Tag: psychologizing

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal

By George Monbiot

It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness.

Long after this approach was debunked in scientific literature, clinicians who championed it have refused to let go. They continue to influence healthcare systems, governments and health insurers. And patients still suffer as a result.

Read the full article in The Guardian HERE.

Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)–a case study

Abstract:

OBJECTIVE: To explore obstructions for quality care from experiences by patients suffering from chronic fatigue syndrome (CFS).

METHODS: Qualitative case study with data drawn from a group meeting, written answers to a questionnaire and a follow-up meeting. Purposeful sample of 10 women and 2 men of various ages, recruited from a local patient organization, assumed to have a special awareness for quality care.

RESULTS: CFS patients said that lack of acknowledgement could be even worse than the symptoms. They wanted their doctors to ask questions, listen to them and take them seriously, instead of behaving degrading. Many participants felt that the doctors psychologized too much, or trivialized the symptoms. Participants described how doctors’ lack of knowledge about the condition would lead to long-term uncertainty or maltreatment. Even with doctors who were supportive, it would usually take months and sometimes years until a medical conclusion would be reached, or other disorders were ruled out. Increased physical activity had been recommend, but most of the informants experienced that this made them worse.

CONCLUSION: Current medical scepticism and ignorance regarding CFS shapes the context of medical care and the illness experiences of CFS patients, who may feel they neither get a proper assessment nor management.

PRACTICE IMPLICATIONS: CFS patients’ reports about patronizing attitudes and ignorance among doctors call for development of evidence based strategies and empowerment of patients, acknowledging the patients’ understanding of symptoms and the complex nature of the disease. The NICE guidelines emphasize the need of patient participation and shared decision-making.

Comment in: Qualitative methods in communication and patient education research. [Patient Educ Couns. 2008]

 

Source: Gilje AM, Söderlund A, Malterud K. Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)–a case study. Patient Educ Couns. 2008 Oct;73(1):36-41. doi: 10.1016/j.pec.2008.04.001. Epub 2008 May 16. https://www.ncbi.nlm.nih.gov/pubmed/18486415

 

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

 

Chronic fatigue syndrome: what’s in a name?

Comment on: Deeper diagnosis. Multiple determinants of an illness experience. [Can Fam Physician. 1993]

 

I n the article “Deeper Diagnosis,”‘ it is evident that the various physicians involved had gone to great lengths to diagnose the patient’s condition. What is also apparent is the tendency of traditional medicine to “psychologize” any medical presentation that baffles physicians.

Chronic fatigue syndrome was considered during one of the emergency room visits that the patient made. This patient has postviral fatigue syndrome (as researchers in Glasgow, Scotland, call it), chronic fatigue syndrome (as Americans call it), chronic fatigue immune dysfunction syndrome (as patients in North America call it), and benign myalgic encephalomyelitis (as the English and sometimes Canadians call it). Fatigue does not have to be the predominant symptom of postviral fatigue syndrome, and the symptoms can include those of the patient in the article and much more.

You can read the rest of this article, along with the authors’ reply, here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2380224/pdf/canfamphys00100-0022a.pdf

 

Source: Trevor A. Chronic fatigue syndrome: what’s in a name? Can Fam Physician. 1994 Jun;40:1088-9. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2380224/