A patient’s journey with myalgic encephalomyelitis

Myalgic encephalomyelitis (ME) presents patients and their general practitioners with the challenge of managing a life shaped by chronic debilitating illness, pain, and uncertainty. The notion that body limitations resulting from illness must be recognised is shown in the literature on chronic illness, but at the same time it is necessary to understand the social context of change and diversity within which illness is conceptualised. People give meaning to their illness and altered life course with reference to socioeconomic relations, cultural perceptions and beliefs, and their interactions with health and social care services.

Myalgic encephalomyelitis represents the conundrum of uncertainty in the diagnosis, treatment, and prognosis of the disease. Many of the symptoms that people present with could be indications for other diseases, making it difficult to diagnose. Moreover, there is still some debate about the existence of the disease as a clinical category. Current guidance focuses on the symptoms of fatigue and malaise, cognitive impairment, and pain. The patient’s account in this paper was collected as part of a research study on osteoarthritis of the knee. The patient, Daphne Evans, was interviewed by BNO, but the discussion centred on myalgic encephalomyelitis because she considered this condition of primary importance. Her doctor’s account was added to her own account when the paper was drafted.

 

Source: Ong BN, Evans D, Bartlam A. A patient’s journey with myalgic encephalomyelitis. BMJ. 2005 Mar 19;330(7492):648-50. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC554915/ (Full article)

 

Increased daily physical activity and fatigue symptoms in chronic fatigue syndrome

Abstract:

Individuals with chronic fatigue syndrome (CFS) have been shown to have reduced activity levels associated with heightened feelings of fatigue. Previous research has demonstrated that exercise training has beneficial effects on fatigue-related symptoms in individuals with CFS.

PURPOSE: The aim of this study was to sustain an increase in daily physical activity in CFS patients for 4 weeks and assess the effects on fatigue, muscle pain and overall mood.

METHODS: Six CFS and seven sedentary controls were studied. Daily activity was assessed by a CSA accelerometer. Following a two week baseline period, CFS subjects were asked to increase their daily physical activity by 30% over baseline by walking a prescribed amount each day for a period of four weeks. Fatigue, muscle pain and overall mood were reported daily using a 0 to 100 visual analog scale and weekly using the Profile of Mood States (Bipolar) questionnaire.

RESULTS: CFS patients had significantly lower daily activity counts than controls (162.5 +/- 51.7 x 103 counts/day vs. 267.2 +/- 79.5 x 103 counts/day) during a 2-week baseline period. At baseline, the CFS patients reported significantly (P < 0.01) higher fatigue and muscle pain intensity compared to controls but the groups did not differ in overall mood. CFS subjects increased their daily activity by 28 +/- 19.7% over a 4 week period. Overall mood and muscle pain worsened in the CFS patients with increased activity.

CONCLUSION: CFS patients were able to increase their daily physical activity for a period of four weeks. In contrast to previous studies fatigue, muscle pain, and overall mood did not improve with increased activity. Increased activity was not presented as a treatment which may account for the differential findings between this and previous studies. The results suggest that a daily “activity limit” may exist in this population. Future studies on the impact of physical activity on the symptoms of CFS patients are needed.

 

Source: Black CD, O’connor PJ, McCully KK. Increased daily physical activity and fatigue symptoms in chronic fatigue syndrome. Dyn Med. 2005 Mar 3;4(1):3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC555551/ (Full article)

 

Normal opioid tone and hypothalamic-pituitary-adrenal axis function in chronic fatigue syndrome despite marked functional impairment

Abstract:

OBJECTIVE: To determine whether the functional impairment seen in chronic fatigue syndrome (CFS) is associated with reduced levels of central opioids and/or deficiency of the hypothalamic-pituitary-adrenal (HPA) axis.

DESIGN: Single-blinded case-control study measuring functional and psychological status, basal hormonal parameters and ACTH/cortisol response to naloxone and ovine corticotrophin-releasing hormone (oCRH) vs. placebo in people with CFS and healthy controls.

PATIENTS: Twelve people with CFS and 11 age-matched controls.

MEASUREMENTS: Hormonal parameters: basal levels of 09:00 h plasma cortisol, dehydroepiandrosterone sulfate (DHEAS) and IGF-1. 24-h urinary free cortisol. Plasma ACTH and cortisol response to naloxone 125 microg/kg, oCRH 1 microg/kg and placebo (normal saline). Psychological parameters: SF-36, Hamilton Depression Score, Hospital Anxiety and Depression Scale and Fatigue Scale.

RESULTS: There were highly significant differences between the CFS subjects and the controls with respect to the measures of fatigue and physical functioning. However, there were no differences in basal levels of 09:00 h cortisol (367 +/- 37 vs. 331 +/- 39 nmol/l, P = 0.51), DHEAS (4.2 +/- 0.6 vs. 4.0 +/- 0.5 micromol/l, P = 0.81), 24-h urinary free cortisol (182 +/- 27 vs. 178 +/- 21 nmol/24 h, P = 0.91) or IGF-1 (145 +/- 19 vs. 130 +/- 11 microg/l, P = 0.52) between the CFS group and controls, respectively. There was also no difference between the groups with respect to the ACTH and cortisol response to either oCRH or naloxone.

CONCLUSIONS: Our data do not support an aetiological role for deficiency in central opioids or the HPA axis in the symptoms of CFS.

 

Source: Inder WJ1, Prickett TC, Mulder RT. Normal opioid tone and hypothalamic-pituitary-adrenal axis function in chronic fatigue syndrome despite marked functional impairment. Clin Endocrinol (Oxf). 2005 Mar;62(3):343-8. http://www.ncbi.nlm.nih.gov/pubmed/15730417

 

 

Supporting people with severe myalgic encephalomyelitis

Abstract:

This article aims to raise nurses’ awareness of myalgic encephalomyelitis (ME) also known as chronic fatigue syndrome (CFS). Key symptoms are presented along with possible service responses and treatment options. It emphasises that this condition is often misunderstood but that it can be serious and more research is needed to promote better understanding of the physical symptoms.

 

Source: Crowhurst G. Supporting people with severe myalgic encephalomyelitis. Nurs Stand. 2005 Feb 2-8;19(21):38-43. http://www.ncbi.nlm.nih.gov/pubmed/15727017

 

A randomized controlled graded exercise trial for chronic fatigue syndrome: outcomes and mechanisms of change

Abstract:

The aim of this study was to investigate the potential mechanisms underlying the efficacy of graded exercise therapy for chronic fatigue syndrome (CFS). Forty-nine CFS patients were randomized to a 12-week graded exercise programme or to standard medical care. At the end of treatment the exercise group rated themselves as significantly more improved and less fatigued than the control group. A decrease in symptom focusing rather than an increase in fitness mediated the treatment effect. Graded exercise appears to be an effective treatment for CFS and it operates in part by reducing the degree to which patients focus on their symptoms.

 

Source: Moss-Morris R, Sharon C, Tobin R, Baldi JC. A randomized controlled graded exercise trial for chronic fatigue syndrome: outcomes and mechanisms of change. J Health Psychol. 2005 Mar;10(2):245-59. http://www.ncbi.nlm.nih.gov/pubmed/15723894

 

Chronic fatigue syndrome: assessment of increased oxidative stress and altered muscle excitability in response to incremental exercise

Abstract:

OBJECTIVES: Because the muscle response to incremental exercise is not well documented in patients suffering from chronic fatigue syndrome(CFS), we combined electrophysiological (compound-evoked muscle action potential, M wave), and biochemical (lactic acid production, oxidative stress) measurements to assess any muscle dysfunction in response to a routine cycling exercise.

DESIGN: This case-control study compared 15 CFS patients to a gender-, age- and weight-matched control group (n=11) of healthy subjects.

INTERVENTIONS: All subjects performed an incremental cycling exercise continued until exhaustion.

MAIN OUTCOME MEASURES: We measured the oxygen uptake (VO2), heart rate (HR), systemic blood pressure, percutaneous O2 saturation (SpO2), M-wave recording from vastus lateralis, and venous blood sampling allowing measurements of pH (pHv), PO2 (PvO2), lactic acid (LA), and three markers of the oxidative stress (thiobarbituric acid-reactive substances, TBARS, reduced glutathione, GSH, and ascorbic acid, RAA).

RESULTS: Compared with control, in CFS patients (i) the slope of VO2 versus work load relationship did not differ from control subjects and there was a tendency for an accentuated PvO2 fall at the same exercise intensity, indicating an increased oxygen uptake by the exercising muscles; (ii) the HR and blood pressure responses to exercise did not vary; (iii) the anaerobic pathways were not accentuated; (iv) the exercise-induced oxidative stress was enhanced with early changes in TBARS and RAA and enhanced maximal RAA consumption; and (v) the M-wave duration markedly increased during the recovery period.

CONCLUSIONS: The response of CFS patients to incremental exercise associates a lengthened and accentuated oxidative stress together with marked alterations of the muscle membrane excitability. These two objective signs of muscle dysfunction are sufficient to explain muscle pain and postexertional malaise reported by our patients.

 

Source: Jammes Y, Steinberg JG, Mambrini O, Brégeon F, Delliaux S. Chronic fatigue syndrome: assessment of increased oxidative stress and altered muscle excitability in response to incremental exercise. J Intern Med. 2005 Mar;257(3):299-310. http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2005.01452.x/full (Full article)

 

Variability of the RNase L isoform ratio (37 kiloDaltons/83 kiloDaltons) in diagnosis of chronic fatigue syndrome

Chronic fatigue syndrome (CFS) is a disorder characterized by debilitating fatigue whose etiology and pathophysiology remain unclear. Previous studies showed abnormalities of the RNase L pathway in peripheral blood mononuclear cells (PBMC) from patients with CFS (1, 2). The ratio of RNase L isoforms (37 kDa/83 kDa ratio [37/83 R]) has therefore been proposed as a potential biochemical marker of CFS, with a sensitivity of 91% and a specificity of 71% when the cutoff ratio was 0.4 (3).

You can read the rest of this article here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC549313/

 

Source: Tiev KP, Briant M, Ziani M, Cabane J, Demettre E, Lebleu B. Variability of the RNase L isoform ratio (37 kiloDaltons/83 kiloDaltons) in diagnosis of chronic fatigue syndrome. Clin Diagn Lab Immunol. 2005 Feb;12(2):366. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC549313/ (Full article)

 

Treatments for chronic fatigue syndrome

Abstract:

AIMS: To review studies evaluating the treatment of chronic fatigue and chronic fatigue syndrome, to describe predictors of response to treatment and to discuss the role of the occupational health physician.

METHODS: A literature search was carried out using Medline and PsychInfo.

RESULTS: Studies evaluating cognitive behaviour therapy, graded exercise therapy, pharmacological interventions (e.g. antidepressants and corticosteroids), immunological interventions and nutritional supplements were reviewed. The most promising results have been found with cognitive behaviour therapy and graded exercise therapy, and some predictors of outcome have been identified. Most of the other interventions were evaluated in just one or two studies and therefore evidence is insufficient to draw firm conclusions.

CONCLUSIONS: By applying the models of fatigue that form the bases for cognitive behaviour therapy and graded exercise therapy, occupational health physicians may play an important role in helping the patients with chronic fatigue syndrome to reduce their symptoms, improve their functioning and return to work.

 

Source: Rimes KA, Chalder T. Treatments for chronic fatigue syndrome. Occup Med (Lond). 2005 Jan;55(1):32-9. http://occmed.oxfordjournals.org/content/55/1/32.long (Full article)

 

A systematic review describing the prognosis of chronic fatigue syndrome

Abstract:

AIM: To perform a systematic review of studies describing the prognosis of chronic fatigue (CF) and chronic fatigue syndrome (CFS) and to identify occupational outcomes from such studies.

METHOD: A literature search was used to identify all studies describing the clinical follow-up of patients following a diagnosis of CF or CFS. The prognosis is described in terms of the proportion of individuals improved during the period of follow-up. Return to work, other medical illnesses and death as outcomes are also considered, as are variables which may influence prognosis.

RESULTS: Twenty-eight articles met the inclusion criteria and, for the 14 studies of subjects meeting operational criteria for CFS, the median full recovery rate was 5% (range 0-31%) and the median proportion of patients who improved during follow-up was 39.5% (range 8-63%). Less fatigue severity at baseline, a sense of control over symptoms and not attributing illness to a physical cause were all associated with a good outcome. Return to work at follow-up ranged from 8 to 30% in the three studies that considered this outcome.

CONCLUSIONS: Full recovery from untreated CFS is rare. The prognosis for an improvement in symptoms is less gloomy. This review looks at the course of CF/CFS without systematic intervention. However, there is increasing evidence for the effectiveness of cognitive behavioural and graded exercise therapies. Medical retirement should be postponed until a trial of such treatment has been given.

 

Source: Cairns R, Hotopf M. A systematic review describing the prognosis of chronic fatigue syndrome. Occup Med (Lond). 2005 Jan;55(1):20-31. http://occmed.oxfordjournals.org/content/55/1/20.long (Full artricle)

 

Epidemiology of chronic fatigue syndrome

Abstract:

BACKGROUND: Chronic fatigue syndrome (CFS) is a controversial disorder with different case definitions, aetiological models and proposed treatments. An epidemiological approach is likely to bring some clarity to the field.

AIM: The aim of this article is to review the literature on the epidemiology of fatigue, chronic fatigue and CFS.

METHOD: A literature search was conducted using the databases Medline and Pubmed as well as the reference lists of recent reviews to identify the relevant studies. The aim was not to do a systematic review but to review the key studies in the area to highlight the methodological issues.

RESULTS: The review is organized according to the following areas: the prevalence of fatigue and chronic fatigue, the prevalence and incidence of CFS, epidemiological associations such as gender, social class and psychiatric co-morbidity and CFS in special groups such as those recovering from a viral infection, specific occupational groups and Gulf War veterans.

CONCLUSION: While fatigue as a symptom is very common, CFS is relatively rare. Many of the epidemiological associations seen in specialist clinics are not found in community samples. It is unlikely that one specific causal factor can explain CFS. Future studies should go beyond estimating the prevalence to testing more complex aetiological models.

 

Source: Ranjith G. Epidemiology of chronic fatigue syndrome. Occup Med (Lond). 2005 Jan;55(1):13-9. http://occmed.oxfordjournals.org/content/55/1/13.long (Full article)