Tag: self help organizations

General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis

Comment in:

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Evidence supports presence of encephalitis. [BMJ. 1995]

GPs’ attitudes to a self diagnosis of myalgic encephalomyelitis. Sufferers continue to be misrepresented. [BMJ. 1995]

 

Interest in the symptom of tiredness has increased with the suggestion of a syndrome of prolonged fatigue caused by infection. The syndrome is referred to as myalgic encephalomyelitis, even though no evidence exists that sufferers have encephalitis or myelitis. Active support organisations encourage self diagnosis 1 and advise how to approach a general practitioner who “doesn’t believe in ME.”2 Problems in doctor-patient relationships may be a factor in persistent disability in fatigue states.3 We therefore used a case vignette method to examine how self diagnosis of myalgic encephalomyelitis could influence general practitioners.4

You can read the full article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2548881/pdf/bmj00581-0036.pdf

 

Source: Scott S, Deary I, Pelosi AJ. General practitioners’ attitudes to patients with a self diagnosis of myalgic encephalomyelitis. BMJ. 1995 Feb 25;310(6978):508. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2548881/

 

Chronic fatigue syndrome. Self help groups give valuable support

Editor,-Tony Delamothe’s article on myalgic encephalomyelitis was refreshingly objective,’ but this cannot be said of S M Lawrie and A J Pelosi’s editorial.2 Delamothe questions whether “medical journals keep doctors in the dark.”‘ We believe that the editorial was not even handed.

Within two weeks of publication of the article and editorial our paper on self help groups was published.3 Lawrie and Pelosi’s editorial stated, “if an illness is attributed entirely to external sources there will be little scope for self help.”2 Our results were quite different. The Moray Firth myalgic encephalomyelitis self help group has existed for the past seven years and has had one coordinator (AG). A representative sample of members was surveyed by questionnaire in 1988, 1989, and 1992; response rates were 44/53 (83%), 19/34 (56%), and 42/49 (86%) respectively. The results (table) contradict the statement in the editorial.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540186/pdf/bmj00440-0054c.pdf

 

Source: Ho-Yen DO, Grant A. Chronic fatigue syndrome. Self help groups give valuable support. BMJ. 1994 May 14;308(6939):1298-9. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2540186/

 

Outcome in the chronic fatigue syndrome

Comment in: Self help organization’s advice on myalgic encephalomyelitis. [BMJ. 1992]

Comment on: Follow up of patients presenting with fatigue to an infectious diseases clinic. [BMJ. 1992]

 

EDITOR,-Michael Sharpe and colleagues’ paper confirms what many clinicians have long suspected -namely, that the prognosis for those with a chronic fatigue syndrome who reach specialist care is poor.’ The paper also suggests that membership of a self help organisation is associated with a poor outcome. Although the authors emphasise that this association is not necessarily causal, I fear that the self help organisations may interpret this as another attack on their credibility, which will further sour relations between the organisations and the profession.

What are the possible explanations for these disturbing findings? Sharpe and colleagues suggest that patients’ beliefs are an important mediator of disability, a view I share.2 An article written by a sufferer illustrates how this might happen: “These living viruses are erratic and unpredictable. The prickly-edged ones pierce their way into the body cells. If disturbed by the patient’s activity they become as aggressive as a disturbed wasps’ nest, and can be felt giving needle-like jabs (or stimulating the nerves to do so).” It is easy to understand how such beliefs, regardless of their scientific accuracy, amplify disability.

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1882994/pdf/bmj00086-0047b.pdf

 

Source: Wessely S. Outcome in the chronic fatigue syndrome. BMJ. 1992 Aug 8;305(6849):365. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1882994/

 

Outcome in the chronic fatigue syndrome

Comment on: Follow up of patients presenting with fatigue to an infectious diseases clinic. [BMJ. 1992]

 

EDITOR,-Michael Sharpe and colleagues report that most patients with the chronic fatigue syndrome rate contact with medical services as unhelpful or only slightly helpful. Many sufferers turn to alternative health care, again with varied success. Such dissatisfaction with medical care is well documented, and self help organisations flourish to provide the support, advice, and education that is not, or cannot be, provided by the medical profession; they potentially fulfil an important role.

The authors conclude that for patients with the chronic fatigue syndrome membership of a self help organisation is associated with a poorer outcome (although whether members were more functionally impaired at the outset is not known). Adopting coping strategies, particularly with regard to exercise and “stress,” and a belief in the persistence of a viral infection are also associated with continuing disability.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883006/pdf/bmj00086-0047d.pdf

 

Source: Cope H, David AS. Outcome in the chronic fatigue syndrome. BMJ. 1992 Aug 8;305(6849):365. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883006/

 

Follow up of patients presenting with fatigue to an infectious diseases clinic

Abstract:

OBJECTIVES: To determine the symptomatic and functional status during follow up of patients referred to hospital with unexplained fatigue and to identify patient variables associated with persistent functional impairment.

DESIGN: Follow up by postal questionnaire six weeks to four years (median 1 year) after initial clinical assessment of patients referred to hospital during 1984-8.

SETTING: Infectious diseases outpatient clinic in a teaching hospital.

PATIENTS: 200 consecutive patients with fatigue of uncertain cause for at least six weeks; 177 fulfilled the inclusion criteria.

MAIN OUTCOME MEASURES: Findings at initial assessment; current symptoms, beliefs about the cause of illness, coping behaviours emotional disorder, social variables including membership of self help organizations, and degrees of recovery and functional impairment from questionnaire responses.

RESULTS: 144 (81%) patients returned completed questionnaires. Initial assessment did not indicate the cause of fatigue, other than preceding infection. The proportion of patients with functional impairment was significantly smaller with longer follow up (33% (11/33) at two to four years, 73% (29/40) at six weeks to six months; chi 2 for trend = 12.5, df = 1; p less than 0.05). Functional impairment was significantly associated with belief in a viral cause of the illness (odds ratio = 3.9; 95% confidence interval 1.5 to 9.9), limiting exercise (3.2; 1.5 to 6.6), avoiding alcohol (4.5; 1.8 to 11.3), changing or leaving employment (3.1; 1.4 to 6.9), belonging to a self help organization (7.8; 2.5 to 23.9), and current emotional disorder (4.4; 2.0 to 9.3).

CONCLUSIONS: Short term prognosis for recovery of function was poor but improved with time. Most patients had made a functional recovery by two years after initial clinic attendance. Impaired functioning was more likely with certain patient characteristics. Prospective studies are required to clarify whether these associations are the consequences of a more disabling illness or indicate factors contributing to impaired function.

Comment in

Outcome in the chronic fatigue syndrome. [BMJ. 1992]

Outcome in the chronic fatigue syndrome. [BMJ. 1992]

Outcome in the chronic fatigue syndrome. [BMJ. 1992]

 

Source: Sharpe M, Hawton K, Seagroatt V, Pasvol G. Follow up of patients presenting with fatigue to an infectious diseases clinic. BMJ. 1992 Jul 18;305(6846):147-52. http://www.ncbi.nlm.nih.gov/pubmed/1515828

Note: You can read the full article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883193/