Individuals’ experience of chronic fatigue syndrome/myalgic encephalomyelitis: an interpretative phenomenological analysis

Abstract:

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a condition of unknown aetiology that consists of symptoms such as fatigue, muscle and joint pain, gastric problems and a range of neurological disturbances. Due to the fact that these symptoms are complaints that most individuals will experience to a varying degree, it seems pertinent to investigate the processes by which those with CFS/ME conceptualise their symptoms and the experience of reaching a diagnosis.

Participants were recruited from local CFS/ME support groups. Eight semi-structured telephone interviews were conducted and transcribed, and the verbatim transcriptions were analysed according to interpretative phenomenological analysis (IPA). Six distinct themes were uncovered that illustrated the participants’ experience and perception of their symptoms. These included symptomatology and illness course, interference with daily and working life, frequency of symptoms, external information, diagnosis and treatment.

The findings were discussed in terms of internal and external cues related to symptom perception and the discovery that the possession of a diagnosis did not necessarily signify the end of the journey.

 

Source: Arroll MA, Senior V. Individuals’ experience of chronic fatigue syndrome/myalgic encephalomyelitis: an interpretative phenomenological analysis. Psychol Health. 2008;23(4):443-58. doi: 10.1080/14768320701246469. https://www.ncbi.nlm.nih.gov/pubmed/25160578

 

Memory for fatigue in chronic fatigue syndrome: the relation between weekly recall and momentary ratings

Abstract:

BACKGROUND: Understanding how patients with chronic fatigue syndrome (CFS) recall their fatigue is important because fatigue is a core clinical dimension of this poorly understood illness.

PURPOSE: This study assessed the associations between momentary fatigue ratings and weekly recall of fatigue in 71 participants with CFS.

METHOD: During the three-week data collection period, fatigue intensity was recorded six times a day in electronic diaries. At the end of each week, participants were asked to recall their fatigue intensity for that week. Statistical analyses were done with t-tests and Pearson’s and intraclass correlations.

RESULTS: Average weekly recall of fatigue intensity was significantly higher than average momentary ratings. Furthermore, moderate to high Pearson’s correlations and intraclass correlations (consistency and absolute agreement) between recall and momentary fatigue ratings were found.

CONCLUSION: Individuals with CFS recalled consistently higher levels of fatigue in comparison to real-time momentary ratings, yet the level of agreement between the two measures was moderate to high. These findings may have implications for the conduct of office examinations for CFS.

 

Source: Friedberg F, Sohl SJ. Memory for fatigue in chronic fatigue syndrome: the relation between weekly recall and momentary ratings. Int J Behav Med. 2008 Jan-Mar;15(1):29-33. Doi: 10.1080/10705500701783850. https://www.ncbi.nlm.nih.gov/pubmed/18444018

 

Can exercise limits prevent post-exertional malaise in chronic fatigue syndrome? An uncontrolled clinical trial

Abstract:

OBJECTIVE: It was hypothesized that the use of exercise limits prevents symptom increases and worsening of their health status following a walking exercise in people with chronic fatigue syndrome.

DESIGN: An uncontrolled clinical trial (semi-experimental design).

SETTING: Outpatient clinic of a university department.

SUBJECTS: Twenty-four patients with chronic fatigue syndrome.

INTERVENTIONS: Subjects undertook a walking test with the two concurrent exercise limits. Each subject walked at an intensity where the maximum heart rate was determined by heart rate corresponding to the respiratory exchange ratio = 1.0 derived from a previous submaximal exercise test and for a duration calculated from how long each patient felt they were able to walk.

MAIN OUTCOME MEASURES: The Short Form 36 Health Survey or SF-36, the Chronic Fatigue Syndrome Symptom List, and the Chronic Fatigue Syndrome -Activities and Participation Questionnaire were filled in prior to, immediately after and 24 hours after exercise.

RESULTS: The fatigue increase observed immediately post-exercise (P= 0.006) returned to pre-exercise levels 24 hours post-exercise. The increase in pain observed immediately post-exercise was retained at 24 hours post-exercise (P=0.03). Fourteen of the 24 subjects experienced a clinically meaningful change in bodily pain (change of SF-36 bodily pain score > or =10); 6 indicated that the exercise bout had slightly worsened their health status, and 2 had a clinically meaningful decrease in vitality (change of SF-36 vitality score > or =20). There was no change in activity limitations/participation restrictions.

CONCLUSION: It was shown that the use of exercise limits (limiting both the intensity and duration of exercise) prevents important health status changes following a walking exercise in people with chronic fatigue syndrome, but was unable to prevent short-term symptom increases.

 

Source: Nijs J, Almond F, De Becker P, Truijen S, Paul L. Can exercise limits prevent post-exertional malaise in chronic fatigue syndrome? An uncontrolled clinical trial. Clin Rehabil. 2008 May;22(5):426-35. Doi: 10.1177/0269215507084410. https://www.ncbi.nlm.nih.gov/pubmed/18441039

 

Is chronic fatigue syndrome caused by a rare brain infection of a common, normally benign virus?

Abstract:

Chronic fatigue syndrome (CFS) is a disabling disease of unknown aetiology. A variety of factors have been suggested as possible causes. Although the symptoms and clinical findings are heterogeneous, the syndrome is sufficiently distinct, at least in relation to the more obvious cases, that a common explanation seems likely. In this paper, it is proposed that the disease is caused by a ubiquitous, but normally benign virus, e.g., one of the circoviruses.

Circoviruses are chronically present in a majority of people, but are rarely tested for diagnostically. Normally these viruses do not penetrate the blood-brain barrier, but exceptions have been reported, and related viruses cause disease in the central nervous system of animals.

The flu-like illness that often precedes the onset of CFS may either suppress immune function, causing an increased viremia, and/or lower the blood-brain barrier. In both cases the result may be that a virus already present in the blood enters the brain. It is well known that zoonotic viruses typically are more malignant than viruses with a long history of host-virus evolution. Similarly, a virus reaching an unfamiliar organ may cause particular problems.

 

Source: Grinde B. Is chronic fatigue syndrome caused by a rare brain infection of a common, normally benign virus? Med Hypotheses. 2008 Aug;71(2):270-4. doi: 10.1016/j.mehy.2008.03.014. Epub 2008 Apr 25. https://www.ncbi.nlm.nih.gov/pubmed/18440157

 

Breathing retraining in patients with chronic fatigue syndrome: a pilot study

Abstract:

The study aimed to 1) examine the point prevalence of asynchronous breathing in chronic fatigue syndrome (CFS) patients; 2) examine whether CFS patients with an asynchronous breathing pattern present with diminished lung function in comparison with CFS patients with a synchronous breathing pattern; and 3) examine whether one session of breathing retraining in CFS patients with an asynchronous breathing pattern is able to improve lung function.

Twenty patients fulfilling the diagnostic criteria for CFS were recruited for participation in a pilot controlled clinical trial with repeated measures. Patients presenting with an asynchronous breathing pattern were given 20-30 minutes of breathing retraining. Patients presenting with a synchronous breathing pattern entered the control group and received no intervention. Of the 20 enrolled patients with CFS, 15 presented with a synchronous breathing pattern and the remaining 5 patients (25%) with an asynchronous breathing pattern. Baseline comparison revealed no group differences in demographic features, symptom severity, respiratory muscle strength, or pulmonary function testing data (spirometry). In comparison to no treatment, the session of breathing retraining resulted in an acute (immediately postintervention) decrease in respiratory rate (p < 0.001) and an increase in tidal volume (p < 0.001). No other respiratory variables responded to the session of breathing retraining.

In conclusion, the present study provides preliminary evidence supportive of an asynchronous breathing pattern in a subgroup of CFS patients, and breathing retraining might be useful for improving tidal volume and respiratory rate in CFS patients presenting with an asynchronous breathing motion.

 

Source: Nijs J, Adriaens J, Schuermans D, Buyl R, Vincken W. Breathing retraining in patients with chronic fatigue syndrome: a pilot study. Physiother Theory Pract. 2008 Mar-Apr;24(2):83-94. Doi: 10.1080/09593980701429406. https://www.ncbi.nlm.nih.gov/pubmed/18432511

 

Chronic fatigue syndrome in male Gulf war veterans and civilians: a further test of the single syndrome hypothesis

Abstract:

Different modes of fatigue onset in male Gulf War veterans versus male civilians raise the possibility that chronic fatigue syndrome (CFS) may not be a single disease entity. We addressed this issue by comparing 45 male veterans with CFS to 84 male civilians who satisfied identical case criteria. All were evaluated for fibromyalgia (FM), multiple chemical sensitivity and psychiatric comorbidity. CFS was more likely to present in a sudden flu-like manner in civilians than veterans (p < .01) and comorbid FM was more prevalent in civilians (p < .01). These findings question the assumption that all patients with CFS suffer from the same underlying disorder.

 

Source: Ciccone DS, Weissman L, Natelson BH. Chronic fatigue syndrome in male Gulf war veterans and civilians: a further test of the single syndrome hypothesis. J Health Psychol. 2008 May;13(4):529-36. Doi: 10.1177/1359105308088525. https://www.ncbi.nlm.nih.gov/pubmed/18420761

 

Dynamics of sleep stage transitions in healthy humans and patients with chronic fatigue syndrome

Abstract:

Physiological and/or pathological implications of the dynamics of sleep stage transitions have not, to date, been investigated. We report detailed duration and transition statistics between sleep stages in healthy subjects and in others with chronic fatigue syndrome (CFS); in addition, we also compare our data with previously published results for rats.

Twenty-two healthy females and 22 female patients with CFS, characterized by complaints of unrefreshing sleep, underwent one night of polysomnographic recording. We find that duration of deep sleep (stages III and IV) follows a power-law probability distribution function; in contrast, stage II sleep durations follow a stretched exponential and stage I, and REM sleep durations follow an exponential function. These stage duration distributions show a gradually increasing departure from the exponential form with increasing depth of sleep toward a power-law type distribution for deep sleep, suggesting increasing complexity of regulation of deeper sleep stages. We also find a substantial number of REM to non-REM sleep transitions in humans, while this transition is reported to be virtually nonexistent in rats.

The relative frequency of this REM to non-REM sleep transition is significantly lower in CFS patients than in controls, resulting in a significantly greater relative transition frequency of moving from both REM and stage I sleep to awake. Such an alteration in the transition pattern suggests that the normal continuation of sleep in light or REM sleep is disrupted in CFS. We conclude that dynamic transition analysis of sleep stages is useful for elucidating yet-to-be-determined human sleep regulation mechanisms with pathophysiological implications.

 

Source: Kishi A, Struzik ZR, Natelson BH, Togo F, Yamamoto Y. Dynamics of sleep stage transitions in healthy humans and patients with chronic fatigue syndrome. Am J Physiol Regul Integr Comp Physiol. 2008 Jun;294(6):R1980-7. doi: 10.1152/ajpregu.00925.2007. Epub 2008 Apr 16. http://ajpregu.physiology.org/content/294/6/R1980.long

 

Contentious diseases–a medico-social phenomenon from an insurance medicine perspective

Abstract:

A group of illnesses that are difficult to assess objectively, comprising such conditions as fibromyalgia, chronic fatigue syndrome, attention-deficit hyperactivity disorder, whiplash injury, and last but not least a multitude of somatoform disorders, has become a growing concern to Western health care systems and insurance industries.

Thus far, the medical literature has failed to provide informative overviews of this group, which at first glance admittedly seems to be rather heterogeneous. If at all, the disorders have been grouped together under the term ,,controversial illnesses” to differentiate them from other diseases. The insurance industry – and claims departments, in particular – are increasingly having to deal with this rapidly growing phenomenon, which affects not only life business, but also health, worker’s compensation and motor third-party liability. When paying compensation and settling claims, insurers are often left with a feeling that the illness may have been ,,imaginary” or aggravated. Is there a common basis for this new disorder mega-trend – independent of the recognition of the conditions by medical associations?

This article aims at providing an overview of the common characteristics of the group of disorders, including a description of the key physical, psychological and social aspects. In particular, it is intended to deepen insurers’ understanding of the risks arising from social change. The article also examines the disorder prevalence in Western societies and the possible causes of the significant increase.

 

Source: Regenauer A. Contentious diseases–a medico-social phenomenon from an insurance medicine perspective. Versicherungsmedizin. 2008 Mar 1;60(1):3-7. [Article in German] https://www.ncbi.nlm.nih.gov/pubmed/18405228

 

Memory for fatigue in chronic fatigue syndrome: relationships to fatigue variability, catastrophizing, and negative affect

Abstract:

Fatigue in chronic fatigue syndrome (CFS) is usually assessed with retrospective measures rather than real-time momentary symptom assessments. In this study, the authors hypothesized that in participants with CFS, discrepancies between recalled and momentary fatigue would be related to catastrophizing, anxiety, and depression and to variability of momentary fatigue. They also expected that catastrophizing, anxiety, and depression would be associated with momentary fatigue. The authors asked 53 adults with CFS to carry electronic diaries for 3 weeks and record their experiences of momentary fatigue. The authors assessed participants’ fatigue recall with weekly ratings and administered questionnaires for catastrophizing, depression, and anxiety. Recall discrepancy was significantly related to the variability of momentary fatigue. In addition, catastrophizing, depression, and momentary fatigue were all significantly related to recall discrepancy. Catastrophizing, depression, anxiety, and momentary negative affect were all significantly associated with momentary fatigue. The findings suggest that momentary fatigue in patients with CFS is related to modifiable psychological factors.

 

Source: Sohl SJ, Friedberg F. Memory for fatigue in chronic fatigue syndrome: relationships to fatigue variability, catastrophizing, and negative affect. Behav Med. 2008 Spring;34(1):29-38. doi: 10.3200/BMED.34.1.29-38. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2567050/ (Full article)

 

Sexual dysfunction as related to severity of fatigue in women with CFS

Abstract:

To assess sexual function in women with chronic fatigue syndrome. The study included 27 women, aged 20 to 45 years, with chronic fatigue syndrome (CFS) and 15 healthy female controls. Sexual function was measured with the Golombok Rust Inventory of Sexual Satisfaction (GRISS) questionnaire and five clinical questions. In the patient group, total fatigue impact scale (FIS) score correlated with the GRISS satisfaction (r:-0.471, P < .005), avoidance (r: 0.632, P < .001) and sensuality (r: -0.445, P = .008) subscales. The GRISS satisfaction, avoidance, and sensuality subscale results and the fact of seeing the sexual act as a negative experience correlated with the intensity of fatigue in women with CFS.

 

Source: Blazquez A, Ruiz E, Vazquez A, de Sevilla TF, Garcia-Quintana A, Garcia-Quintana J, Alegre J. Sexual dysfunction as related to severity of fatigue in women with CFS. J Sex Marital Ther. 2008;34(3):240-7. doi: 10.1080/00926230701866232. https://www.ncbi.nlm.nih.gov/pubmed/18398762