Tag: psychosocial model

The impact of leading questions on ME/CFS research: bias and stigma in study design

Abstract:

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex and often misunderstood illness, characterized by post-exertional malaise, unrefreshing sleep, and cognitive impairments.

Objective: To investigate how question phrasing in ME/CFS research may influence participant attributions of fatigue/energy problems and unintentionally reinforce psychosomatic assumptions.

Methods: A total of 2248 individuals with ME/CFS from an international sample completed a survey assessing fatigue-related attributions. We analyzed how question wording influenced whether participants attributed their symptoms to physical or psychosocial causes. Particular focus was given to a fatigue attribution item that framed causes in terms of ‘personal life’ or ‘environmental factors.’

Results: Participants were significantly more likely to attribute their fatigue/energy problems to psychosocial factors when prompted with psychosocial framing. Many respondents who previously indicated physical causes as the primary source of their symptoms shifted to psychosocial explanations in response to the differently phrased item. This shift was especially pronounced among participants reporting higher levels of psychological distress.

Conclusions: Leading or biased question phrasing may distort participant responses in ME/CFS research, potentially inflating psychosomatic interpretations of the illness. Researchers should critically examine survey language to avoid introducing unintended bias that could compromise research validity and reinforce stigma.

Source: Campolattara, A. T. T., Jason, L. A., & Tuzzolino, K. C. (2025). The impact of leading questions on ME/CFS research: bias and stigma in study design. Fatigue: Biomedicine, Health & Behavior, 1–16. https://doi.org/10.1080/21641846.2025.2530338 https://www.tandfonline.com/doi/full/10.1080/21641846.2025.2530338

Chronic fatigue syndrome/myalgic encephalomyelitis as a twentieth-century disease: analytic challenges

Abstract:

The challenges of chronic fatigue syndrome (often called myalgic encephalomyelitis, especially in the UK) (CFS/ME) to analytical and medical approaches are connected with our inability to understand its distressing somatic symptoms in terms of a single identifiable and understandable disease entity. The evidence for the roles of viral aetiologies remains inconclusive, as does our understanding of the involvement of the immune system.

The history and social context of CFS/ME, and its relation to neurasthenia and psychasthenia are sketched. A symbolic attitude to the condition may need to be rooted in an awareness of psychoid levels of operation, and the expression and spread of CFS/ME may sometimes be aided by the ravages of projective identification. Psychic denial, sometimes violent, in sufferers (especially children and adolescents) and their families may be important in the aetiology of CFS/ME. We draw out common threads from psychodynamic work with five cases, four showing some symptomatic improvement, analytic discussions of three cases being presented elsewhere in this issue of JAP.

 

Source: Simpson M, Bennett A, Holland P. Chronic fatigue syndrome/myalgic encephalomyelitis as a twentieth-century disease: analytic challenges. J Anal Psychol. 1997 Apr;42(2):191-9. http://www.ncbi.nlm.nih.gov/pubmed/9161120

 

Psychosocial correlates of chronic fatigue syndrome in adolescent girls

Abstract:

Behavior problems and family functioning were investigated in a sample of 10 adolescent girls with chronic fatigue syndrome (CFS), 10 matched healthy adolescent girls, and 10 adolescents with childhood cancer in remission.

Based on the adolescent girls’ reports, the CFS group had significantly higher scores than the cancer and healthy comparison adolescent girls on somatic complaints and also significantly higher scores than the cancer controls on internalizing symptoms and depression. Parent reports resulted in significantly higher scores in the CFS group than the adolescent girls from the healthy comparison groups on internalizing scores and somatic complaints. There were no significant differences on any family variables.

 

Source: Pelcovitz D, Septimus A, Friedman SB, Krilov LR, Mandel F, Kaplan S. Psychosocial correlates of chronic fatigue syndrome in adolescent girls. J Dev Behav Pediatr. 1995 Oct;16(5):333-8. http://www.ncbi.nlm.nih.gov/pubmed/8557833

 

Case control study of chronic fatigue in pediatric patients

Abstract:

OBJECTIVE: To determine the demographic characteristics, medical features, psychological profile, and natural history of children with chronic fatigue.

DESIGN: Case control study.

SETTING: Pediatric Infectious Diseases Clinic of Kosair Children’s Hospital, 1990 to 1992.

PARTICIPANTS: Forty-four patients referred for persistent fatigue were evaluated. Twenty patients participated in a psychological study; 20 healthy controls of similar age and gender were recruited from community pediatric practices and 20 matched depressed controls were recruited from university psychiatry services (subjects were treated as groups in the analyses).

MEASURES: Demographic data were obtained for all referred patients. Those with fatigue for at least 2 months and no alternative diagnosis received a detailed history, physical, and battery of laboratory tests (complete blood count, sedimentation rate, chemistry panel, chest X-ray thyroid stimulating hormone, thyroxine, anti-nuclear antibodies, urinalysis, immunoglobulins, and Epstein-Barr virus (EBV), toxoplasma, and cytomegalovirus serologies). Psychological study participants completed the following: background structured interview; Kaufman Brief Intelligence Test; Children’s Depression Inventory; Child Behavior Checklist; Youth Self Report; Diagnostic Interview for Children and Adolescents-Revised; mail-in follow-up survey.

RESULTS: The median age of fatigue patients was 14.3 years; 60% were female, 96% white, and 87% from the mid/upper socioeconomic status (SES). Fatigue patients were demographically similar to 21 patients referred for infectious mononucleosis (IM) but were older than other clinic patients (P < .0001). White race (P = .0568) and mid/upper SES (P = .0403) were over-represented among fatigue patients compared to patients referred for other diagnoses. Of 36 patients meeting criteria for further study, 5 had an IM-like illness including evidence of recent EBV infection. For the remaining 31 patients, clinical and laboratory evaluations were unrevealing. Psychological study subjects reported marked declines in quality-of-life and scored high on measures of internalizing, withdrawal, and social isolation. Nine met diagnostic criteria for depression, although depressive symptoms were not as prominent as those reported by depressed controls. Fatigue subjects scored higher on somatization than both control groups. The follow-up survey indicated symptomatic improvement in most patients.

CONCLUSIONS: Chronic fatigue was a common reason for referral, with over-representation of white children from mid/upper SES. After exclusion of EBV-associated IM, screening laboratory tests were not helpful in establishing specific organic diagnoses. Whereas the natural history was favorable, chronic fatigue resulted in major quality-of-life changes and was associated with significant levels of psychosocial distress.

IMPLICATIONS: Psychological evaluation is warranted in these patients, as some may have treatable psychological conditions. Given the absence of proved medical therapies, psychosocial interventions to improve quality-of-life should be studied.

 

Source: Carter BD, Edwards JF, Kronenberger WG, Michalczyk L, Marshall GS. Case control study of chronic fatigue in pediatric patients. Pediatrics. 1995 Feb;95(2):179-86. http://www.ncbi.nlm.nih.gov/pubmed/7838632

 

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

 

Culture and somatic experience: the social course of illness in neurasthenia and chronic fatigue syndrome

Abstract:

An anthropological view of culture and somatic experience is presented through elaboration of the notion that illness has a social course. Contemporary anthropology locates culture in local worlds of interpersonal experience. The flow of events and processes in these local worlds influences the waxing and waning of symptoms in a dialectic involving body and society over time.

Conversely, symptoms serve as a medium for the negotiation of interpersonal experience, forming a series of illness-related changes in sufferers’ local worlds. Thus, somatic experience is both created by and creates culture throughout the social course of illness. Findings from empirical research on neurasthenia in China, and chronic fatigue syndrome (CFS) in the United States, corroborate this formulation. Attributions of illness onset to social sources, the symbolic linking of symptoms to life context, and the alleviation of distress with improvement in circumstances point to the sociosomatic mediation of sickness.

Transformations occasioned by illness in the lives of neurasthenic and CFS patients confirm the significance of bodily distress as a vehicle for the negotiation of change in interpersonal worlds. An indication of some of the challenges anthropological thinking poses for psychosomatic medicine concludes the discussion.

 

Source: Ware NC, Kleinman A. Culture and somatic experience: the social course of illness in neurasthenia and chronic fatigue syndrome. Psychosom Med. 1992 Sep-Oct;54(5):546-60. http://www.ncbi.nlm.nih.gov/pubmed/1438658

 

The epidemiology of fatigue: more questions than answers

Fatigue syndromes, though recognised for some time, have recently attracted a variety of new diagnostic labels, as well as both professional and media controversy. However, most of the arguments surround the interpretation of small hospital based case-control studies using highly selected groups of patients.’ There is relative silence on population based studies, which perhaps contributes to the lack of concensus. This paper reviews the epidemiology of fatigue in the general population and in primary care and examines potential sources of bias in hospital based studies

You can read the rest of this article here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1059513/pdf/jepicomh00209-0006.pdf

 

Source: Lewis G, Wessely S. The epidemiology of fatigue: more questions than answers. J Epidemiol Community Health. 1992 Apr;46(2):92-7. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1059513/

 

Psychosocial management of chronic fatigue syndrome in adolescence

Abstract:

The state of chronic fatigue syndrome (CFS) as abnormal illness behaviour or as biologically determined disease is undecided. The ensuing, often public, debate has confused the community and has led to sharp differences in the therapeutic approach to individual patients. These challenges are compounded when the patient is an adolescent and intergenerational issues enter the picture. Two adolescent cases with different outcomes are presented and the principles of a rehabilitation approach to treatment are outlined which attempt to avoid being drawn into unproductive debates about aetiology.

Comment in: Chronic fatigue syndrome. [Aust N Z J Psychiatry. 1992]

 

Source: Rikard-Bell CJ, Waters BG. Psychosocial management of chronic fatigue syndrome in adolescence. Aust N Z J Psychiatry. 1992 Mar;26(1):64-72. http://www.ncbi.nlm.nih.gov/pubmed/1580887

 

Neurasthenia and chronic fatigue syndrome: the role of culture in the making of a diagnosis

Abstract:

Chronic fatigue syndrome is an increasingly popular diagnosis consisting of multiple psychiatric and somatic symptoms. It bears a striking resemblance to the nineteenth-century diagnosis of . Both disorders arose during periods characterized by a preoccupation with commerce and material success and major changes in the role of women. They illustrate the role of culture in the development of a new diagnosis that emphasizes a “medical” rather than “psychiatric” etiology. The authors argue that chronic fatigue syndrome will meet the same fate as neurasthenia–a decline in social value as it is demonstrated that the majority of its sufferers are experiencing primary psychiatric disorders or psychophysiological reactions and that the disorder is often a culturally sanctioned form of illness behavior.

Comment in:

Taking chronic fatigue syndrome seriously. [Am J Psychiatry. 1992]

Taking chronic fatigue syndrome seriously. [Am J Psychiatry. 1992]

Taking chronic fatigue syndrome seriously. [Am J Psychiatry. 1992]

Taking chronic fatigue syndrome seriously. [Am J Psychiatry. 1992]

Taking chronic fatigue syndrome seriously. [Am J Psychiatry. 1992]

Taking chronic fatigue syndrome seriously. [Am J Psychiatry. 1992]

Taking chronic fatigue syndrome seriously. [Am J Psychiatry. 1992]

 

Source: Abbey SE, Garfinkel PE. Neurasthenia and chronic fatigue syndrome: the role of culture in the making of a diagnosis. Am J Psychiatry. 1991 Dec;148(12):1638-46. http://www.ncbi.nlm.nih.gov/pubmed/1957925

 

Intense fatigue in humans. Psychosocial and cultural aspects

Abstract:

A differentiation between the normal sensation of tiredness and the symptom “fatigue” is often difficult. Both are influenced by cultural, social, psychological and biological factors, which can lead–interactively–to symptom formation. Psychiatric disorders frequently associated with fatigue are all forms of depression, somatization and anxiety disorders, chronic pain states and drug abuse among many others. In at least 2/3 of patients with the fashionable chronic fatigue syndrome–formerly called neurasthenia–a psychiatric diagnosis can be made, most of them also suffer from many symptoms attributes to the autonomous nervous system. The clinical approach should be cautious avoiding diagnostic and therapeutic overaction and therapy should emerge from a diagnosis properly assessed.

 

Source: Radvila A. Intense fatigue in humans. Psychosocial and cultural aspects. Ther Umsch. 1991 Nov;48(11):756-61. [Article in German] http://www.ncbi.nlm.nih.gov/pubmed/1754973