Tag: delegitimization

Patient organisations in ME and CFS seek only understanding

Comment on: General practitioners’ perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study. [BMJ. 2004]

 

Editor—To compare general practitioners’ attitudes to patients with chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) and those with irritable bowel syndrome was disappointing in the study by Raine et al.1 Particularly disappointing was that the study was conducted in the months after the chief medical officer recognised—with considerable attendant publicity—the severity and impact of chronic fatigue syndrome or myalgic encephalomyelitis on the lives of those affected.2

One outcome of the study was that pressure groups were perceived as influencing clinical encounters, making it harder to legitimise the symptoms. That the authors labelled patients’ organisations “pressure groups” was interesting in itself.

The organisations cover a range of views on the illness and the solutions needed. This organisation carries out an information role for patients and professionals and provides a range of services no different from that of any other medium sized charity (www.afme.org.uk). We campaign vigorously of course for recognition of chronic fatigue syndrome and myalgic encephalomyelitis and for funding to remedy years of neglect in this field.

We are not “antidoctor” and our members mostly view their general practitioners as supportive and understanding but faced with a complex illness and lacking a toolkit to help.

Far from patients’ organisations wishing to politicise the consulting room, we simply ask for a little more understanding, mixed with a little humility and matched with an eagerness to obtain training and information about diagnosis and treatment.

You can read the rest of this comment here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC449878/

 

Source: Clark C. Patient organisations in ME and CFS seek only understanding. BMJ. 2004 Jul 10;329(7457):112-3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC449878/ (Full article)

 

Patient activism and the struggle for diagnosis: Gulf War illnesses and other medically unexplained physical symptoms in the US

Abstract:

We examine Gulf War illnesses–which include the fatigue, joint pain, dermatitis, headaches, memory loss, blurred vision, diarrhea, and other symptoms reported by Gulf War veterans–in relation to other medically unexplained physical symptoms such as multiple chemical sensitivity,chronic fatigue syndrome, and fibromyalgia. Our intent is to examine the diagnosis negotiations involved in these mysterious diseases, by showing the different forms of legitimacy involved in such interactions.

Factors involved in diagnostic legitimacy are: diagnostic legitimacy in the medical community, lay acceptance of the diagnosis, uncertainty in looking for causes, and social mobilization. We conclude by noting that research may not be able to find any cause for these diseases/conditions; hence, it may be necessary to embrace medical uncertainty, and also to accept patient experience in order to facilitate diagnosis, treatment, and recovery process.

Such a change can alter patients’ expectations and taken-for-granted assumptions about medicine, and perhaps in turn reduce the frequency with which dissatisfied individuals form illness groups that mobilize to challenge what they see as an unresponsive medical system.

 

Source: Zavestoski S, Brown P, McCormick S, Mayer B, D’Ottavi M, Lucove JC. Patient activism and the struggle for diagnosis: Gulf War illnesses and other medically unexplained physical symptoms in the US. Soc Sci Med. 2004 Jan;58(1):161-75. http://www.ncbi.nlm.nih.gov/pubmed/14572929

 

Illness experience, depression, and anxiety in chronic fatigue syndrome

Abstract:

OBJECTIVE: Given the high rate of psychiatric comorbidity with chronic fatigue syndrome (CFS), we considered two possible correlates of anxiety and depression: lack of illness legitimization and beliefs about limiting physical activity.

METHOD: A total of 105 people diagnosed with CFS reported on their experiences with medical professionals and their beliefs about recovery and completed the depression and anxiety subscales of the Brief Symptom Inventory.

RESULTS: Those who said that their physician did not legitimize their illness (36%) had higher depression and anxiety scores (P’s<.05) than their counterparts. Those who believed that limiting their physical exertion was the path to recovery (55%) had lower depression and anxiety scores (P’s<.01) than their counterparts.

CONCLUSION: Lack of illness legitimization ranked high as a source of dissatisfaction for CFS patients, and it may aggravate psychiatric morbidity. Many CFS patients believed that staying within what they felt to be their physical limits would improve their condition. This belief, and possibly an accompanying sense of control over their symptoms, may alleviate psychiatric morbidity.

 

Source: Lehman AM, Lehman DR, Hemphill KJ, Mandel DR, Cooper LM. Illness experience, depression, and anxiety in chronic fatigue syndrome. J Psychosom Res. 2002 Jun;52(6):461-5. http://www.ncbi.nlm.nih.gov/pubmed/12069870

 

Feminist perspectives on the social construction of chronic fatigue syndrome

Abstract:

We contrast Western medical views of chronic fatigue syndrome (CFS) etiology, diagnosis, and treatment with views maintained by a predominantly female CFS population. We argue that the failure of Western medicine to demonstrate a viral etiology for CFS led to a paradigmatic shift in research perspectives, which then embraced psychiatric and sociocultural explanations for CFS. As a result, CFS was delegitimized as a biomedical phenomenon within medical, academic, governmental, and public arenas.

We compare alternative social constructions of CFS with issues pertaining to multiple sclerosis (MS), an illness that similarly predominates among women. Patient perspectives suggest that the history of medical attitudes toward CFS may eventually parallel the transformations that occurred in relation to MS. In particular, the discovery of biological markers for CFS may lay to rest the categorization of CFS as largely within the psychiatric realm.

 

Source: Richman JA, Jason LA, Taylor RR, Jahn SC. Feminist perspectives on the social construction of chronic fatigue syndrome. Health Care Women Int. 2000 Apr-May;21(3):173-85. http://www.ncbi.nlm.nih.gov/pubmed/11111464

 

Society, mind and body in chronic fatigue syndrome: an anthropological view

Abstract:

An anthropological view of chronic fatigue syndrome places the study of illness in social context. Data from an interview study of 50 chronically fatigued patients demonstrate the relation of local social worlds–families, workplaces, communities–to the meaning and experience of illness.

Negative life events and difficulties, multiple commitments, and a hectic pace are among prominent themes in the subjects’ local worlds. These themes are reflected in: (1) attributions of illness onset to social sources, (2) the symbolism of the core complaint of fatigue, and (3) an illness-induced, positively valued lifestyle transformation suggesting the rejection of culturally prescribed ‘busyness’.

Dichotomous definitions of the relation of mind and body are shown to be part of culture, not Nature, in the paper’s second section. The ‘mind-body dichotomy’ and the differing values attached to physical and psychological disorders by a naturalistic scientific paradigm explain the delegitimizing experiences of sufferers, who find their illness dismissed as psychosomatic and therefore ‘not real’.

A conceptualization of chronic fatigue syndrome which links local social worlds to psychological distress, felt bodily sensation and biological changes is proposed. Collaborative teams of social scientists and medical researchers might fruitfully pursue aspects of social context in relation to psychiatric, immunological and viral dimensions of the illness.

 

Source: Ware NC. Society, mind and body in chronic fatigue syndrome: an anthropological view. Ciba Found Symp. 1993;173:62-73; discussion 73-82. http://www.ncbi.nlm.nih.gov/pubmed/8491108