Compelled loneliness and necessitated social isolation: “It’s like being on the other side of a mirror, just looking in”

Abstract:

This article develops the conceptualisation of loneliness by drawing on 42 accounts of myalgic encephalomyelitis (ME). While illness experience is a central concern of the sociology of health and illness, experiences of loneliness alongside contested and chronic illness have received less attention. The analysis illustrates how loneliness can be an integral part of living with ME and offers two novel conceptual contributions – necessitated social isolation and compelled loneliness.

Necessitated social isolation concerns how ME symptoms can make social lives increasingly restricted. Compelled loneliness highlights how the combined experiences of both stigma and contested illness can lead to social withdrawal and rejection, which create a sense of loneliness. The article argues that loneliness and social isolation can be conceptually distinct yet recursive and overlapping.

With the worsening of ME, the participants experienced a cycle of loneliness, in which social isolation and loneliness reproduced each other. Three key themes draw attention to how loneliness is affected by the situational aspects of living with a chronic and contested illness: (1.) spatial and temporal restrictedness (2.) communicative alienation and (3.) discreditation. The article highlights how health challenges can impact on loneliness and how the stigma of contested illness exacerbates loneliness.

Source: Wotherspoon, N. (2023). Compelled loneliness and necessitated social isolation: “It’s like being on the other side of a mirror, just looking in”Sociology of Health & Illness118https://doi.org/10.1111/1467-9566.13732 https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13732 (Full text)

Chronic fatigue syndrome in children. All studies must be subjected to rigorous scrutiny

Editor—Over the years, the ME Association has noted that some of those writing in the BMJ make assumptions about the views of organisations concerned with myalgic encephalomyelitis. These assumptions concern the organisations’ views about the aetiology and treatment of the disease. We wish to put the record straight as regards the position of the ME Association. We do not regard the mind-body issue as clear cut. We accept that, as in any long term disabling illness, symptoms will include both physical and psychological components, and we make this clear in our literature. We find unacceptable the often voiced assumption that our views on aetiology and treatment are coloured by prejudice against psychological illness or a wish to stigmatise such illnesses as less valid than physical illness. All illness, whatever the cause, is legitimate, and patients with that illness are worthy of respect and acceptance.

You can read the rest of this article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127598/pdf/9361555.pdf

 

Source: Hume M. Chronic fatigue syndrome in children. All studies must be subjected to rigorous scrutiny. BMJ. 1997 Oct 11;315(7113):949. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127598/

 

Chronic fatigue syndrome in children. Patient organisations are denied a voice

Comment on: Managing chronic fatigue syndrome in children. [BMJ. 1997]

 

Editor—Action for ME is one of the two patient support groups referred to in “editor’s choice” in the issue of 7 June. The organisation, which represents 8000 members, accepts that any illness can have both physical and psychological components. In fact, for the past five years it has offered psychological support in the form of professional telephone counselling, and our journal has carried numerous articles testifying to a more complex understanding than the editor implies.

What we have a problem with, however, is some medical journals’ overemphasis on psychological factors when they refer to myalgic encephalomyelitis. Provocative features about hysteria and wandering wombs have not helped.1 Because of the possibility of cognitive malfunction,2 we believe that getting better is more complex that letting go of “symptom dependency” and “therapeutic nihilism”—terms that are frequently used in research attempting to show that abnormalities are not components of a primary pathological process but are secondary to behavioural aspects of myalgic encephalomyelitis, such as reduced physical activity.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127601/pdf/9361554.pdf

 

Source: Jacobs G. Chronic fatigue syndrome in children. Patient organisations are denied a voice. BMJ. 1997 Oct 11;315(7113):949. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2127601/

 

Prognosis in chronic fatigue syndrome: a prospective study on the natural course

Abstract:

OBJECTIVE: To determine spontaneous improvement after a follow up interval of 18 months in patients with chronic fatigue syndrome and to identify factors that predict improvement.

METHODS: A longitudinal study was used. Of 298 initially assessed self referred patients fulfilling criteria for chronic fatigue syndrome, 246 patients completed self report questionnaires at follow up (response rate 83%). A multidimensional assessment method was used, measuring behavioural, emotional, cognitive, and social functioning. Comparison data from 53 healthy subjects matched for age, sex, and educational level were available.

RESULTS: Three per cent of patients reported complete recovery and 17% reported improvement. At follow up, there were considerable problems at work and consumption of medication was high. Subjective improvement was confirmed by dimensional change: at follow up recovered patients had similar scores to healthy subjects and improved patients showed significant improvement on four out of seven outcome measures and had higher scores than healthy subjects in all dimensions. Sociodemographic variables or treatment by specialists and alternative practitioners did not predict improvement. Predictors of improvement were: subjective sense of control over symptoms, less fatigue, shorter duration of complaints, and a relative absence of physical attributions.

CONCLUSION: The improvement rate in patients with a relatively long duration of complaints is small. Psychological factors are related to improvement, especially cognitive factors.

 

Source: Vercoulen JH, Swanink CM, Fennis JF, Galama JM, van der Meer JW, Bleijenberg G. Prognosis in chronic fatigue syndrome: a prospective study on the natural course. J Neurol Neurosurg Psychiatry. 1996 May;60(5):489-94. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC486359/ (Full article)

Chronic fatigue syndrome: current perspectives on evaluation and management

Abstract:

OBJECTIVE: To describe clinical and laboratory guidelines for assessment and management of patients presenting with chronic fatigue syndrome(CFS).

DATA SOURCES: Relevant international consensus diagnostic criteria and research literature on the epidemiology, pathophysiology, concurrent medical and psychological disturbance and clinical management of CFS.

CONCLUSIONS: Medical and psychiatric morbidity should be carefully assessed and actively treated, while unnecessary laboratory investigations and extravagant treatment regimens should be avoided. No single infective agent has been demonstrated as the cause of CFS, and immunopathological hypotheses remain speculative. The aetiological role of psychological factors is debated, but they do predict prolonged illness. The rate of spontaneous recovery appears to be high. Effective clinical management requires a multidisciplinary approach, with consideration of the medical, psychological and social factors influencing recovery.

Comment in: Chronic fatigue syndrome: is total body potassium important? [Med J Aust. 1996]

 

Source: Hickie IB, Lloyd AR, Wakefield D. Chronic fatigue syndrome: current perspectives on evaluation and management. Med J Aust. 1995 Sep 18;163(6):314-8. http://www.ncbi.nlm.nih.gov/pubmed/7565238