Goals
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.
Format and Content
Until that happens, I do expect these pages to be something of a mess. One post at the beginning of the thread (the one after this post, most likely), will be updated to contain the current list of quotes that are suitably relevant, accurate, appropriately cited, and contextual enough to be comprehensible. Quotes shouldn't be overly long. 1 sentence is ideal, though of course sometimes a few more sentences may be necessary to provide context. Anything longer than a typical paragraph is probably less suitable.
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.
EDIT: 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.
EDIT #2: The quotes don't all fit into one post (character limit isn't high enough), so some categories are being added to the end of this post instead.
BIOLOGICAL INVESTIGATION AND TREATMENT
DISABILITY PAYMENTS AND CARER ASSISTANCE
CAUSE AND PERPETUATION
PROGNOSIS AND OUTCOME
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.
Format and Content
Until that happens, I do expect these pages to be something of a mess. One post at the beginning of the thread (the one after this post, most likely), will be updated to contain the current list of quotes that are suitably relevant, accurate, appropriately cited, and contextual enough to be comprehensible. Quotes shouldn't be overly long. 1 sentence is ideal, though of course sometimes a few more sentences may be necessary to provide context. Anything longer than a typical paragraph is probably less suitable.
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.
EDIT: 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.
EDIT #2: The quotes don't all fit into one post (character limit isn't high enough), so some categories are being added to the end of this post instead.
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
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
CAUSE AND PERPETUATION
...[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
. . . 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.
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