Self help organization’s advice on myalgic encephalomyelitis

Comment on: Outcome in the chronic fatigue syndrome. [BMJ. 1992]

 

EDITOR,-I should like to assure Simon Wessely that neither the ME Association nor ME Action regards Michael Sharpe and colleagues’ findings in patients with chronic fatigue’ as another attack on its credibility. Nor do we see why the paper should “further sour relations between the organisations and the profession.”

As Wessely points out, the apparent relation between functional impairment and membership of a self help organisation at follow up does not mean that membership of such an organisation is responsible for the impairment. Aside from the fact that the study did not focus on myalgic encephalomyelitis, or on the work the ME Association does, Sharpe reassured us that there was no evidence of a causal relation between membership of a patient group and level of disability.

As regards the potential damage resulting from inaccurate information about myalgic encephalomyelitis, it is worth emphasising that the quote that illustrates this came from Nursing Standard and not from a magazine for patients. The British organisations have long been unhappy with the way the media have portrayed the illness and reviewed existing research, and it is often extremely difficult to get erroneous or biased information corrected. Sometimes we get a right of reply, but usually we don’t.

Finally, I wish to make clear that our current advice on exercise and stress is based on sound scientific research, the recommendations of our medical advisers, and 50 years’ experience. Since our aim is to help patients it would be ridiculous for us to ignore good research and to stick instead to outdated explanations, speculation, or even prejudice. No one gains from such a narrow minded approach, least of all us.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883373/pdf/bmj00091-0063a.pdf

 

Source: Hume MC. Self help organization’s advice on myalgic encephalomyelitis. BMJ. 1992 Sep 12;305(6854):649. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883373/

 

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 herehttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883193/

 

Fluctuations in perceived energy and mood among patients with chronic fatigue syndrome

Abstract:

Patients currently suffering or recently recovered from chronic fatigue syndrome (CFS) were compared with each other and with a group of well-matched controls in a study of diurnal variation in levels of perceived mental and physical energy and positive and negative affect.

Patients who were currently ill showed diurnal variation in patterns of energy, with maximum levels being recorded between 10.00 h and 12.00 h which were significantly higher (P < 0.05) than energy levels recorded on rising or retiring. This pattern was similar to the controls but average energy levels at each time point were lower (P < 0.05) among the ill patients.

Recovered patients showed the same pattern, with mean energy levels falling between those of the ill patients and controls. Similar diurnal patterns were found for perceptions of positive, though not negative affect. Correlations between physical and mental energy and between both of these energy variables and positive affect were high (r = 0.75 to 0.85) in both controls and CFS patients. However, correlations with negative affect were low (eg r = -0.10) and non-significant.

Total scores on the Hospital Anxiety and Depression Scale (HAD) were significantly higher (P < 0.05) among patients who were still ill than those who had recovered. Scores on the HAD Depression (but not Anxiety) subscale were also significantly higher among those who were still ill (P < 0.01). These findings may be of value in facilitating programmes of cognitive-behavioural modification intended to aid the recovery of patients with CFS.

Comment in:

Fluctuations in perceived energy and mood among patients with chronic fatigue syndrome. [J R Soc Med. 1992]

Does atmospheric nitrous oxide (N2O) affect the perception of energy and mood? [J R Soc Med. 1992]

 

Source: Wood C, Magnello ME, Sharpe MC. Fluctuations in perceived energy and mood among patients with chronic fatigue syndrome. J R Soc Med. 1992 Apr;85(4):195-8. http://www.ncbi.nlm.nih.gov/pubmed/1290537

Note: You can read the full article herehttp://www.ncbi.nlm.nih.gov/pmc/articles/PMC1294721/

 

Psychiatric management of PVFS

Abstract:

Psychiatric management of PVFS (considered as a subtype of CFS) is a pragmatic approach to a disorder for which strictly biomedical treatments have so far had little to offer. Psychiatric assessment embraces a comprehensive (biopsychosocial) approach, and distinguishes factors that perpetuate the condition from those that may have precipitated it. Treatments are targeted at perpetuating factors.

Few controlled treatment trials have been reported in patients selected specifically as meeting criteria for CFS. There is evidence available, however, that suggests useful management strategies. An uncontrolled study of treatment of CFS with combined antidepressant drug and psychological treatment has produced promising results. In addition there is useful evidence arising from the study and treatment of the individual symptoms of CFS, occurring both in isolation as part of other syndromes.

The results of controlled trials of antidepressant drugs, and of psychological and rehabilitative treatment are awaited. It is already possible to offer provisional guidelines for treatment.

 

Source: Sharpe M. Psychiatric management of PVFS. Br Med Bull. 1991 Oct;47(4):989-1005. http://www.ncbi.nlm.nih.gov/pubmed/1794095

 

A report–chronic fatigue syndrome: guidelines for research

Introduction:

Patients who present with a principal complaint of disabling fatigue of uncertain cause have received much attention in recent years. Correspondingly there has been an increasing amount of research into this problem. The findings have however often been contradictory. Resolution of these contradictions depends on the ability to compare research studies, but such constructive comparison has rarely been possible. This is largely because research has been carried out by investigators trained in different disciplines, using different criteria to define the condition. Whilst such an eclectic approach is to be welcomed, agreement on case definition, and assessment methods is necessary if progress is to be made.

You can read the rest of this article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/pdf/jrsocmed00127-0072.pdf

 

Source: Sharpe MC, Archard LC, Banatvala JE, Borysiewicz LK, Clare AW, David A, Edwards RH, Hawton KE, Lambert HP, Lane RJ, et al. A report–chronic fatigue syndrome: guidelines for research. J R Soc Med. 1991 Feb;84(2):118-21. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293107/

 

Mania and recovery from chronic fatigue syndrome

A syndrome of disabling fatigue variously labelled myalgic encephalomyelitis (ME), post-viral fatigue, or chronic fatigue syndrome (CFS)1 has received much recent attention(2,3). Depression occurs in up to half of hospital referrals with CFS4-f and in these cases, may explain the symptoms  (7). However, despite suggestions of muscular dysfunction(8) the cause in the remainder is unknown. The following case is reported with reference to this question.

You can read the rest of this article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293060/pdf/jrsocmed00128-0067.pdf

 

Source: M C Sharpe, B A Johnson, and J McCann. Mania and recovery from chronic fatigue syndrome. J R Soc Med. 1991 Jan; 84(1): 51–52. PMCID: PMC1293060 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293060/