Tag: false illness beliefs

Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al

Abstract:

The narrative which is presented by Miller et al. as new, has dominated the field of ME/CFS for the last 35 years. It has been tested by numerous studies and has been found to be ineffective and harmful, as concluded by for example NICE in 2021. Additionally, it does not lead to objective improvement and it has a negative instead of a positive effect on work and disability status.

What has happened over the last 35 years is that severely ill patients have been ridiculed, gaslit and ignored by the medical profession. These patients have lost hope in the part of the medical profession which has been instrumental in doing and promoting that. They have not lost hope to recover and they are all hoping to get effective pharmacological treatments sooner rather than later as changing their mindset does not lead to recovery. And if it does, then the diagnosis of ME/CFS was simply wrong.

Source: Vink, Mark and Vink-Niese, Friso, Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al. (June 06, 2025). No., Available at SSRN: https://ssrn.com/abstract=5284667 https://papers.ssrn.com/sol3/papers.cfm?abstract_id=5284667 (Full text available as PDF file)

Prevalence and predictors of recovery from chronic fatigue syndrome in a routine clinical practice

Abstract:

Cognitive behavioural therapy (CBT) is one of the treatments of choice for patients with chronic fatigue syndrome (CFS). However, the factors that predict recovery are unknown. The objective of this study was to ascertain the recovery rate among CFS patients receiving CBT in routine practice and to explore possible predictors of recovery.

Recovery was defined as no longer meeting Oxford or CDC criteria for CFS measured at 6 months follow-up. A composite score representing full recovery additionally included the perception of improvement, and normal population levels of fatigue and of physical functioning. Logistic regression was used to examine predictors of recovery.

Predictors included age, gender, cognitive and behavioural responses to symptoms, work and social adjustment, beliefs about emotions, perfectionism, anxiety and depression at baseline. At 6 months follow-up 37.5% of the patients no longer met either the Oxford or the CDC criteria for CFS while 18.3% were fully recovered.

Multivariate analyses showed that worse scores on the work and social adjustment scale, unhelpful beliefs about emotions, high levels of depression and older age were associated with reduced odds for recovery. Recovery rates in this routine practice were comparable to previous RCTs. There was a wide spectrum of significant predictors for recovery.

Copyright © 2014 The Authors. Published by Elsevier Ltd.. All rights reserved.

 

Source: Flo E, Chalder T. Prevalence and predictors of recovery from chronic fatigue syndrome in a routine clinical practice. Behav Res Ther. 2014 Dec;63:1-8. doi: 10.1016/j.brat.2014.08.013. Epub 2014 Aug 26. http://www.sciencedirect.com/science/article/pii/S0005796714001429 (Full article)

 

Mediators of the effects on fatigue of pragmatic rehabilitation for chronic fatigue syndrome

Abstract:

OBJECTIVE: To examine potential mediators of the effect of pragmatic rehabilitation on improvements in fatigue following a randomized controlled trial for patients with chronic fatigue syndrome (CFS/ME) in primary care (IRCTN 74156610).

METHOD: Patients fulfilled the Oxford criteria for CFS. Ninety-five patients were randomized to pragmatic rehabilitation and 100 to general practitioner (GP) treatment as usual. The outcome was the Chalder fatigue scale score (0123 scoring) at end of treatment (20 weeks) and 1-year follow up (70 weeks). First, the effect of treatment on potential mediators was assessed. Then fatigue was regressed on significant mediators, treatment allocation, and baseline measures of fatigue and significant mediators.

RESULTS: Reduction in limiting activities at 20 weeks mediated the positive effect of pragmatic rehabilitation on fatigue at 70 weeks (mediated effect size = -2.64, SE = 0.81, p = .001, proportion of effect mediated = 82.0%). Reduction in catastrophizing at 20 weeks mediated the positive effect of pragmatic rehabilitation on fatigue at 70 weeks (mediated effect size = -1.39, SE = 0.61, p = .023, proportion of effect mediated = 43.2%). Reductions in 70-week measures of fear avoidance, embarrassment avoidance, limiting activities, and all-or-nothing behavior all mediated improvement in fatigue at 70 weeks, although the causal direction of these cross-sectional effects cannot be determined. There were no between-group differences on measures of exercise capacity (a timed step test).

CONCLUSIONS: Improvements in fatigue following pragmatic rehabilitation are related to changes in behavioral responses to and beliefs about fatigue.

 

Source: Wearden AJ, Emsley R. Mediators of the effects on fatigue of pragmatic rehabilitation for chronic fatigue syndrome. J Consult Clin Psychol. 2013 Oct;81(5):831-8. doi: 10.1037/a0033561. Epub 2013 Jun 24. https://www.ncbi.nlm.nih.gov/pubmed/23796316

 

The central role of cognitive processes in the perpetuation of chronic fatigue syndrome

Abstract:

OBJECTIVE: Chronic fatigue syndrome (CFS) is considered to be one of the functional somatic syndromes (FSS). Cognitions and behavior are thought to perpetuate the symptoms of CFS. Behavioral interventions based on the existing models of perpetuating factors are quite successful in reducing fatigue and disabilities. The evidence is reviewed that cognitive processes, particularly those that determine the perception of fatigue and its effect on behavior, play a central role in the maintenance of symptoms.

METHOD: Narrative review.

RESULTS: Findings from treatment studies suggest that cognitive factors mediate the positive effect of behavioral interventions on fatigue. Increased fitness or increased physical activity does not seem to mediate the treatment response. Additional evidence for the role of cognitive processes is found in studies comparing the subjective beliefs patients have of their functioning with their actual performance and in neurobiological research.

CONCLUSION: Three different cognitive processes may play a role in the perpetuation of CFS symptoms. The first is a general cognitive representation in which fatigue is perceived as something negative and aversive and CFS is seen as an illness that is difficult to influence. The second process involved is the focusing on fatigue. The third element is formed by specific dysfunctional beliefs about activity and fatigue.

Copyright 2010 Elsevier Inc. All rights reserved.

 

Source: Knoop H, Prins JB, Moss-Morris R, Bleijenberg G. The central role of cognitive processes in the perpetuation of chronic fatigue syndrome. J Psychosom Res. 2010 May;68(5):489-94. doi: 10.1016/j.jpsychores.2010.01.022. Epub 2010 Mar 16. https://www.ncbi.nlm.nih.gov/pubmed/20403509

 

Chronic fatigue syndrome in a cognitive perspective. A therapeutic model

Abstract:

The cognitive approach to the treatment of chronic fatigue syndrome (CSF) is based on a multifactor etiological hypothesis, i.e. inaccurate beliefs and attitudes to the illness interact with pathophysiological processes, ineffective coping behaviours, negative states of mood, social problem, to perpetuate the illness. Patients suffering from CFS are supposed to be hypervigilant to somatic sensations and to interpret them as signs of impending physical catastrophe.

The aim of the this paper is to describe the clinical implementation of principles of cognitive therapy in the treatment of CFS. Basic to the treatment approach is a collaborative, listening and empathic attitude, sensitive to the patient’s personal beliefs and potential threats to self-esteem. The aim is to develop more useful, functional, formulations of the illness. The patient and the therapist work together to look at how the patient thinks about herself/himself and the illness, detect unhelpful attitudes, thoughts and mental images about the illness, and to make them accessible to Socratic reasoning. Graded behavioural interventions are planned in order to disconfirm unhelpful beliefs and reverse the spiral of tiredness, demoralization and reduced activity. The treatment is structured according to the general principles of cognitive therapy.

 

Source: d’Elia G. Chronic fatigue syndrome in a cognitive perspective. A therapeutic model. Lakartidningen. 2004 Jan 29;101(5):358-64. [Article in Swedish] http://www.ncbi.nlm.nih.gov/pubmed/14986443

 

Cognitive behaviour therapy for the chronic fatigue syndrome. Good general care may offer as much benefit as cognitive behaviour therapy

Comment on: Cognitive behaviour therapy for the chronic fatigue syndrome: a randomized controlled trial. [BMJ. 1996]

 

EDITOR,-Successful outcomes have been reported from controlled clinical trials of an eclectic range of treatments-from immunotherapy to magnesium supplementation-for the chronic fatigue syndrome.’ Unpublished data suggest that equal success can be achieved with some forms of alternative therapy (for example, homoeopathy) when patients believe strongly in the approach. Most physicians, however, continue to view all such results with healthy scepticism. An equally cautious view needs to be taken when assessing Michael Sharpe and colleagues’ study of cognitive behaviour therapy.2 In a disorder that is almost certainly heterogeneous in nature, two important questions need to be answered before we can conclude that cognitive behaviour therapy is of value.

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350899/pdf/bmj00539-0052b.pdf

 

Source: Shepherd C. Cognitive behaviour therapy for the chronic fatigue syndrome. Good general care may offer as much benefit as cognitive behaviour therapy. BMJ. 1996 Apr 27;312(7038):1096; author reply 1098. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2350899/

 

Longitudinal study of outcome of chronic fatigue syndrome

Abstract:

OBJECTIVE: To examine the predictors of long term outcome for patients with the chronic fatigue syndrome.

DESIGN: Cohort study.

SUBJECTS: 139 subjects previously enrolled in two treatment trials; 103 (74%) were reassessed a mean of 3.2 years after start of the trials.

SETTING: University hospital referral centre.

MAIN OUTCOME MEASURES: Age at onset, duration of illness, psychological and immunological status at initial assessment. Ongoing symptom severity, levels of disability, and immunological function at follow up.

RESULTS: 65 subjects had improved but only six reported no current symptoms. An alternative medical diagnosis had been made in two and psychiatric illness diagnosed in 20. The assignment of a primary psychiatric diagnosis at follow up and the strength of the belief that a physical disease process explained all symptoms at entry to the trials both predicted poor outcome. Age at onset of illness, duration of illness, neuroticism, premorbid psychiatric diagnoses, and cell mediated immune function did not predict outcome.

CONCLUSION: Though most patients with the chronic fatigue syndrome improve, a substantial proportion remain functionally impaired. Psychological factors such as illness attitudes and coping style seem more important predictors of long term outcome than immunological or demographic variables.

Comment in:

Chronic fatigue syndrome. Distinguish between syndromes… [BMJ. 1994]

Chronic fatigue syndrome. Immunological findings vary between populations. [BMJ. 1994]

Chronic fatigue syndrome. Role of psychological factors overemphasised. [BMJ. 1994]

 

Source: Wilson A, Hickie I, Lloyd A, Hadzi-Pavlovic D, Boughton C, Dwyer J, Wakefield D. Longitudinal study of outcome of chronic fatigue syndrome. BMJ. 1994 Mar 19;308(6931):756-9. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2539669/

You can read the full article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2539669/pdf/bmj00432-0032.pdf

 

Chronic fatigue syndrome: prevalence and outcome

This week’s journal contains two papers from multidisciplinary teams that shed light on syndromes of chronic fatigue and so move us towards resolving the often bitter controversy over myalgic encephalomyelitis. A large community survey by Pawlikowska and colleagues provides estimates of the prevalence of the symptom of fatigue,’ operationally defined chronic fatigue syndrome,2 and self declared (possibly self diagnosed) chronic fatigue syndrome in young and middle aged adults in south east England (p 763).1

They found that fatigue was common, occurred as a continuum, and was highly correlated with emotional distress. Most people attributed their fatigue to social or psychological factors. While 02% of the respondents reported that they had chronic fatigue syndrome, as many as 1% of respondents satisfied several of the criteria for the syndrome. As with many illnesses, the cases were found at the severe end of the continuum of fatigue, without any sharp cut off. Associations of self reported chronic fatigue syndrome with female sex and upper social class confirm what has been found in primary care and hospital studies 34 but are less typical in community surveys.’ 6 Previous studies have consistently identified a strong association between emotional morbidity and chronic fatigue syndrome,7 but this “is inevitable given the similarities of the criteria and the measures used to define them.”‘ Interestingly, the closer cases fulfil the definition of chronic fatigue syndrome the stronger the association with emotional morbidity.

Comment in:

Chronic fatigue syndrome. Prevalence study overlooked. [BMJ. 1994]

Chronic fatigue syndrome. …and study them separately. [BMJ. 1994]

Chronic fatigue syndrome. ME Association is honest about prognosis. [BMJ. 1994]

Comment on: Professional and popular views of chronic fatigue syndrome. [BMJ. 1994]

 

Source: Lawrie SM, Pelosi AJ. Chronic fatigue syndrome: prevalence and outcome. BMJ. 1994 Mar 19;308(6931):732-3. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2539646/

You can read the full article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2539646/pdf/bmj00432-0006.pdf

 

Chronic fatigue syndrome

Comment on: Chronic fatigue syndrome. [J Neurol Neurosurg Psychiatry. 1991]

 

As neurologists in a country where the chronic fatigue syndrome (CFS) has almost no recognized official existence, we often feel bewildered by the papers on the subject we read in the Anglo-Saxon literature. We wonder whether the clinical experience of some of their authors is so different from ours that they do not consider that their approach may result in a disservice to their patients. The JNNP has followed a sensitive line culminating in Wessely’s excellent editorial. We still, however, feel that his kid-glove handling of the subject reflects the controversy that surrounds it in the UK.

Avoiding the futile organic versus functional debate, in our neurology department we refer to many of the problems we see in our practice as the “chronic vigilance syndromes”: specific patterns of enhanced attention centred on particular bodily structures and functions. Naturally, the commonest in a neurologist’s outpatient clinic are the “cephalic vigilance syndromes” in their two main forms: the painful, with its several varieties of chronic headaches, and the operational one with its subjective unsteadiness, concentration problems and various odd turns. “Thoracic vigilance” patients are often referred to cardiologists or pneumologists but a fair number also come to us, especially if they have hyperventilation symptoms such as dizziness and paraesthesiae. Among the different types of patients with fatigue we are also familiar with the occasional “neuro-muscular vigilance” patient whose symptoms parallel your CFS cases. We have the noncontrolled impression that in our environment such patients often have a premorbid preoccupation with their locomotor system.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC488951/pdf/jnnpsyc00486-0096a.pdf

 

Source: Digon A, Goicoechea A, Moraza MJ. Chronic fatigue syndrome. J Neurol Neurosurg Psychiatry. 1992 Jan;55(1):85. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC488951/