Tag: stigma

Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses

Abstract:
Chronic fatigue syndrome and multiple chemical sensitivity are two clusters of illnesses that are pervaded by medical, social and political uncertainty. This article examines how facts are talked about and experienced in struggles over these emergent, contested illnesses in the US. Based principally on a large archive of internet newsgroup postings, and also on fieldwork and on published debates, it finds that (1) sufferers describe their experiences of being denied healthcare and legitimacy through bureaucratic categories of exclusion as dependent upon their lack of biological facts; (2) institutions manage these exclusions rhetorically through exploiting the open-endedness of science to deny efficacy to new facts; (3) collective patient action responds by archiving the systematic nature of these exclusions and developing counter-tactics. The result is the maintenance of these very expensive struggles for all involved.

 

Source: Dumit J. Illnesses you have to fight to get: facts as forces in uncertain, emergent illnesses. Soc Sci Med. 2006 Feb;62(3):577-90. Epub 2005 Aug 8. http://www.ncbi.nlm.nih.gov/pubmed/16085344

 

Perceived stigma in functional somatic syndromes and comparable medical conditions

Abstract:

OBJECTIVE: To determine if patients with functional somatic syndromes (FSS) perceive greater levels of stigma than patients with comparable medical conditions that have a clear medical pathology.

METHODS: Patients with chronic fatigue syndrome (CFS), fibromyalgia (FM), or irritable bowel syndrome (IBS) were compared to multiple sclerosis (MS), rheumatoid arthritis (RA), and inflammatory bowel disease (IBS), respectively.

RESULTS: There were greater levels of perceived stigma in the combined group of FSS compared to the medical control group. When each FSS was compared to its matched control group, only CFS had a higher level of perceived stigma. These results remained when controlling for other variables relevant to stigma.

CONCLUSIONS: The higher level of perceived stigma in CFS may be due to the ambiguity of its status as a medical condition. The absence of this effect in FM and IBS is consistent with a greater level of acceptance of these disorders as medical illnesses.

 

Source: Looper K, Kirmayer LJ. Perceived stigma in functional somatic syndromes and comparable medical conditions. J Psychosom Res. 2004 Oct;57(4):373-8. http://www.ncbi.nlm.nih.gov/pubmed/15518673

 

Women experienced chronic fatigue syndrome and fibromyalgia as stigmatising

Comment on: Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. [Qual Health Res. 2002]

 

Any clinician who has taken the trouble to get to know a patient with fibromyalgia or CFS will recognise the basic finding of the study by Åsbring and Närvänen — patients attending specialist clinics with either condition (the similarities between the 2 outweigh the differences) feel acutely a sense of discrimination and stigmatisation. Many describe negative interactions with the medical profession.1 This is most acute when doctors are perceived to be “psychologising” the condition. Indeed, patients in this study found the act of prescribing antidepressants to be “violating”. This is regrettable because evidence exists that antidepressants can reduce pain, fatigue, and sleep disturbances in patients with fibromyalgia,2 although similar evidence does not exist for patients with CFS.

You can read the rest of this comment here: http://ebmh.bmj.com/content/5/4/127.long

 

Source: Wessely S. Women experienced chronic fatigue syndrome and fibromyalgia as stigmatising. Evid Based Ment Health. 2002 Nov;5(4):127. http://ebmh.bmj.com/content/5/4/127.long (Full comment)

 

Chronic fatigue syndrome/myalgic encephalitis

Comment in: Chronic fatigue syndrome/ME. [Br J Gen Pract. 2002]

Comment on: Doctors and social epidemics: the problem of persistent unexplained physical symptoms, including chronic fatigue. [Br J Gen Pract. 2002]

 

In their editorial (Journal, May 2002), Stanley et al argued that chronic fatigue should be categorised under ‘persistent unexplained physical symptoms’, and that these are often the result of the somatisation of ‘unhappiness’ and the misinterpretation of ‘normal functioning’. However, their analysis contained some notable flaws.

Firstly, there is more to chronic fatigue syndrome (CFS) than ‘tiredness and its synonyms’ and to ignore symptoms, such as vertigo, nausea, and photophobia, both misrepresents and trivialises this illness.

Secondly, the authors alluded to widespread somatisation, despite the lack of evidence that this is a major problem in relation to CFS. The suggestion that this is a homogeneous population of unhappy, prejudiced, attention-seekers is difficult to reconcile with evidence-based medicine, and the subtle accusations of mass exaggeration are stigmatising and unhelpful.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314419/pdf/12236282.pdf

 

Source: Goudsmit E. Chronic fatigue syndrome/myalgic encephalitis. Br J Gen Pract. 2002 Sep;52(482):763; author reply 763-4. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1314419/pdf/12236282.pdf (Full article)

 

Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia

Abstract:

Chronic fatigue syndrome and fibromyalgia are characterized by being difficult to diagnose and having an elusive etiology and no clear-cut treatment strategy. The question of whether these illnesses are stigmatizing was investigated through interviews with 25 women with these illnesses. The women experienced stigmatization primarily before receiving a diagnosis, and the diffuse symptomatology associated with the illnesses were significant for stigmatization. Stigma consisted of questioning the veracity, morality, and accuracy of patient symptom descriptions and of psychologizing symptoms. Coping with stigma was also explored and found to comprise both withdrawal and approach strategies, depending on the individual’s circumstances and goals.

Comment in: Women experienced chronic fatigue syndrome and fibromyalgia as stigmatising. [Evid Based Ment Health. 2002]

 

Source: Asbring P, Närvänen AL. Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qual Health Res. 2002 Feb;12(2):148-60. http://www.ncbi.nlm.nih.gov/pubmed/11837367

 

The development of the Chronic Fatigue Syndrome Attitudes Test. A psychometric analysis

Abstract:

Chronic Fatigue Syndrome (CFS) is characterized by debilitating symptoms including persistent or relapsing fatigue. As a result of CFS, some individuals experience significant stigma that is attached to this illness. Many medical professionals are skeptical of the validity of the illness, and employers often fail to appreciate the seriousness of the symptoms. Although negative attitudes greatly affect the lives of individuals with CFS, there is presently no measurement of attitudes toward this illness and people who have CFS. The purpose of the present studies was to create a scale that measures attitudes toward individuals with CFS–the Chronic Fatigue Attitudes Test (CAT)–and to assess the scale’s reliability and validity. The 13-item scale was created using several constructs outlined in the literature regarding negative attitudes toward people with CFS, disabilities, and AIDS. Theoretical implications of the findings and the utility of the CAT are discussed.

 

Source: Shlaes JL, Jason LA, Ferrari JR. The development of the Chronic Fatigue Syndrome Attitudes Test. A psychometric analysis. Eval Health Prof. 1999 Dec;22(4):442-65. http://www.ncbi.nlm.nih.gov/pubmed/10623400

 

Professional and popular views of chronic fatigue syndrome

Abstract:

OBJECTIVE: To study the coverage of the chronic fatigue syndrome in the popular and professional press.

DESIGN: Search of all original research papers on the chronic fatigue syndrome published in British journals from 1980 onwards and of professional trade papers, national newspapers, and women’s magazines. Interviews with six medical journalists.

SETTING: British scientific, medical, and popular press.

RESULTS: 37 (49%) articles in research journals did not favour organic causes and 23 (31%) favoured organic causes. By contrast 31 (55%) articles in the medical trade press and 118 (69%) in national newspapers and women’s magazines favoured organic causes.

CONCLUSIONS: Press coverage of chronic fatigue syndrome has amplified and distorted divisions in the research community concerning the chronic fatigue syndrome. Articles in the press concentrate on a simple medical model of illness reinforcing the stigma of psychological illness and dissatisfaction with traditional medical authority.

Comment in:

Chronic fatigue syndrome: prevalence and outcome. [BMJ. 1994]

Patients with a self diagnosis of myalgic encephalomyelitis. [BMJ. 1995]

 

Source: MacLean G, Wessely S. Professional and popular views of chronic fatigue syndrome. BMJ. 1994 Mar 19;308(6931):776-7. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2539637/

You can read the full article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2539637/pdf/bmj00432-0054.pdf