001: 158: 2038-2042

The prognosis for adults with chronic fatigue syndrome is poor: most patients referred to specialist settings remain disabled and symptomatic for many years.
Deale A, Chalder T, Hussain K, Wessely S. Long term outcome of cognitive behaviour therapy versus relaxation therapy for chronic fatigue syndrome: a 5 year follow-up study. Am J Psychiatry 2001: 158: 2038-2042

People who recover from chronic fatigue syndrome often continue to score higher on the Fatigue Questionnaire than normal comparison subjects.
Deale A, Chalder T, Hussain K, Wessely S. Long term outcome of cognitive behaviour therapy versus relaxation therapy for chronic fatigue syndrome: a 5 year follow-up study. Am J Psychiatry 2001: 158: 2038-2042

. . . only 26% of the patients who received cognitive behavior therapy were judged completely recovered after 5 years, and almost one-half still fulfilled the criteria for chronic fatigue syndrome.
Deale A, Chalder T, Hussain K, Wessely S. Long term outcome of cognitive behaviour therapy versus relaxation therapy for chronic fatigue syndrome: a 5 year follow-up study. Am J Psychiatry 2001: 158: 2038-2042

Outcome appears to be influenced by the presence of psychiatric disorders and beliefs about causation and treatment.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

20-50% of adults with the disorder will show some improvement in the medium term but few will return to their previous level of functioning.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

The strength of conviction that symptoms have a solely physical cause is associated with poor outcome, perhaps because it is linked to beliefs about the harmful effects of exercise. In the initial stages of CFS, such beliefs may fuel avoidance of activity, and are often reinforced by each successive aversive experience of exercise-related fatigue, leading to increasing restrictions. Conversely, personal expectations about ‘not giving in’ may lead to inadequate rest during the initial stages of the illness, thus delaying recovery.
Wessely S, Chronic fatigue syndrome. Psychiatry 2003: 2; 20-23

Factors causing the condition remain unclear, although there is some consensus that psychological and social factors influence outcome.
Skowera A, Hotopf M, Sawicka E, Varela-Calvino R, Wessely S, Peakman M. High levels of type 2 cytokine producing cells in chronic fatigue syndrome. Clin Exp Immunology 2004: 135: 294-302.

Diagnosed CFS patients have a worse prognosis than fatigue syndrome patients without such a label. The ways in which CFS patients perceive themselves, label their symptoms and appraise stressors may perpetuate or exacerbate their symptoms, a process that involves psychological, psychosocial and cultural factors.
Huibers M, Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 2006: 36

 

[Valentijn]

CAUSE AND PERPETUATION Part I

...[CFS] symptoms are perpetuated by a cycle of inactivity, deterioration in exercise tolerance and further symptoms. This is compounded by the depressive illness that is often part of the syndrome The result is a self-perpetuating cycle of exercise avoidance.
Wessely S, David A, Butler S, Chalder T. The Management of the Chronic Postviral Fatigue Syndrome. J Roy Coll General Practitioners 1989; 39: 26-29.

Viruses may not be either necessary nor sufficient for the development of CFS. Instead, it suggests that the link, if any, between virus and fatigue operates via recognised psychiatric disorder in the majority of cases. . . .
Wessely S, Powell R.The nature of fatigue: A comparison of chronic "postviral" fatigue with neuromuscular and affective disorders. J Neurol Neurosrg Psychiatry 1989;52;940-948.

Such an external attribution of cause in CFS (as in the 72% blaming a viral infection in our sample) may lead to helplessness, increased fatigue, lack of self-efficacy and diminished responsibility for ones own health.
Powell R, Dolan R, Wessely S. Attributions and self esteem in depression and the chronic fatigue syndrome. J Psychosomatic Res 1990; 34: 665-673.

Looking specifically at CFS, it is plausible that an initial infective trigger may begin a cycle in which both attributional and cognitive factors fuel avoidant behaviour. The initial symptoms, in particular fatigue and myalgia, engender a state of "learned helplessness", being potent, aversive and uncontrollable, and may also trigger or exacerbate the mood disorder that is found in many patients.
Butler S, Chalder T, Ron M, Wessely S. Cognitive Behaviour Therapy in the Chronic Fatigue Syndrome. J Neurol Neurosurg Psychiatry 1991; 54; 153-158.

The result is a vicious circle of symptoms, avoidance, fatigue, demoralisation and depression-the clinical picture of CFS.
Butler S, Chalder T, Ron M, Wessely S. Cognitive Behaviour Therapy in the Chronic Fatigue Syndrome. J Neurol Neurosurg Psychiatry 1991; 54; 153-158.

Postexposure variables, including coping strategies, illness beliefs, and subsequent treatment, also influence the risk of chronic fatigue states.
Lewis G, Wessely S. The Epidemiology of Fatigue: More Questions than Answers. J Epidem Comm Health 1992; 46; 92-97.

There is no evidence of hysterical or feigned origin to symptoms.
The National Archives of the UK: Public Record Office (PRO) BN 141/1, October or November 1993 McGrath Summarizing Talk by Thomas and Wessely, pp 6-8, 10.

It is probable that whilst infection may contribute to the onset of CFS it is only likely to do so in predisposed individuals.
Hotopf M, Wessely S. Viruses, neurosis and fatigue. J Psychosom Res 1994; 38;499-514.

. . . lack of physical activity has profound effects on muscle function and chemistry as well as on cardiac function, but it may also affect both immune and psychological status. Particularly relevant is the fact that lack of activity is itself a risk factor for fatigue, which may set up a vicious circle of inactivity and impairment. Studies of CFS have reported abnormalities in many aspects of neuromuscular, cardiac, immunologic, and psychological functioning, yet the possible confounding role of inactivity is not always addressed.
Wessely S. The epidemiology of chronic fatigue syndrome. Epidemiologic Reviews 1995; 17:139-151.

The strongest independent pedictors of postinfectious fatigue were fatigue assessed before presentation with clinic infection and psychological distress before presentation and at presentation with the acute infection.
Wessely S, Chalder T, Hirsch S, Pawlikowska T, Wallace P, Wright D. Postinfectious fatigue: prospective cohort study in primary care. Lancet 1995:345;1333-1338.

Belief that fatigue was due to a physical cause was not a significant predictor of fatigue.
Wessely S, Chalder T, Hirsch S, Pawlikowska T, Wallace P, Wright D. Postinfectious fatigue: prospective cohort study in primary care. Lancet 1995:345;1333-1338.

The best predictor of chronic fatigue was a prolonged duration of time off work after the illness [viral meningitis].
Hotopf M, Noah N, Wessely S. Chronic fatigue and psychiatric morbidity after viral meningitis. J Neurol Neurosurg Psychiatry 1996:60:504-509

The best predictor of severe chronic fatigue syndrome diagnosed by Center for Disease Control criteria was past psychiatric illness.
Hotopf M, Noah N, Wessely S. Chronic fatigue and psychiatric morbidity after viral meningitis. J Neurol Neurosurg Psychiatry 1996:60:504-509

Prolonged time off work after a viral infection may be the principle mechanism of fatigue.
Hotopf M, Noah N, Wessely S. Chronic fatigue and psychiatric morbidity after viral meningitis. J Neurol Neurosurg Psychiatry 1996:60:504-509

Previous psychiatric morbidity might be a risk factor by leading to prolonged convalescence, or alternatively may act directly due to the considerable overlap between depression, anxiety, and fatigue.
Hotopf M, Noah N, Wessely S. Chronic fatigue and psychiatric morbidity after viral meningitis. J Neurol Neurosurg Psychiatry 1996:60:504-509

The treatment of CFS requires that the patient is given a positive explanation of the cause of his symptoms, emphasizing the distinction among factors that may have predisposed them to develop the illness (lifestyle, work stress, personality), triggered the illness (viral infection, life events) and perpetuated the illness (cerebral dysfunction, sleep disorder, depression, inconsistent activity, and misunderstanding of the illness and fear of making it worse).
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Certain physical abnormalities may be found that reflect the consequence of chronic ill health and inactivity, Muscle wasting might he the result of prolonged bedrest, and suggests that active rehabilitation is an urgent priority, but will be prolonged. Another possible consequence of chronic inactivity is postural hypotension. We routinely test for this, since, if present, it can explain, and hence help the patient to understand, symptoms such as dizziness. In our experience it usually resolves with increased activity.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Physical illness attributions were widespread, did not change with treatment, and were not associated with poor outcome in either the cognitive-behavior therapy group or the control group.
Deale A, Chalder T, Wessely S. Illness beliefs and treatment outcome in chronic fatigue syndrome. J Psychosom Res 1998:45:77-83

. . . although trivial viral infections are not associated with later chronic fatigue, the picture is different with severe infections, such as glandular fever, viral meningitis and hepatitis A with cohort studies demonstrating clear associations.
Hotopf M, Wessely S. Chronic fatigue syndrome; mapping the interior. Psych Med 1999:29:255-258

For all three enzymes the basal and activated enzyme activities are lower in the CFS patients than in the controls. The differences are most striking for aspartate aminotransferase (pyridoxine). . . .This indicates a functional deficiency of the B vitamins, particularly pyridoxine. . . .
Heap L, Peters T, Wessely S. Assessment of vitamin B status in patients with chronic fatigue syndrome. JRSM 1999: 92: 183-185

The most striking deficiency, that of pyridoxine, if present in the central nervous system, might account for the depressive features of CFS. These deficiencies are unlikely to reflect low dietary intake or malabsorption since CFS patients are typically well nourished; moreover, a recent dietary survey yielded no evidence that such patients had low intakes of pyridoxine, riboflavin, thiamine or various other vitamins and micronutrients. It is possible that subnormal vitamin activities at a cellular level are responsible for the observed findings.
Heap L, Peters T, Wessely S. Assessment of vitamin B status in patients with chronic fatigue syndrome. JRSM 1999: 92: 183-185

But clearly, many patients with CFS are currently taking vitamin and other supplements with little evidence of benefit.
Heap L, Peters T, Wessely S. Assessment of vitamin B status in patients with chronic fatigue syndrome. JRSM 1999: 92: 183-185

Patients with chronic fatigue syndrome (CFS) often make somatic attributions for their illness which has been associated with poor outcome. A tendency to make somatic attributions in general may be a vulnerability factor for the development of CFS.
Butler J, Chalder T, Wessely S. Casual attributions for somatic sensations in patients with CFS and their partners. Psychological Medicine 2001: 31: 97-105

On balance, there does appear to be down-regulation of the HPA axis in at least some patients with CFS, and that this is most apparent on challenge tests, rather than measures of baseline function. This would concur with patients' reports of symptoms worsening following physical or emotional stress.
Parker A, Wessely S, Cleare A. The neuroendocrinology of chronic fatigue syndrome and fibromyalgia. Psychological Medicine 2001:31:1331-1345

Downregulation of the HPA axis is still weak as an aetiological theory since no theoretical model exists of how this may come about - from viruses, stress or other insult. This is in contrast to depression, where a robust model exists of how chronic psychological stress leads to upregulation of the HPA axis, and may also explain changes in monoamine pathways.
Parker A, Wessely S, Cleare A. The neuroendocrinology of chronic fatigue syndrome and fibromyalgia. Psychological Medicine 2001:31:1331-1345

CFS shares many similarities with other medically unexplained syndromes such as fibromyalgia, irritable bowel syndrome, and multiple chemical sensitivity. Of particular importance in all of these illnesses are patients’ health beliefs and attributions.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

 

[Valentijn]

CAUSE AND PERPETUATION Part II

. . . there is no specific underlying disease process.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

[From Table] Perpetuating factors in Chronic Fatigue Syndrome: Depression and anxiety, Lack of physical fitness, Sleep disorder, Chronic life stresses and difficulties, Inaccurate or unhelpful illness beliefs, Avoidance of activities.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

Rest reduces activity tolerance, and has profound effects on cardiovascular and neuromuscular function. With time, more symptoms and greater fatigue will occur at progressively lower levels of exertion. Inactivity therefore sustains symptoms, and increases sensitivity to them.
Wessely S, Chronic fatigue syndrome. Psychiatry 2003: 2; 20-23

Patient support groups have evolved to the point where they have an important role in propagating information about illnesses as well as offering support to the patient and family. However, this support is not always unbiased, and sometimes the views propagated by these groups can encourage inappropriate illness behaviour.
Page L, Wessely S. Medically unexplained symptoms: exacerbating factors in the doctor-patient encounter. J Royal Soc Medicine 2003: 96: 223-227

We conclude that some autonomic dysfunction is present in CFS patients, the most likely explanation being physical inactivity.
Winkler A, Blair D, Marsden J, Peters T, Wessely S, Cleare A. Autonomic Function and Serum Erythropoietin Levels in Chronic Fatigue Syndrome. Journal of Psychosomatic Research 2004: 56: 179-183

We therefore interpret these data as indicating a consistent and coordinated bias towards type 2 responsiveness in CFS. Importantly, however, we were unable to identify any correlation between the degree of type 2 responsiveness and any clinical measurement of illness severity.
Skowera A, Hotopf M, Sawicka E, Varela-Calvino R, Wessely S, Peakman M. High levels of type 2 cytokine producing cells in chronic fatigue syndrome. Clin Exp Immunology 2004: 135: 294-302.

In conclusion, the current available data on immune cell and cytokine deregulation in CFS are consistent with an immunomodulatory role for the HLA system in this disease.
Fritz E, Smith, J., Kerr, J., Cleare, A., Wessely,S., Mattey, D. Association of chronic fatigue syndrome with human leucocyte antigen class II alleles. Journal of Clinical Pathology 2005;58:860-863.

There is compelling evidence that a pessimistic illness perception is an important perpetuating factor in CFS. The ways in which CFS patients perceive themselves, label their symptoms and appraise stressors may perpetuate or exacerbate their physical and psychosocial dysfunction.
Huibers M, Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 2006: 36

Labelling physical symptoms as an illness carries the risk of the symptoms becoming self-validating and self-reinforcing, often promoted by the Internet, support groups, self-help literature and mass media.
Huibers M, Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 2006: 36

The anguish of distress and fatigue might drive an individual to find a name and meaning to his suffering, and the label of CFS or ME might present that cathartic voice. Learning about a new disease may lead to redefinition of earlier, ill-defined symptoms into one concept of illness, heightening bodily awareness and reinforcing illness beliefs.
Huibers M, Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 2006: 36

CFS, as with many other contested diagnoses, appears to have started from small groups and then spread along the lines of communication and exposure to information, in a similar fashion to infectious diseases.
Huibers M, Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 2006: 36

Diagnosis elicits the belief the patient has a serious disease, leading to symptom focusing that becomes self-validating and selfreinforcing and that renders worse outcomes, a self-fulfilling prophecy, especially if the label is a biomedical one like ME. Diagnosis leads to transgression into the sick role, the act of becoming a patient even if complaints do not call for it, the development of an illness identity and the experience of victimization.
Huibers M, Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 2006: 36

For fatigued patients in an acute or early phase, it may be more appropriate to postpone an official diagnosis of CFS because the label may stimulate chronicity, rather than a focus on possible solutions.
Huibers M, Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 2006: 36

Individuals who exercise frequently are more likely to report a diagnosis of CFS in later life. This may be due to the direct effects of this behavior or associated personality factors. Continuing to be active despite increasing fatigue may be a crucial step in the development of CFS.
Harvey S, Wadsworth M, Wessely S, Hotopf M, The aetiology of chronic fatigue syndrome; testing popular hypotheses using a National Birth Cohort. Psychosomatic Medicine 2008: 70: 488-495

Individuals between the ages of 31 and 43 years who persistently engaged in physical activity on at least a weekly basis were around ten times more likely to report CFS later in life.
Harvey S, Wadsworth M, Wessely S, Hotopf M, The aetiology of chronic fatigue syndrome; testing popular hypotheses using a National Birth Cohort. Psychosomatic Medicine 2008: 70: 488-495

In contrast to those with medically unexplained symptoms, those who reported a diagnosis of CFS did not have increased levels of childhood or parental illness.
Harvey S, Wadsworth M, Wessely S, Hotopf M, The aetiology of chronic fatigue syndrome; testing popular hypotheses using a National Birth Cohort. Psychosomatic Medicine 2008: 70: 488-495

We know that some predisposing factors, such as being female, previously suffering from a psychiatric disorder, emotional instability, and having a disabling illness in childhood may be present many years before any fatigue is reported.
Harvey S, Wessely S. Tired all the Time: Can new Research on Fatigue Help Clinicians? Br J Gen Practice 2009: 59: 93-100

Despite persistent attempts, no compelling evidence for biological markers of established CFS has emerged to date. Many studies have found alterations to the hypothalamopituitary-adrenal axis, although prospective studies suggest these changes are not present in the early stages of the illness and are likely to be secondary to behavioural changes such as inactivity, de-conditioning, and sleep disturbance.
Harvey S, Wessely S. Tired all the Time: Can new Research on Fatigue Help Clinicians? Br J Gen Practice 2009: 59: 93-100

This suggests that CFS results from a combination of pre-morbid risk, followed by an acute event leading to fatigue, and then a pattern of behavioural and biological responses contributing to a prolonged severe fatigue syndrome. Based on this model, the initial cause of the fatigue has a limited impact on the eventual course of the illness. Rather, it is the maintaining factors, such as dramatic fluctuations in levels of activity (so called 'boom and bust' cycles), that need to be addressed if recovery is to occur.
Harvey S, Wessely S. Chronic fatigue syndrome: identifying zebras amongst the horses. BMC Medicine 2009: 7: 58

Whether a primary or secondary factor, once hypocortisolism has developed it may itself lead to symptoms and represent a maintaining factor in illness chronicity.
Roberts ADL, Charler M, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ. Does hypocortisolism predict a poor response to Cognitive Behavioural Therapy in Chronic Fatigue Syndrome? Psychological Medicine 2010: 40:515-522

We found a significant negative correlation between 24-h UFC and WSAS scores, suggesting that lower cortisol was associated with higher levels of disability.
Roberts ADL, Charler M, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ. Does hypocortisolism predict a poor response to Cognitive Behavioural Therapy in Chronic Fatigue Syndrome? Psychological Medicine 2010: 40:515-522

It is certainly plausible that low cortisol levels lead to worsened functional capacity, or the perception of worsened functional capacity, given the association of low cortisol with fatigability in other states such as Addison’s disease.
Roberts ADL, Charler M, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ. Does hypocortisolism predict a poor response to Cognitive Behavioural Therapy in Chronic Fatigue Syndrome? Psychological Medicine 2010: 40:515-522

Psychosocial influences include social support, which is a protective factor against CFS, whereas social strain, including gender disadvantage and financial strain, are known risk factors for poor health in general and for CFS in particular.
Bhui K, Dinos S, Ashby D, Nazroo J, Wessely S, White P. Chronic fatigue syndrome in an ethnically diverse population: the influence of psychosocial adversity & physical inactivity. BMC Medicine 2011: 9; 26

It is, however, my opinion that new insights into the nature of CFS are most likely to emerge from the neurosciences, by which I mean basic and clinical neurosciences and psychology. Understanding the nature of the sense of the mental and physical effort that these patients experience and the consequences of experiencing this effort will lie at the heart of it.
Holgate S, Komaroff A, Mangin D, Wessely S. Chronic fatigue syndrome: understanding a complex illness. Nature Reviews Neuroscience 2001: 27 July 2011; doi:10.1038/nrn3087

It still seems to me that the most fruitful avenue for research is going to be via neurosciences, and understanding the nature of the sense of physical and mental effort, which is at the heart of the condition.
Wessely, S. The nature of fatigue: a comparison of chronic “postviral” fatigue with neuromuscular and affective disorders. J Neurol Neurosurg Psychiatry 2012, 83: 4-5

Whatever one’s views on the topic of ME/CFS, even the most passionate critic of psychiatry or psychological medicine would agree that this document is not a fair reflection of what is known. The ScotPHN appear to have marginalised psychiatric and psychological perspectives of ME/CFS. Their summaries, for example, of aetiology do not explore any of the established biopsychosocial risk factors for ME/CFS as demonstrated in a recent meta-analysis from the Centre for Reviews and Dissemination.
Smith Ch, Wessely S. Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. JNNP 2012.

 

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TREATMENT Part I

Cognitive therapy helps the [CFS] patient understand how genuine symptoms arise from the frequent combination of physical inactivity and depression, rather than continuing infection, while a behavioural approach enables the treatment of avoidance behaviour and a gradual return to normal physical activity.
Wessely S, David A, Butler S, Chalder T. The Management of the Chronic Postviral Fatigue Syndrome. J Roy Coll General Practitioners 1989; 39: 26-29.

Instead of antiviral agents, therapeutic success should result from reducing avoidant behaviour, decreasing the perception of helplessness and improving mood. . . .
Butler S, Chalder T, Ron M, Wessely S. Cognitive Behaviour Therapy in the Chronic Fatigue Syndrome. J Neurol Neurosurg Psychiatry 1991; 54; 153-158.

We also doubt that improvement was solely due to the physiological benefits of increased exercise, since behavioural targets were chosen on the basis of avoidance, not because of their physiological or ergonomic properties, which in practice were often minimal.
Butler S, Chalder T, Ron M, Wessely S. Cognitive Behaviour Therapy in the Chronic Fatigue Syndrome. J Neurol Neurosurg Psychiatry 1991; 54; 153-158.

. . . the worst thing to do is to tell them to rest.
The National Archives of the UK: Public Record Office (PRO) BN 141/1, October or November 1993 McGrath Summarizing Talk by Thomas and Wessely, pp 6-8, 10.

Rehabilitation is essential, exercise is good for these patients, prolonged inactivity causes adverse physical and psychological consequences.
The National Archives of the UK: Public Record Office (PRO) BN 141/1, October or November 1993 McGrath Summarizing Talk by Thomas and Wessely, pp 6-8, 10.

Rest as a coping strategy is thus of short-term benefit to those with acute fatigue syndromes, but in the long-term is harmful.
Wessely S. Social and cultural aspects of CFS. J Musculoskeletal Pain 1995;3:111-122.

Uncertainty over cause need not prevent effective treatment. Cognitive behavior therapy is used for medically unexplained somatic problems and for disorders analogous to chronic fatigue syndrome, such as fibromyalgia and chronic pain.
Deale A, Chalder T, Marks I, Wessely S. A randomised controlled trial of cognitive behaviour therapy for chronic fatigue syndrome. Am J Psychiatry 1997;154:408-414.

Often, the first step in our intervention was not to increase activity but to redistribute or even reduce it, interspersing it with sufficient rest. Activity levels were increased only after a consistent, manageable program was established.
Deale A, Chalder T, Marks I, Wessely S. A randomised controlled trial of cognitive behaviour therapy for chronic fatigue syndrome. Am J Psychiatry 1997;154:408-414.

Most patients will have reduced their amount of activity for fear of exacerbating their symptoms, and will continue to monitor both activity and its immediate consequences in order to avoid “relapse;” this is an understandable response in the short term, but is not helpful in the longer term. Similar strategies and focussing on symptoms are associated with worse disability, whereas maintaining activity and being distracted from symptoms are associated with less functional impairment.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

An important task of treatment is to return responsibility to the patient for management and rehabilitation. . . .
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

It is important to remember that the belief that exertion will cause a worsening is founded on real experiences of sufferers, thus behavioural change requires a leap of faith on the part of the patient.
Hotopf M, Wessely S. Chronic fatigue syndrome; mapping the interior. Psych Med 1999:29:255-258

In some patients with chronic fatigue syndrome, low-dose hydrocortisone reduces fatigue levels in the short term.
Cleare A, Heap E, Malhi G, Wessely S, O’Keane, V, Miell J. Low dose hydrocortisone in chronic fatigue syndrome: a randomised crossover trial. Lancet 1999;353:455-458

This study shows that low-dose hydrocortisone results in significant reductions in self-rated fatigue and disability in patients with chronic fatigue syndrome. Moreover, about a third of patients had a clinically significant reduction in fatigue, most to a level at or below that of the general population, with accompanying reductions in disability.
Cleare A, Heap E, Malhi G, Wessely S, O’Keane, V, Miell J. Low dose hydrocortisone in chronic fatigue syndrome: a randomised crossover trial. Lancet 1999;353:455-458

I have little experience of formal writings on ethics, and qualified from a UK medical school before ethics teaching was a part of the curriculum. Nevertheless, it seems clear that one of the principal ethical duties of the doctor is to tell the truth.
Wessely S. “To tell or not to tell”: The problem of medically unexplained symptoms. In ; Ethical Dilemmas in Neurology (eds Zeman & Emanuel), WB Saunders, 1999, 41-53

Patients will be more inclined to get better when they are provided with satisfactory explanations for their problems. By satisfactory I mean from the patient’s point of view - not satisfactory in a narrow scientific sense, but in a symbolic or even metaphorical perspective.
Wessely S. “To tell or not to tell”: The problem of medically unexplained symptoms. In ; Ethical Dilemmas in Neurology (eds Zeman & Emanuel), WB Saunders, 1999, 41-53

By now I hope I have convinced the reader that there are insuperable objections to the neurologist "telling it as he sees it". The loser will be the patient, who will be denied a chance of receiving effective treatment, who will be less likely to engage in such treatments at a later date, and more likely to shift allegiances to those who are less in a position to help.
Wessely S. “To tell or not to tell”: The problem of medically unexplained symptoms. In ; Ethical Dilemmas in Neurology (eds Zeman & Emanuel), WB Saunders, 1999, 41-53

In all other circumstances telling the patient that not only are they wrong, but that the alternative label is one that is totally unacceptable to them, a psychological problem, is ruinous to the doctor patient relationship. So why do it? Instead it seems to this author that the only sensible option is to agree. This is ethical - CFS is an operational diagnosis, and if someone fulfils the appropriate criteria, then that is what they have.
Wessely S. “To tell or not to tell”: The problem of medically unexplained symptoms. In ; Ethical Dilemmas in Neurology (eds Zeman & Emanuel), WB Saunders, 1999, 41-53

Giving a patient a label that implies both a chronic incurable condition, and one which can only be palliated by chronic rest, is indeed an indefensible action for a health professional. Confirming the existence of non existent pathological process, such as encephalomyelitis, only adds to the patient's difficulties by denying any prospect of cure except a medical "breakthrough", always promised and never forthcoming.
Wessely S. “To tell or not to tell”: The problem of medically unexplained symptoms. In ; Ethical Dilemmas in Neurology (eds Zeman & Emanuel), WB Saunders, 1999, 41-53

. . . trust between doctor and patient may be better served by not telling the truth.
Wessely S. “To tell or not to tell”: The problem of medically unexplained symptoms. In ; Ethical Dilemmas in Neurology (eds Zeman & Emanuel), WB Saunders, 1999, 41-53

Given the clear ethical imperative against lying, what can be left? I suggest the solution is to say little. Is it imperative that the patient be told their illness is truly "all in the mind"? I suspect not.
Wessely S. “To tell or not to tell”: The problem of medically unexplained symptoms. In ; Ethical Dilemmas in Neurology (eds Zeman & Emanuel), WB Saunders, 1999, 41-53

. . . improvement only requires a shift in the patient's view on the relative merits of rest and exercise.
Wessely S. “To tell or not to tell”: The problem of medically unexplained symptoms. In ; Ethical Dilemmas in Neurology (eds Zeman & Emanuel), WB Saunders, 1999, 41-53

. . . to get well in these circumstances is to abandon veracity. Patients will be more inclined to get better when they are given explanations for their problems that they themselves find acceptable; unsatisfactory explanations may not be merely discarded, as the patient may try actively to prove them false. As patients rarely return to doctors who belittle their illness experience (whether intentionally or not), essential opportunities to treat the patient will be lost.
Wessely S, Showalter E. Chronic fatigue syndrome : a true illness or a social and political issue? In: Horizons in Medicine, Vol 10 (ed G Williams), London, Royal College of Physicians 1999, 501-516.

The current study showed how those who are in close contact with patients with CFS have similar attributions for the patient's symptoms. This may result in the patient having less opportunity to consider alternative explanations for their illness. It is therefore important to include those in close contact with the patient.
Butler J, Chalder T, Wessely S. Casual attributions for somatic sensations in patients with CFS and their partners. Psychological Medicine 2001: 31: 97-105

It is a poorly understood condition, of uncertain aetiology and little in the way of established treatment. In such circumstances, the quality of the doctor–patient relationship is central: problems in the relationship may contribute to persistent disability, whereas a therapeutic alliance is recommended as a pre-requisite for effective management.
Deale A, Wessely S. Patients' perceptions of medical care in chronic fatigue syndrome. Soc Sci Med 2001; 52; 1859-1864

Those who are referred to specialist settings tend to have severe fatigue, marked disability and strongly held physical illness attributions. Such patients can be genuinely difficult for doctors to diagnose and manage and their perceptions of medical care may reflect these complications.
Deale A, Wessely S. Patients' perceptions of medical care in chronic fatigue syndrome. Soc Sci Med 2001; 52; 1859-1864

Social, behavioral, and psychological variables are important in both chronic fatigue and the chronic fatigue syndrome. Interventions that address these general variables can be successful, and currently they are often more successful than interventions directed at specific causes.
Wessely S. Chronic Fatigue: Symptom and Syndrome? Annals Int Med 2001:134:838-843

After some uncertainties, there is increasing consensus among patients and professionals alike that persistent rest as a way of managing symptoms may create more problems than it solves. In its place has come a realization that rest, activity, sleep, and exercise need to be planned coherently rather than simply in response to symptoms.
Wessely S. Chronic Fatigue: Symptom and Syndrome? Annals Int Med 2001:134:838-843

 

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TREATMENT Part II

The main goal of cognitive behavior therapy was to help patients improve activity levels and quality of life, rather than overcome symptoms of the illness.
Deale A, Chalder T, Hussain K, Wessely S. Long term outcome of cognitive behaviour therapy versus relaxation therapy for chronic fatigue syndrome: a 5 year follow-up study. Am J Psychiatry 2001: 158: 2038-2042

It is also important to take note of any abnormal or unusual beliefs the patient may describe whilst avoiding collusion with them. Negotiating illness beliefs is a key aspect of treatment in CFS.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

It is also important to identify potential obstacles to recovery. This requires the exploration of the patient’s illness beliefs, their coping strategies and prior experience of medical care, as well as the attitude of their carers or family.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

The acronyms ME and CFIDS are to be avoided as ‘myalgic encephalomyelitis’ is a misleading term which implies a known disease process and there is no consistent evidence to justify the addition of ‘immune dysfunction’ to the diagnosis.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

Graded exercise is central to the treatment of chronic fatigue syndrome.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

Activities should be set at an attainable level, and the patient should be made aware that initially symptoms may worsen but will subsequently improve.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

There is now considerable research backing for the effectiveness of cognitive behavioural therapy, which as well as including the principles of treatment already discussed, places an emphasis on the reappraisal of illness beliefs.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

Expect improvements to take weeks, not days.
Wessely S, Chronic fatigue syndrome. Psychiatry 2003: 2; 20-23

The aim is to avoid the handicapping, stimulus-driven cycle of CFS, in which symptoms are always a signal to rest, and to replace previous sensitization by tolerance.
Wessely S, Chronic fatigue syndrome. Psychiatry 2003: 2; 20-23

A compromise strategy is “constructive labelling,” expanding on the lay name. It would mean treating chronic fatigue syndrome as a legitimate illness, acknowledging that it may have a viral trigger (as many patients report), while gradually expanding understanding of the condition to incorporate the psychological and social dimensions.
Fischoff B, Wessely S. Predictable care for inexplicable health problems. Br Med J 2003: 326:595-597

In contrast with the conventional wisdom, the placebo response in CFS is low. Psychological-psychiatric interventions were shown to have a lower placebo response, perhaps linked to patient expectations.
Cho H, Hotopf M, Wessely S. The placebo effect in the treatment of chronic fatigue syndrome: a systematic review and meta analysis. Psychosomatic Medicine 2005: 67:301-313

Contextual factors such as a collaborative therapeutic relationship should be maximized in the management of CFS, hence increasing the overall effect of an active treatment, which consists of an active component and a nonspecific component—the placebo effect.
Cho H, Hotopf M, Wessely S. The placebo effect in the treatment of chronic fatigue syndrome: a systematic review and meta analysis. Psychosomatic Medicine 2005: 67:301-313

Patients with chronic fatigue syndrome (CFS) who were allocated CBT as part of a RCT showed significantly greater reductions in fatigue and improvements in social adjustment at 6-month follow-up than people who received CBT as part of routine clinical practice.
Quarmby L, Rimes K, Deale A, Wessely S, Chalder T. Cognitive-behaviour therapy for chronic fatigue syndrome: comparison of outcomes within and outside the confines of a randomised controlled trial. Beh Res Therapy 2007: 45: 1085-1094

The success of interventions like CBT suggests that behavioural patterns, such as a ‘boom and bust’ cycle of activity, may be particularly important in maintaining fatigue symptoms.
Harvey S, Wessely S. Tired all the Time: Can new Research on Fatigue Help Clinicians? Br J Gen Practice 2009: 59: 93-100

Lower 24-h UFC output was associated with a poorer response to CBT but only in psychotropic medication-free patients. A flattened diurnal profile of salivary cortisol was also associated with a poor response to CBT.
Roberts ADL, Charler M, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ. Does hypocortisolism predict a poor response to Cognitive Behavioural Therapy in Chronic Fatigue Syndrome? Psychological Medicine 2010: 40:515-522

Low cortisol is of clinical relevance in CFS, as it is associated with a poorer response to CBT.
Roberts ADL, Charler M, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ. Does hypocortisolism predict a poor response to Cognitive Behavioural Therapy in Chronic Fatigue Syndrome? Psychological Medicine 2010: 40:515-522

CBT is individually tailored, but important components include changing unhelpful patterns of rest and activity (which can include profound inactivity or intermittent bursts of overactivity interspersed with inactivity), improving sleep patterns, increasing exercise capacity, identifying unhelpful cognitions about the illness or the coping strategies used, using problem-solving techniques to reduce stress, and treating anxiety and depression if present.
Roberts ADL, Charler M, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ. Does hypocortisolism predict a poor response to Cognitive Behavioural Therapy in Chronic Fatigue Syndrome? Psychological Medicine 2010: 40:515-522

Not all patients respond to CBT, and several factors are associated with poor response to therapy, including physical illness attributions, treatment-resistant depression, certain illness cognitions, a passive activity pattern, and focusing on bodily symptoms.
Roberts ADL, Charler M, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ. Does hypocortisolism predict a poor response to Cognitive Behavioural Therapy in Chronic Fatigue Syndrome? Psychological Medicine 2010: 40:515-522

We suggest that the additional effects of lowered cortisol make CBT either less effective or more difficult to implement in these patients. This might imply that such patients require a longer duration of therapy, or perhaps a modified version of therapy.
Roberts ADL, Charler M, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ. Does hypocortisolism predict a poor response to Cognitive Behavioural Therapy in Chronic Fatigue Syndrome? Psychological Medicine 2010: 40:515-522

In conclusion, this study suggests that HPA axis changes (reduced cortisol levels and a flattened diurnal release of cortisol) are of clinical relevance in CFS because they are associated with a poorer response to CBT. . . . This might imply that such patients require a longer duration of therapy, or perhaps a modified version of therapy, or alternative treatments alongside CBT to obtain maximum benefit.
Roberts ADL, Charler M, Papadopoulos AS, Wessely S, Chalder T, Cleare AJ. Does hypocortisolism predict a poor response to Cognitive Behavioural Therapy in Chronic Fatigue Syndrome? Psychological Medicine 2010: 40:515-522

Over the years antidepressants have not proven that helpful in managing CFS, unlike the CBT model that we developed the following year.
Wessely, S. The nature of fatigue: a comparison of chronic “postviral” fatigue with neuromuscular and affective disorders. J Neurol Neurosurg Psychiatry 2012, 83: 4-5

Without a dispassionate and clear account of the evidence—which must include an impartial summary of the possible risks and benefits of CBT and GET— the risk is that patients are being denied information about efficacy and availability of these treatments and therefore are not able to make an informed decision about whether the treatment is acceptable to them, impeding their right to exercise choice.
Smith Ch, Wessely S. Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. JNNP 2012.

No one has ever advocated that CBT or GET should be made compulsory, but surely patients must be able to make informed choices on the basis of an unbiased quality assessment of the evidence, after which they are free to choose either way.
Smith Ch, Wessely S. Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. JNNP 2012.

These informative documents should be produced regardless of ideological perspectives, and should provide guidance based on what is known, with balance and representation of a range of views, essentially providing choice for patients and clinicians based on sound evidence. While not being prescriptive, guidelines and assessments should be focused on what may benefit patients.
Smith Ch, Wessely S. Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. JNNP 2012.

 

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BIAS AGAINST MENTAL ILLNESS AND PSYCHIATRY

The self-diagnosis (and perhaps medical diagnosis) of "ME" or "postviral fatigue" appears more influenced by views on physical or psychological causation than any particular symptom.
Wessely S, Powell R.The nature of fatigue: A comparison of chronic "postviral" fatigue with neuromuscular and affective disorders. J Neurol Neurosrg Psychiatry 1989;52;940-948.

Patients with chronic fatigue have long disliked psychiatry.
Wessely S, Powell R.The nature of fatigue: A comparison of chronic "postviral" fatigue with neuromuscular and affective disorders. J Neurol Neurosrg Psychiatry 1989;52;940-948.

The main difference between CFS and the major psychiatric disorders is neither aetiological, nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry.
The National Archives of the UK: Public Record Office (PRO) BN 141/1, 1 October 1993 Wessely to Aylward, pp 17-18.

For many it is better to have an incurable disease such as CFS than a psychological disorder even if that might be treatable. . . .
Wessely S. Neurasthenia and chronic fatigue syndrome: theory and practice. Transcultural Psychiatric Review 1994;31:173-209.

Accepting any form of psychiatric treatment is seen as stigmatizing CFS.
Wessely S. Neurasthenia and chronic fatigue syndrome: theory and practice. Transcultural Psychiatric Review 1994;31:173-209.

At the heart of CFS is the rejection of any form of psychological causation or treatment.
Wessely S. Social and cultural aspects of CFS. J Musculoskeletal Pain 1995;3:111-122.

The stereotype of CFS sufferers as perfectionists with negative attitudes toward psychiatry was not supported.
Wood B, Wessely S. Personality and social attitudes in chronic fatigue syndrome J Psychosom Med 1999:47:385-397

However, whereas most readers of this volume probably consider depression to be a legitimate diagnosis without moral overtones, this view is not shared by those who attribute their symptoms to ME.
Wessely S. “To tell or not to tell”: The problem of medically unexplained symptoms. In ; Ethical Dilemmas in Neurology (eds Zeman & Emanuel), WB Saunders, 1999, 41-53

Such cases of ‘hidden’ psychiatric morbidity may reflect the perceived stigma of psychiatric illness.
Wessely S, Chronic fatigue syndrome. Psychiatry 2003: 2; 20-23

Diagnosis may send patients in the direction of support groups, with their overrepresentation of chronic sufferers and frequent anti-psychiatric attitudes, although we should acknowledge the distinction between bona fide patient organizations and radical Internet pressure groups that are waiting for the still elusive ‘medical breakthrough’, relying solely on alternative treatments in the meantime.
Huibers M, Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 2006: 36

It has been argued that seeking a somatic illness label, as seen in functional somatic syndromes such as CFS, provides a guard against a psychiatric label for all sorts of reasons: the stigma attached to a psychiatric label, being perceived as a malingerer and the associated illness benefits (e.g. disability pensions).
Leone S, Wessely S, Huibers M, Knottnerus J, Kant U. Two sides of the same coin? On the history and phenonomology of burnout. Psychology & Health 2011: 26: 449-464.

Our findings suggest that culture, illness perceptions and accountability are important issues in both burnout and CFS as they give meaning to a certain set of symptoms and shape the diagnoses that were embraced by those suffering from these symptoms.
Leone S, Wessely S, Huibers M, Knottnerus J, Kant U. Two sides of the same coin? On the history and phenonomology of burnout. Psychology & Health 2011: 26: 449-464.

Indeed, the Canadian criteria have become a litmus test among some sections of the patient community—if you are for it, you are supporting a neurological or neuroimmune view of the illness, and if you are against it, you must be in favour of a psychological/psychiatric view.
Smith Ch, Wessely S. Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. JNNP 2012.

It strikes us, however, that internet searches of patient group websites and forums reveal a stream of antipsychiatry views, not only rejecting psychiatry in relation to ME/CFS, but also conducting personal attacks on those professionals who are involved in scientific research and review that come to opposing conclusions that are not aligned with these antipsychiatry views.
Smith Ch, Wessely S. Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. JNNP 2012.

 

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MENTAL ILLNESS - INVOLVEMENT AND COMPARISON

Suggestible patients with a tendency to somatize will continue be found among sufferers from diseases with ill defined symptomatology and external (usually infective) causation until doctors learn to deal with them more effectively.
Wessely S, Powell R.The nature of fatigue: A comparison of chronic "postviral" fatigue with neuromuscular and affective disorders. J Neurol Neurosrg Psychiatry 1989;52;940-948.

External attributions of illness to entirely organic causes distinguish ME patients from matched psychiatric controls.
Wessely S, Powell R.The nature of fatigue: A comparison of chronic "postviral" fatigue with neuromuscular and affective disorders. J Neurol Neurosrg Psychiatry 1989;52;940-948.

All the CFS groups tended to attribute their symptoms to external causes whereas the depressed controls experienced inward attribution. This may have resulted from differences in the severity of mood disorder between the samples, but it is also suggested that an outward style of attribution protects the depressed CFS patients from cognitive changes associated with low mood but at the expense of greater vulnerability towards somatic symptoms such as fatigue.
Powell R, Dolan R, Wessely S. Attributions and self esteem in depression and the chronic fatigue syndrome. J Psychosomatic Res 1990; 34: 665-673.

In contrast to depressed controls, depressed CFS sufferers experienced very little self-blame or lowered self-esteem. Instead those in the CFS group who satisfied criteria for depression did so largely by virtue of mood change together with weight, appetite and sleep disturbance, somatic symptoms and anhedonia.
Powell R, Dolan R, Wessely S. Attributions and self esteem in depression and the chronic fatigue syndrome. J Psychosomatic Res 1990; 34: 665-673.

Previous views that CFS is simply a form of somatized depression are no longer tenable.
Wessely S. The measurement of fatigue and chronic fatigue syndrome. J Roy Soc Med 1992; 85; 189-190.

The main difference between CFS and the major psychiatric disorders is neither aetiological, nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry.
The National Archives of the UK: Public Record Office (PRO) BN 141/1, 1 October 1993 Wessely to Aylward, pp 17-18.

It seems likely that the greater the disability, the more likely is the disorder to be associated with either misdiagnosed psychiatric disorder or poor illness management. Many are iatrogenic ie Doctors contribute in perpetuating the disease and its symptoms.
The National Archives of the UK: Public Record Office (PRO) BN 141/1, October or November 1993 McGrath Summarizing Talk by Thomas and Wessely, pp 6-8, 10.

Another possibility is that patients who fulfill the criteria for chronic fatigue syndrome have a psychiatric illness which predominantly manifests as fatigue. In favour of this is the fact that many depressed patients often report physical symptoms similar to those of chronic fatigue syndrome. The presence of a psychiatric disorder before the presentation of fatigue would be consistent with this.
Bonner D, Butler S, Chalder T, Ron M, Wessely S. A follow up study of chronic fatigue syndrome. J Neurol, Neurosurg & Psychiatry 1994;57: 617-621.

. . . both chills and fevers are in fact, not uncommon presentations of psychiatric disorder.
Wessely S. Neurasthenia and chronic fatigue syndrome: theory and practice. Transcultural Psychiatric Review 1994;31:173-209.

In conclusion, we have demonstrated impaired prolactin responsiveness to metabolic stress in chronic fatigue syndrome, which cannot be explained by any concurrent depression. Neuroendocrine responses to d-fenfluramine provide evidence for impairment of adrenal cortical function. This study thus provides further evidence for hypothalamic dysfunction in chronic fatigue syndrome.
Bearn J, Allain T, Coskaran P, Miell J, Butler J, McGregor A, Wessely S. Neuroendocrine responses to D-fenfluramine and insulin induced hypoglycaemia in chronic fatigue syndrome. Biological Psychiatry 1995;37:245-252.

The consequence of physical disease cannot alone account for the clinical features of CFS.
Wessely S. Social and cultural aspects of CFS. J Musculoskeletal Pain 1995;3:111-122.

Chronic fatigue syndrome and psychiatric disorder go together.
Wessely S. Social and cultural aspects of CFS. J Musculoskeletal Pain 1995;3:111-122.

Operational criteria will be unable to make a complete distinction between CFS and psychiatrid disorders. To understand these differences once [sic] must turn to the role of social and cultural factors.
Wessely S. Social and cultural aspects of CFS. J Musculoskeletal Pain 1995;3:111-122.

One purpose of CFS is to give legitimacy to distress that would otherwise be unacceptable to the patient, relative, employer, doctor and insurer. This has many benefits.
Wessely S. Social and cultural aspects of CFS. J Musculoskeletal Pain 1995;3:111-122.

As well as permitting changes to lifestyle, CFS serves as a conduit for social concerns, expressed via the metaphor of illness.
Wessely S. Social and cultural aspects of CFS. J Musculoskeletal Pain 1995;3:111-122.

The opposing responses in CFS and depression may be related to reversed patterns of behavioural dysfunction seen in these conditions.
Cleare A, Bearn J, Allain T, Wessely S, McGregor A, O'Keane V. Contrasting neuroendocrine responses in depression and chronic fatigue syndrome. J Affective Disorder 1995;35:283-289.

Importantly, the CFS and depressed groups differed on all three outcome measures (prolactin response, cortisol response and basal cortisol) after careful matching with controls.
Cleare A, Bearn J, Allain T, Wessely S, McGregor A, O'Keane V. Contrasting neuroendocrine responses in depression and chronic fatigue syndrome. J Affective Disorder 1995;35:283-289.

The demonstration of healthy control responses that fall mid-way between depression and CFS suggests that the neuromodulators measured in this study, HPA axis function and 5-HT neurotransmission, may be pathologically altered in opposite directions in these two conditions.
Cleare A, Bearn J, Allain T, Wessely S, McGregor A, O'Keane V. Contrasting neuroendocrine responses in depression and chronic fatigue syndrome. J Affective Disorder 1995;35:283-289.

These findings suggest that depression and CFS are characterized by an exaggerated and a deficient stress response, respectively.
Cleare A, Bearn J, Allain T, Wessely S, McGregor A, O'Keane V. Contrasting neuroendocrine responses in depression and chronic fatigue syndrome. J Affective Disorder 1995;35:283-289.

. . . there is little evidence from these parallel studies to support the contention that the cognitive deficits in chronic fatigue syndrome reflect a depressive illness.
Joyce E, Blumenthal S, Wessely S. Memory, attention and executive function in chronic fatigue syndrome. J Neurology, Neurosurgery and Psychiatry 1996;60:495-503

Most subjects with chronic fatigue or chronic fatigue syndrome in primary care also meet criteria for a current psychiatric disorder.
Wessely S, Chalder T, Hirsch S, Wallace P, Wright D. Psychological symptoms, somatic symptoms and psychiatric disorder in chronic fatigue and chronic fatigue syndrome-a prospective study in primary care. Am J Psychiatry 1996;153:1050-1059

. . . both length of illness and referral to a specialist unit may be associated with increased psychiatric disorder.
Wessely S, Chalder T, Hirsch S, Wallace P, Wright D. Psychological symptoms, somatic symptoms and psychiatric disorder in chronic fatigue and chronic fatigue syndrome-a prospective study in primary care. Am J Psychiatry 1996;153:1050-1059

Functional impairment was profound and was associated with psychological disorder.
Wessely S, Chalder T, Hirsch S, Wallace P, Wright D. The epidemiology of chronic fatigue and chronic fatigue syndrome - a primary care study. Am J Public Health 1997:87:1449-1455

. . . 4.1% of the sample were subjects with CF without current psychological disorder. Using the results of the psychological questionnaire (the GHQ) gave a figure of 3.0% for CF in the absence of psychological disorder.
Wessely S, Chalder T, Hirsch S, Wallace P, Wright D. The epidemiology of chronic fatigue and chronic fatigue syndrome - a primary care study. Am J Public Health 1997:87:1449-1455

We also noted that functional impairment was closely related to psychological morbidity. A similar link between psychological comorbidity and functional impairment was noted in the multinational World Health Organization study of mental disorder in primary care patients, which used the International Classification of Diseases (10th revision) diagnosis of neurasthenia, a concept with many similarities to CFS.
Wessely S, Chalder T, Hirsch S, Wallace P, Wright D. The epidemiology of chronic fatigue and chronic fatigue syndrome - a primary care study. Am J Public Health 1997:87:1449-1455

 

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MENTAL ILLNESS - INVOLVEMENT AND COMPARISON Part II

The assessment of possible comorbid psychiatric disorders such as depression or anxiety is mandatory.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

CFS is a relatively new diagnostic label, but the syndrome itself is far from new and was clearly described 100 years ago under the diagnosis of neurasthenia.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Systematic neuropsychological testing does not, however, confirm any particular disorder of memory, and objective impairment rarely matches the severity of the subjective complaints. Instead, the most consistent pattern observed is an impairment of selective attention leading to difficulties with effort that parallel the increased effort with physical exercise.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

In our experience care must be taken in accepting previous labels-illnesses described as ‘Epstein-Barr virus infection’ may, on detailed inquiry, be better described as major depressive disorder.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Suicide is the only cause of death in CFS.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Patients may report ceasing certain activities such as shopping or socializing because of fatigue, but careful inquiry may reveal a possible phobic basis to such symptoms.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

Although many patients will be described as having undifferentiated somatoform disorder this diagnosis has no specific implications for treatment; hypochondriasis and somatization disorder do, however, and are therefore worth seeking.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

. . . researchers recently reported an apparently paradoxical result in the context of CFS. Greater marital satisfaction was associated with more fatigue-the presumed link being via overprotective and oversolicitous behaviors.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

The association of HPA dysregulation with depressive illness, the commonest psychiatric disorder associated with CFS, is well known.
Wood B, Wessely S, Papadopolous A, Poon L, Checkley S. Salivary cortisol profiles in chronic fatigue syndrome. Neuropsychobiology 1998:37:1-4

The association between fatigue and common psychiatric disorders has always been controversial. There is no question that the association exists, with patients with CFS experiencing approximately twice as much psychiatric disorder as controls with medical illness.
Hotopf M, Wessely S. Chronic fatigue syndrome; mapping the interior. Psych Med 1999:29:255-258

About 50% of patients with chronic fatigue syndrome have co-morbid major depression.
Cleare A, Heap E, Malhi G, Wessely S, O’Keane, V, Miell J. Low dose hydrocortisone in chronic fatigue syndrome: a randomised crossover trial. Lancet 1999;353:455-458

The data are consistent with the existence of 'pure' independent fatigue state. However, this state is unstable and the majority (about three-quarters) of patients become well or a case of psychiatric disorder over 6 months. A persistent, independent fatigue state lasting for 6 months can be identified in the primary-care setting, but it is uncommon - of the order of 2.5%.
Van der Linden G, Chalder T, Hickie I, Koschera A, Sham P, Wessely S. Fatigue and psychiatric disorder: associations and outcome in primary care. Psych Med 1999:29:863-868

Around three-quarters of primary-care attenders with chronic fatigue can be given a diagnosis of psychiatric disorder, while in specialist care approximately three-quarters of patients seen with a diagnosis of one of the variously defined chronic fatigue syndromes also meet criteria for a psychiatric disorder - chiefly depressive disorder in half and anxiety or somatization disorders in the remaining quarter.
Van der Linden G, Chalder T, Hickie I, Koschera A, Sham P, Wessely S. Fatigue and psychiatric disorder: associations and outcome in primary care. Psych Med 1999:29:863-868

Our finding of a high correlation between fatigue and psychological morbidity implies that, when symptomatic, many patients have symptoms of fatigue and psychiatric disorder.
Van der Linden G, Chalder T, Hickie I, Koschera A, Sham P, Wessely S. Fatigue and psychiatric disorder: associations and outcome in primary care. Psych Med 1999:29:863-868

Most patients with persistent fatigue also have psychiatric disorder.
Van der Linden G, Chalder T, Hickie I, Koschera A, Sham P, Wessely S. Fatigue and psychiatric disorder: associations and outcome in primary care. Psych Med 1999:29:863-868

No differences were found between CFS and RA patients in measures of perfectionism, attitudes toward mental illness, defensiveness, social desirability, or sensitivity to punishment (a concept related to neuroticism), on either crude or adjusted analyses. Alexithymia scores were greater in the RA patient group.
Wood B, Wessely S. Personality and social attitudes in chronic fatigue syndrome J Psychosom Med 1999:47:385-397

Considerable attention has been paid to the role of psychiatric illness in CFS. Although psychiatric disorders are clearly important, their precise contribution remains unclear. However, depressive and anxiety states, both current and in the past histories of CFS sufferers, seem to be particularly relevant.
Wood B, Wessely S. Personality and social attitudes in chronic fatigue syndrome J Psychosom Med 1999:47:385-397

Lack of significant personality differences in our CFS patients may therefore reflect our own observation that the rates of depressive disorder in our CFS clinic have been decreasing over time, perhaps reflecting better recognition and/or treatment of depressive disorders by general practitioners.
Wood B, Wessely S. Personality and social attitudes in chronic fatigue syndrome J Psychosom Med 1999:47:385-397

We conclude that this sample of CFS patients is not characterized by any of the personality traits suggested in the popular literature on the condition, when compared with patients suffering a physically disabling illness of established physical etiology.
Wood B, Wessely S. Personality and social attitudes in chronic fatigue syndrome J Psychosom Med 1999:47:385-397

Many studies have confirmed an association between CFS and psychiatric disorder, regardless of definition, setting or methodology; these conclusions apply also to community-based surveys and are not attributable to selection bias. The association is too close to be explained as a reaction to physical disability, while prospective studies suggest that pre-existing psychiatric disorder is a risk factor for the subsequent development of CFS.
Wessely S, Showalter E. Chronic fatigue syndrome : a true illness or a social and political issue? In: Horizons in Medicine, Vol 10 (ed G Williams), London, Royal College of Physicians 1999, 501-516.

Approaching 100 percent of subjects with CFS or MCS were cases on the [psychiatric] General Health Questionnaire.
Reid S, Hotopf M, Hull L, Ismail K, Unwin C, David A, Wessely S. Chronic fatigue syndrome and multiple chemical sensitivity in UK Gulf war veterans. Am J Epidemiology 2001:153:604-609

Urinary free cortisol was significantly lower in the subjects with chronic fatigue syndrome regardless of the presence or absence of current or past comorbid psychiatric illness. Lower levels of urinary free cortisol were not related to medication use, sleep disturbance, or disability levels.
Cleare A, Blair D, Chambers S, Wessely S . Urinary free cortisol in chronic fatigue syndrome. Am J Psychiatry 2001: 158: 641-643

The greater the number of symptoms and the greater the perceived disability, the more likely clinicians are to identify psychological, behavioral, or social contributors to illness.
Wessely S. Chronic Fatigue: Symptom and Syndrome? Annals Int Med 2001:134:838-843

This increased effort is the not the result of increased neuromuscular or metabolic demands (a Victorian concept), and it doesn’t usually result in any substantial decline in actual muscle or cognitive performance. The result is a mismatch between a patient’s evaluation of his or her physical and mental functioning and the external evidence of any consistent deficits.
Wessely S. Chronic Fatigue: Symptom and Syndrome? Annals Int Med 2001:134:838-843

While psychiatrists have been keen to emphasize its close relation to psychiatric disorders - depression is present in about 50% - sufferers often maintain that their fatigue has a solely physical cause, perhaps viral.
Parker A, Wessely S, Cleare A. The neuroendocrinology of chronic fatigue syndrome and fibromyalgia. Psychological Medicine 2001:31:1331-1345

Many depressed patients complain of prolonged fatigue and depression is very common in CFS populations.
Reid S, Wessely S. Chronic fatigue syndrome. Conn’s Current Therapy (ed Rakel, Bope). Saunders, 2002, 110-113

CFS is more common in patients who have had previous psychiatric illness.
Wessely S, Chronic fatigue syndrome. Psychiatry 2003: 2; 20-23

Most patients who fulfil the criteria for CFS seen in specialist care also fulfil criteria for a variety of psychiatric illnesses. The greater the number of somatic symptoms, the greater the risk of psychiatric disorder.
Wessely S, Chronic fatigue syndrome. Psychiatry 2003: 2; 20-23

A few authorities now classify CFS as a form of atypical depression.
Wessely S, Chronic fatigue syndrome. Psychiatry 2003: 2; 20-23

[From Chart] Psychiatric diagnoses in a hospital sample of patients with chronic fatigue syndrome. Major depression (50%), No psychiatric diagnosis (23%), Somatization (13%), Minor depression (6%), Anxiety disorder (4%), Phobia (2%), Conversion disorder (2%).
Wessely S, Chronic fatigue syndrome. Psychiatry 2003: 2; 20-23

Patients with the highest number of MUS [Medically Unexplained Symptoms] are likely to fulfil the psychiatric criteria for somatization disorder—at least 2 years of multiple and various MUS, with persistent refusal to accept advice and reassurance from doctors; functioning impaired.
Page L, Wessely S. Medically unexplained symptoms: exacerbating factors in the doctor-patient encounter. J Royal Soc Medicine 2003: 96: 223-227

Our data supports the anecdotal belief that chronic fatigue syndrome patients reduce or cease alcohol intake. This is associated with greater impairment in employment, leisure and social domains of function, and may hint at psycho-pathophysiological processes in common with other conditions that result in alcohol intolerance.
Woolley J, Allen R, Wessely S. Alcohol use in chronic fatigue syndrome. J Psychosom Res 2004: 56: 203-206

Because the available evidence suggests that the atypical subtype of depression may be associated also with lowered HPA axis function, and has fatigue (or ‘leaden paralysis’) as a prominent symptom, the emerging evidence is that the depression seen in CFS is more in keeping both biologically and phenomenologically with that subtype.
Roberts, A. W. S., Chalder T, Papdopolous A, Cleare AJ, (2004) Salivary cortisol response to awakening in chronic fatigue syndrome. British Journal of Psychiatry, 184, 136-141.

It has been suggested that some individuals may use overactivity as a coping strategy to avoid painful emotions or to maintain self-esteem. Such individuals may be more prone to somatic attributions, especially at times when other factors, such as increasing age or recovery from a physical illness, limit their ability to exercise.
Harvey S, Wadsworth M, Wessely S, Hotopf M, The aetiology of chronic fatigue syndrome; testing popular hypotheses using a National Birth Cohort. Psychosomatic Medicine 2008: 70: 488-495

The DSM-IV does not mention these conditions at all, but the concepts/descriptions imply that they belong within the somatoform disorder category, not least because nearly every patient will fulfil criteria for the unsatisfactory and largely ignored category of undifferentiated somatoform disorder.
Leone S, Wessely S, Huibers M, Knottnerus J, Kant U. Two sides of the same coin? On the history and phenonomology of burnout. Psychology & Health 2011: 26: 449-464.

. . . it made sense, by which I mean that it fitted with what many clinicians already felt, that this was a genuine condition, which bore more relationship to disorders such as depression than neuropathy or myopathy.
Wessely, S. The nature of fatigue: a comparison of chronic “postviral” fatigue with neuromuscular and affective disorders. J Neurol Neurosurg Psychiatry 2012, 83: 4-5

 

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CRITERIA, DEFINITIONS, DIAGNOSIS, AND CLASSIFICATIONS

We suggest that many patients currently labelled as having "chronic fatigue syndrome" may not be cases of a discrete disorder, but instead may lie at the extreme end of a continuum that begins with the common feeling of tiredness described in community surveys.
Lewis G, Wessely S. The Epidemiology of Fatigue: More Questions than Answers. J Epidem Comm Health 1992; 46; 92-97.

. . . although many might agree that 'one advance that would clarify this issue would be the ability to document weakness in patients objectively', this is an unattainable Holy Grail. Instead, researchers should be concentrating on reliable ways of measuring subjective fatigue, which is what the patient complains of. Both papers use visual analogues to measure the individual's sense of fatigue throughout the day.
Wessely S. The measurement of fatigue and chronic fatigue syndrome. J Roy Soc Med 1992; 85; 189-190.

Until proven otherwise, I will argue that fatigue syndromes such as CFS and neurasthenia are arbitrarily created syndromes that lie at the extreme end of the spectrum of fatigue.
Wessely S. Neurasthenia and chronic fatigue syndrome: theory and practice. Transcultural Psychiatric Review 1994;31:173-209.

. . . the current criteria used for chronic fatigue syndrome introduce a number of restrictions on the diagnosis to create an arbitrary division between symptom and syndrome.
Wessely S. Neurasthenia and chronic fatigue syndrome: theory and practice. Transcultural Psychiatric Review 1994;31:173-209.

. . . the true successor to neurasthenia only appeared in the 1980s, with the arrival of chronic fatigue syndrome (CFS).
Wessely S. Neurasthenia and chronic fatigue syndrome: theory and practice. Transcultural Psychiatric Review 1994;31:173-209.

In our clinic, and in our studies, we find that the presence or absence of sufficient evidence to make an operational diagnosis of depressive syndrome is not particularly relevant as regards effective management or prognosis, unlike knowledge of illness beliefs, background and coping strategies.
Wessely S. Neurasthenia and chronic fatigue syndrome: theory and practice. Transcultural Psychiatric Review 1994;31:173-209.

The chronic fatigue syndrome, defined only by symptoms, disability, and duration, may represent a morbid excess of fatigue rather than a discrete entity, just as high blood pressure and alcohol consumption are morbid ends of normal spectrums. Hence the definition may have arisen as a result of referral patterns to specialists.
Pawlikowska T, Chalder T, Hirsch S, Wallace P, Wright D, Wessely S. A population based study of fatigue and psychological distress. Br Med J 1994;308: 743-746.

CFS in current medical practice is noncontagious, fatiguing, without neurologic signs, and of poor prognosis.
Wessely S. The epidemiology of chronic fatigue syndrome. Epidemiologic Reviews 1995; 17:139-151.

As an epiemiologist, I know that a person has CFS only if they fulfill operational criteria. As an observer of the social scene, I also know that ME or CFIDS is defined by the sufferers themselves. Hence, for this paper, a person has ME or CFIDS simply if that is what they believe is wrong with them.
Wessely S. Social and cultural aspects of CFS. J Musculoskeletal Pain 1995;3:111-122.

We thus found no epidemiological justification for stating that certain symptoms are characteristic of chronic fatigue syndrome (and hence form part of the case definition) solely because they resemble those of an infective or immunological disorder held to underlie chronic fatigue syndrome. Most symptoms may instead reflect the joint experience of somatic and psychological distress.
Wessely S, Chalder T, Hirsch S, Wallace P, Wright D. Psychological symptoms, somatic symptoms and psychiatric disorder in chronic fatigue and chronic fatigue syndrome-a prospective study in primary care. Am J Psychiatry 1996;153:1050-1059

The stated desire of all of the current chronic fatigue syndrome case definitions is to attempt to isolate a pure syndrome distinct from other medical or psychiatric categories. We suggest that the current chronic fatigue syndrome case definitions instead achieve the opposite of the intended objective. By insisting on a minimum symptom requirement, these definitions actively select subjects at increased risk of psychiatric disorder.
Wessely S, Chalder T, Hirsch S, Wallace P, Wright D. Psychological symptoms, somatic symptoms and psychiatric disorder in chronic fatigue and chronic fatigue syndrome-a prospective study in primary care. Am J Psychiatry 1996;153:1050-1059

Outcome assessment depended largely on self-rated outcome measures. However, no objective measures exist for subjectively experienced fatigue, disability, and mood disturbance, which are the areas of interest in chronic fatigue syndrome.
Deale A, Chalder T, Marks I, Wessely S. A randomised controlled trial of cognitive behaviour therapy for chronic fatigue syndrome. Am J Psychiatry 1997;154:408-414.

We have already noted that no difference was found between the two cohorts in the risk of CF and CFS. We therefore felt justified in combining the two cohorts for the purpose of increased power. . . .
Wessely S, Chalder T, Hirsch S, Wallace P, Wright D. The epidemiology of chronic fatigue and chronic fatigue syndrome - a primary care study. Am J Public Health 1997:87:1449-1455

Given the difficulty of defining the phenotype, it is probably more sensible to start with the genetics of the principal symptom, fatigue. . . .
Hotopf M, Wessely S. Chronic fatigue syndrome; mapping the interior. Psych Med 1999:29:255-258

We postulate that the existence of specific somatic syndromes is largely an artefact of medical specialisation.
Wessely S, Nimnuan C, Sharpe M. Functional somatic syndromes - one or many? Lancet 1999;354:939-939

Various names have been given to medically unexplained symptoms. These include somatisation, somatoform disorders, medically unexplained symptoms, and functional somatic symptoms.
Wessely S, Nimnuan C, Sharpe M. Functional somatic syndromes - one or many? Lancet 1999;354:939-939

I have a particular fascination with the history of neurasthenia, which I think is now accepted as the precursor of CFS/ME. The parallels between neurasthenia and CFS are many and inescapable.
Wessely S. “To tell or not to tell”: The problem of medically unexplained symptoms. In ; Ethical Dilemmas in Neurology (eds Zeman & Emanuel), WB Saunders, 1999, 41-53

Small changes in the wording used to ask patients about fatigue or postexertional malaise can profoundly affect prevalence.
Wessely S. Chronic Fatigue: Symptom and Syndrome? Annals Int Med 2001:134:838-843

When we try to establish the cause of the problem, we may make more progress by going back to the basic pathophysiology of chronic fatigue and related symptoms.
Wessely S. Chronic Fatigue: Symptom and Syndrome? Annals Int Med 2001:134:838-843

The medical specialties employ shorthand descriptions for particular clusters of MUS [Medically Unexplained Symptoms] including irritable bowel syndrome, noncardiac chest pain, fibromyalgia, chronic fatigue syndrome and repetitive strain injury.
Page L, Wessely S. Medically unexplained symptoms: exacerbating factors in the doctor-patient encounter. J Royal Soc Medicine 2003: 96: 223-227

Today’s modern society seems to dictate constant activity, speed and scheduledness. CFS patients of course cannot meet these expectancies, and in numerous first-person accounts illness is blamed on these unwelcome features of modern life. Like it or not, CFS is not simply an illness, but a cultural phenomenon and metaphor of our times.
Huibers M, Wessely S. The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 2006: 36

The use of self-reported CFS may provide some additional benefits. Fatigue is a subjective experience that is difficult to define and therefore difficult to measure. Any attempt to use structured diagnostic interviews may have led to a failure to capture the phenomena of patients who complain of fatigue in a clinical setting.
Harvey S, Wadsworth M, Wessely S, Hotopf M, The aetiology of chronic fatigue syndrome; testing popular hypotheses using a National Birth Cohort. Psychosomatic Medicine 2008: 70: 488-495

Previous studies have shown that as additional somatic symptoms are added to the diagnostic criteria for fatigue syndromes, the association with psychiatric disorders increases. It is therefore likely that the relative incidence of comorbid fatigue and psychiatric disorder would be significantly higher if associated somatic symptoms or disability was required for a diagnosis.
Harvey S, Wessely S, Kuh D, Hotopf M. The relationship between fatigue and psychiatric disorders: evidence for the concept of neurasthenia. J Psychosom Res 2009; 66: 445-454.

Chronic fatigue syndrome (CFS) is a debilitating condition characterized by unexplained fatigue that lasts for at least 6 months, accompanied by symptoms including headaches, unrefreshing sleep, muscle pain and cognitive difficulties such as memory and concentration problems.
Dinos S, Khoshaba B, Ashby D, White P, Nazroo J, Wessely S, Bhui K.. A systematic review of chronic fatigue, its syndromes and ethnicity: prevalence, severity, comorbidity and coping. Int J Epidemiology 2009: 38: 1554-1570

At present, and despite much effort, there are no investigative tools or physical signs that can confirm the presence of CFS and it remains a diagnosis of exclusion.
Harvey S, Wessely S. Chronic fatigue syndrome: identifying zebras amongst the horses. BMC Medicine 2009: 7: 58

There is also evidence that behaviourally focused interventions are some of the most effective ways of reducing fatigue, even when there is a clear underlying cause, such as rheumatoid arthritis, multiple sclerosis or cancer. Thus, it may be that the divide between fatigue secondary to diagnosed medical problems and CFS may be need to be made more permeable, with some relaxing of the exclusion criteria in diagnostic guidelines for CFS. This may allow a greater use of evidence-based treatments developed for treating CFS amongst those with an apparent medical or psychiatric cause of their fatigue.
Harvey S, Wessely S. Chronic fatigue syndrome: identifying zebras amongst the horses. BMC Medicine 2009: 7: 58

Chronic fatigue syndrome (CFS), sometimes also called myalgic encephalomyelitis, is a debilitating condition characterised by unexplained fatigue that lasts for at least 6 months alongside other symptoms that are required for a diagnosis of CFS: headaches, unrefreshing sleep, muscle pain and memory and concentration problems.
Bhui K, Dinos S, Ashby D, Nazroo J, Wessely S, White P. Chronic fatigue syndrome in an ethnically diverse population: the influence of psychosocial adversity & physical inactivity. BMC Medicine 2011: 9; 26

As well as symptoms, burnout and CFS also share similar themes such as an overload process triggering illness onset, the need for restoration of depleted energy, external causal attributions and the characteristics of people suffering from these illnesses.
Leone S, Wessely S, Huibers M, Knottnerus J, Kant U. Two sides of the same coin? On the history and phenonomology of burnout. Psychology & Health 2011: 26: 449-464.

If the work-relatedness was left out of the equation then burnout would indeed equate to CFS or fatigue, not least given the 96% overlap between CFS and neurasthenia, for example, reported from one CFS clinic.
Leone S, Wessely S, Huibers M, Knottnerus J, Kant U. Two sides of the same coin? On the history and phenonomology of burnout. Psychology & Health 2011: 26: 449-464.

In a sense, the conclusion of this essay could be that, irrespective of ‘objective’ findings, burnout and CFS are different simply because they are perceived to be different.
Leone S, Wessely S, Huibers M, Knottnerus J, Kant U. Two sides of the same coin? On the history and phenonomology of burnout. Psychology & Health 2011: 26: 449-464.

Functional somatic disorders (FSDs) are syndromes of related physical complaints without known underlying conventional organic pathology. The main three disorders are chronic fatigue syndrome (CFS), fibromyalgia (FM), and irritable bowel syndrome (IBS); other examples include temporomandibular joint dysfunction, multiple chemical sensitivity and chronic pelvic pain.
Tak L, Cleare A, Ormel J, Manoharan A, Kok I, Wessely S, Rosmalen J. Meta-analysis and meta-regression of HPA –axis activity in functional somatic disorders. Biological Psychology 2011: 87: 183-194

Likewise, there is probably a fairly broad consensus among clinicians and academics, with only a very small but vocal minority giving an impression of polarization within the field.
Holgate S, Komaroff A, Mangin D, Wessely S. Chronic fatigue syndrome: understanding a complex illness. Nature Reviews Neuroscience 2001: 27 July 2011; doi:10.1038/nrn3087

Adding more symptoms, such as sensitivity to noise or light, to the current case definition makes the association with recognized psychiatric disorders stronger, not weaker as some mistakenly believe.
Holgate S, Komaroff A, Mangin D, Wessely S. Chronic fatigue syndrome: understanding a complex illness. Nature Reviews Neuroscience 2001: 27 July 2011; doi:10.1038/nrn3087

If one accepts, as most neurologists do, that some of the signs and symptoms that are held by the Canadian consensus criteria to be incompatible with a diagnosis of ME/CFS, then the adoption of those same criteria by the ScotPHN Health Care Needs Assessment Group encourages poor practice and would, if implemented, have a detrimental impact on patient care.
Smith Ch, Wessely S. Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. JNNP 2012.

Attempting to synthesise patient views into the discourse regarding which criteria should be used to identify patients clinically has led to dangerous criteria being adopted, which increases the risk of misdiagnosis with all that might imply.
Smith Ch, Wessely S. Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. JNNP 2012.

 

[Valentijn]

EPIDEMIOLOGY

Chronic fatigue was common. A total of 23 percent of the subjects reported having experienced the symptom of persistent fatigue sometime during their lives. Chronic fatigue syndrome, however, as defined by the Centers for Disease Control, appeared to be quite rare in the general population. Only 1 of 13,538 people examined was found to meet a diagnosis of the syndrome with an approximation of the CDC criteria.
Price R, North C, Fraser V, Wessely S. The prevalence estimates of CFS and associated symptoms in the Community. Public Health Rep 1992; 107;514-522.

Women were more fatigued than men. Women also had more psychological disorder than men, but this finding did not explain the excess of fatigue in women.
Pawlikowska T, Chalder T, Hirsch S, Wallace P, Wright D, Wessely S. A population based study of fatigue and psychological distress. Br Med J 1994;308: 743-746.

. . . self diagnosis of the chronic fatigue syndrome is extremely uncommon even among those with fatigue, accounting for only 1% of those with significant fatigue and 0.2% of the entire sample. Self diagnosis of the syndrome was associated with being female, high social class, and high levels of both fatigue and psychological morbidity.
Pawlikowska T, Chalder T, Hirsch S, Wallace P, Wright D, Wessely S. A population based study of fatigue and psychological distress. Br Med J 1994;308: 743-746.

. . . 38% of the sample complained of excessive fatigue, but in only 1% had this lasted for more than six months, been experienced all the time, and been associated with myalgia. Among this group 90% were probable cases of psychiatric disorder, and women were over represented.
Pawlikowska T, Chalder T, Hirsch S, Wallace P, Wright D, Wessely S. A population based study of fatigue and psychological distress. Br Med J 1994;308: 743-746.

It would be tedious to list all of the studies which have found that CFS patients visiting specialist care centers or self-help groups are more likely to come from upper socioeconomic strata. The self-diagnosis of CFS is associated with social class and with certain professions, particularly health care and teaching, while ethnic minorities seem to be underrepresented.
Wessely S. The epidemiology of chronic fatigue syndrome. Epidemiologic Reviews 1995; 17:139-151.

I know of no population-based study that has not found chronic fatigue to be associated with a range of variables: demographic, social, cultural, physical, behavioral, and psychological.
Wessely S. Chronic Fatigue: Symptom and Syndrome? Annals Int Med 2001:134:838-843

The primary care prevalence of chronic fatigue syndrome was similar in two culturally and economically distinct nations. However, doctors are unlikely to recognise and label chronic fatigue syndrome as a discrete disorder in Brazil. The recognition of this illness rather than the illness itself may be culturally induced.
Cho, H. J., Menezes, P. R., Hotopf, M., Wessely S The comparative epidemiology of chronic fatigue between Brazilian and British primary care - Prevalence, reporting, recognition and labelling. Br J Psychiatry 2009: 194;117-122

 

[Valentijn]

DISABILITY PAYMENTS AND CARER ASSISTANCE

Sickness benefits....At present individual [CFS] cases should be treated on their merits, but it is reasonable to expect a patient to cooperate with treatment before being labelled as chronically disabled.
Wessely S, David A, Butler S, Chalder T. The Management of the Chronic Postviral Fatigue Syndrome. J Roy Coll General Practitioners 1989; 39: 26-29.

. . . the interventions of professional carers may perpetuate disability by teaching patients to attribute impairment to pain.
Powell R, Dolan R, Wessely S. Attributions and self esteem in depression and the chronic fatigue syndrome. J Psychosomatic Res 1990; 34: 665-673.

As regards benefits:- it is important to avoid anything that suggests that disability is permanent, progressive, or unchanging. Benefits can often make patients worse.
The National Archives of the UK: Public Record Office (PRO) BN 141/1, October or November 1993 McGrath Summarizing Talk by Thomas and Wessely, pp 6-8, 10.

Poor outcome was associated with taking medical retirement or making a new claim for a disability-related benefit during (but not before) treatment. . . .
Deale A, Chalder T, Marks I, Wessely S. A randomised controlled trial of cognitive behaviour therapy for chronic fatigue syndrome. Am J Psychiatry 1997;154:408-414.

When asked to comment on benefits or insurance claims we support the patient as much as is possible, but do not support claims for permanent disability or medical retirement until all reasonable efforts at rehabilitation have been tried.
Sharpe M, Chalder T, Palmer I, Wessely S. Assessment and management of chronic fatigue syndrome. General Hospital Psychiatry 1997:19:185-199

According to operant models carers may inadvertently reinforce unhelpful behaviour (e.g. excessive rest) by focusing on expressions of fatigue. Such behaviour may be related to carers' own attributions regarding CFS or a tendency to attribute somatically.
Butler J, Chalder T, Wessely S. Casual attributions for somatic sensations in patients with CFS and their partners. Psychological Medicine 2001: 31: 97-105

 

[Hoopoe]

Finally, it should be noted that our conclusions are primarily based on common sense, in the absence of a sound evidence base.

Which is just a nice way to say: this is how we want this illness to be viewed and treated, even if we have no proof that it makes any sense.

 

[duncan]

This is a remarkable compilation that must have taken a long time and a lot of effort. Thank you, @Valentijn .

 

[Valentijn]

This is a remarkable compilation that must have taken a long time and a lot of effort. Thank you, @Valentijn .

It was about 5 years ago, but I'm pretty sure I lost my sanity several times in the process of reading Simon Wessely's life's work

 

[Viola]

Hi @Valentijn Could you group these quotes in sections with headers so that they are easier to find when looking for something relevant? Eg. Some comments will be about secondary illness gain, some about deconditioning, some about not running tests on patients and so on. Great compilation.

 

[Hell..hath..no..fury...]

When i first started reading them i thought it was a joke/interpretation thing.

Then as i scrolled down I realised I changed my opinion to just a joke

Amazing work @Valentijn

 

[Hell..hath..no..fury...]

It was about 5 years ago, but I'm pretty sure I lost my sanity several times in the process of reading Simon Wessely's life's work

Not to worry, a quick dose of CBT will fix that in no time easy peasy.

 

[arewenearlythereyet]

Wow put together it really shows up quite a dammimg profile. And that's before you add in all the patronising tweets etc.

I suppose you could also do a mega thread on contradictions where he says one thing in his paper and another to the media?

Looking forward to the Crawley one next.

 

[Trish]

I started reading all this yesterday and had to stop after a while. It's so depressing. And amazing piece of work, @Valentijn, putting it all together.

It really is astounding that one man can make up a theory 30 years ago and stick with it through so much 'research' by twisting every bit of data to pretend it supports his theory. Can he really still be so blinkered as to believe he is right?