recovery – Page 2 – American ME and CFS Society

Patients’ hopes for recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Toward a “recovery in” framework

Abstract:

Objective: There is no consensus on recovery from myalgic encephalomyelitis and chronic fatigue syndrome, which has spawned debates when interpreting outcome research. Within these debates, the patient voice is often neglected. This study aimed to understand how patients conceptualize recovery – regarding the definition and possibility of recovery.

Method: We conducted in-depth, semi-structured interviews with 10 older (above age 50) female patients with myalgic encephalomyelitis or chronic fatigue syndrome. Data were analyzed using a deductive thematic analysis.

Results: Our sample viewed recovery as functioning without fear of relapse, returning to previous roles and identities, and achieving a sustained absence of symptoms. Participants expressed skepticism that reaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome exists but working toward significant improvement through coping is a viable goal. Although many accepted they would never reclaim full functioning, participants continued to experience uncertainty about their future with unclear prognostic goals and limited treatment options.

Discussion: Recovery is more than just symptom reduction. Outcome research should incorporate well-being measures like identity, meaning and quality of life, and personal empowerment to enhance recovery definitions. When communicating treatment goals, providers might convey cautious optimism for complete symptom remission, while emphasizing that living a fulfilling life through effective coping strategies is possible.

Source: Devendorf AR, Rown AA, Jason LA. Patients’ hopes for recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Toward a “recovery in” framework. Chronic Illn. 2020;16(4):307-321. doi:10.1177/1742395318815965 https://pubmed.ncbi.nlm.nih.gov/32772569/

Paediatric Chronic Fatigue Syndrome Patients’ and Parents’ Perceptions of Recovery

Abstract:

Objectives: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is common in children and adolescents; however, little is known about how we should define recovery. This study aims to explore perceptions of recovery held by paediatric patients with CFS/ME and their parents.

Methods: Children with CFS/ME and their parents were recruited through a single specialist paediatric CFS/ME service. Data were collected through semistructured interviews with children and parents. The interview questions explored how participants would know if they/their child had recovered from CFS/ME. Thematic analysis was used to identify patterns within the data.

Results: Twenty-one children with CFS/ME, twenty mothers and two fathers were interviewed. Some children found it hard to define recovery as the illness had become a ‘new normal’. Others thought recovery would indicate returning to pre-morbid levels of activity or achieving the same activity level as peers (socialising, education and leisure activities). Increased flexibility in routines and the absence of payback after activities were important. The interviews highlighted the concept of recovery as highly individual with wide variation in symptoms experienced, type and level of activity that would signify recovery. Parents describe how changes in mood and motivation would signify their child’s recovery, but children did not reflect on this.

Conclusion: Some parents and children struggle to define what would constitute complete recovery. However, signs of recovery were more easily identifiable. Definitions of recovery went far beyond symptom reduction and were focused towards rebuilding lives.

Source: Harland MR, Parslow RM, Anderson N, Byrne D, Crawley E. Paediatric chronic fatigue syndrome patients’ and parents’ perceptions of recovery. BMJ Paediatr Open. 2019;3(1):e000525. Published 2019 Dec 2. doi:10.1136/bmjpo-2019-000525 https://bmjpaedsopen.bmj.com/content/3/1/e000525 (Full text)

Prevalence and predictors of recovery from chronic fatigue syndrome in a routine clinical practice

Abstract:

Cognitive behavioural therapy (CBT) is one of the treatments of choice for patients with chronic fatigue syndrome (CFS). However, the factors that predict recovery are unknown. The objective of this study was to ascertain the recovery rate among CFS patients receiving CBT in routine practice and to explore possible predictors of recovery.

Recovery was defined as no longer meeting Oxford or CDC criteria for CFS measured at 6 months follow-up. A composite score representing full recovery additionally included the perception of improvement, and normal population levels of fatigue and of physical functioning. Logistic regression was used to examine predictors of recovery.

Predictors included age, gender, cognitive and behavioural responses to symptoms, work and social adjustment, beliefs about emotions, perfectionism, anxiety and depression at baseline. At 6 months follow-up 37.5% of the patients no longer met either the Oxford or the CDC criteria for CFS while 18.3% were fully recovered.

Multivariate analyses showed that worse scores on the work and social adjustment scale, unhelpful beliefs about emotions, high levels of depression and older age were associated with reduced odds for recovery. Recovery rates in this routine practice were comparable to previous RCTs. There was a wide spectrum of significant predictors for recovery.

Source: Flo E, Chalder T. Prevalence and predictors of recovery from chronic fatigue syndrome in a routine clinical practice. Behav Res Ther. 2014 Dec;63:1-8. doi: 10.1016/j.brat.2014.08.013. Epub 2014 Aug 26. http://www.sciencedirect.com/science/article/pii/S0005796714001429 (Full article)

Adolescent chronic fatigue syndrome: a follow-up study

Abstract:

OBJECTIVE: To describe the symptomatic and educational long-term outcomes, health care use, and risk factors of nonrecovery in adolescent chronic fatigue syndrome (CFS).

DESIGN: Follow-up study.

SETTING: Academic pediatric hospital.

PARTICIPANTS: Sixty adolescents with CFS.

INTERVENTIONS: Regular care.

OUTCOME MEASURES: The Checklist Individual Strength, Child Health Questionnaire, and a general questionnaire regarding further symptoms, school attendance, work attendance, and treatment.

RESULTS: Complete measurements were returned for 54 adolescents (90%). At initial assessment, their mean (SD) age was 16.0 (1.5) years and 20.4% were male. The mean follow-up duration was 2.2 years. At follow-up, the mean (SD) age was 18.2 (1.5) years; 28 adolescents (51.9%) had nearly complete improvement of symptoms but 26 (48.1%) did not experience improvement. Adolescents who attended school (n = 41) had missed an average of 33% of classes during the last month. The rest (n = 13) had worked an average of 38.7% of a full-time job during the last month. A total of 66.7% of subjects were treated by a physiotherapist, 38.9% were clinically treated in rehabilitation, 48.1% had received psychological support, and 53.7% had used alternative treatment.

CONCLUSIONS: About half of the adolescents had recovered from CFS at follow-up. The other half was still severely fatigued and physically impaired. Health care use had been high, and school and work attendance were low. Older age at inclusion was a risk factor, and pain, poor mental health, self-esteem, and general health perception at outcome were associated with an unfavorable outcome. Future research should focus on customizing existing treatment and studying additional treatment options.

Source: van Geelen SM, Bakker RJ, Kuis W, van de Putte EM. Adolescent chronic fatigue syndrome: a follow-up study. Arch Pediatr Adolesc Med. 2010 Sep;164(9):810-4. doi: 10.1001/archpediatrics.2010.145. https://www.ncbi.nlm.nih.gov/pubmed/20819962

Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome

Abstract:

OBJECTIVE: To describe the educational, social, and symptomatic outcome of children and adolescents with chronic fatigue syndrome 13 years after illness onset.

METHODS: Between January 1984 and December 1987, 46 children and adolescents developed an illness suggestive of chronic fatigue syndrome. Follow-up questionnaires were obtained from 35 participants an average of 13 years after illness onset. Data were obtained concerning subsequent medical diagnoses, amount of school missed, presence and severity of current symptoms, and subjective assessment of degree of illness resolution.

RESULTS: Of the 35 participants, 24 were female (68.6%) and 11 were male (31.4%). Average age at illness onset was 12.1 years. Eight participants (22.9%) had an acute onset of symptoms, 27 (77.1%) had a gradual onset. No participant received an alternative medical diagnosis that could have explained the symptom complex between illness onset and follow-up. Thirteen participants (37.1%) considered themselves resolved of illness at follow-up; 15 participants (42.9%) considered themselves well but not resolved; 4 (11.4%) considered themselves chronically ill; and 3 (8.6%) considered themselves more ill than during the early years of illness. Correlation with the Medical Outcomes Study Short Form Health Survey was good for current level of symptoms and degree of recovery. Eight participants (22.9%) missed >2 years of school, and 5 of these were still ill at follow-up. Amount of school missed correlated with both illness severity at follow-up and perceived social impact of the illness.

CONCLUSIONS: These data demonstrate the presence of an illness consistent with the current definition of chronic fatigue syndrome. Eighty percent of children and adolescents affected had a satisfactory outcome from their fatiguing illness, although the majority of these participants had mild to moderate persisting symptoms. Twenty percent of participants remain ill with significant symptoms and activity limitation 13 years after illness onset. Chronic fatigue syndrome in children and adolescents may result in persistent somatic symptoms and disability in a minority of those affected.

Source: Bell DS, Jordan K, Robinson M. Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome. Pediatrics. 2001 May;107(5):994-8. http://www.ncbi.nlm.nih.gov/pubmed/11331676

Recovery from chronic fatigue syndrome associated with changes in neuroendocrine function

[This is a case study on graded exercise. You can read the full report here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1280066/pdf/11220065.pdf]

Source: Sharma A, Oyebode F, Kendall MJ, Jones DA. Recovery from chronic fatigue syndrome associated with changes in neuroendocrine function. J R Soc Med. 2001 Jan;94(1):26-7. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1280066/ (Full article)

Effect of growth hormone treatment in patients with chronic fatigue syndrome: a preliminary study

Abstract:

The efficacy of growth hormone (GH) therapy was evaluated in patients with chronic fatigue syndrome (CFS) who had peak serum GH levels below 10 microg/l during stage-controlled sleep. Twenty patients (7 men, 13 women; age range, 30-60 years) with CFS were randomized to receive placebo or GH therapy, 6.7 microg/kg/day (0.02 IU/kg/day), for 12 weeks.

Following this double-blind treatment period, the 17 patients remaining in the study were given GH therapy at the above dose for an open period of 9 months. Mean (+/- SD) serum levels of insulin-like growth factor I (IGF-I) increased during GH treatment, from 173 +/- 46 microg/I to 296 +/- 89 microg/l (P < 0.001); IGF-I SDS values increased from -0.45 +/- 1.14 to +1.43 +/- 1.09 (P < 0.001).

Fat-free mass and total body water were significantly increased after 12 months of treatment. Although quality of life, as assessed using two different questionnaires, did not improve significantly during GH treatment, four patients were able to resume work after a long period of sick leave.

Source: Moorkens G, Wynants H, Abs R. Effect of growth hormone treatment in patients with chronic fatigue syndrome: a preliminary study. Growth Horm IGF Res. 1998 Apr;8 Suppl B:131-3. http://www.ncbi.nlm.nih.gov/pubmed/10990148

Mouse running activity is lowered by Brucella abortus treatment: a potential model to study chronic fatigue

Abstract:

Chronic fatigue syndrome, which can occur after acute infection and last for years, is characterized by severe and persistent fatigue. Others have reported decreases in mouse running activity following infection and have suggested this may provide an animal model for studying chronic fatigue.

Voluntary running is a highly motivated activity in mice, which will often run 5-7 mi/day in our laboratory. Following 2 weeks of acclimation to running wheels with food and water available ad lib, female BALB/c mice received 0.2-mL tail vein injections of killed Brucella abortus (BA) or saline vehicle. Subsequently the effects on voluntary running and grooming behavior were determined.

Injection of BA caused an immediate large decrease in running and a lack of grooming. Vehicle injections produced no changes in behavior. After the first several days of reduced running behavior, levels of running and grooming slowly returned back to normal over the next 2-4 weeks, with substantial individual differences in the rate of recovery.

The pattern of running during recovery was intriguing in that BA mice first ran at normal levels just after the lights went out, but they stopped after only 1-2 h. As recovery proceeded, they gradually increased the duration of the running bout during the night. Because this model uses voluntary exertion and the ability to run for longer periods of time characterizes recovery, the model may be a good one for studying the biologic underpinnings of chronic fatigue.

Source: Ottenweller JE, Natelson BH, Gause WC, Carroll KK, Beldowicz D, Zhou XD, LaManca JJ. Mouse running activity is lowered by Brucella abortus treatment: a potential model to study chronic fatigue. Physiol Behav. 1998 Mar;63(5):795-801. http://www.ncbi.nlm.nih.gov/pubmed/9618001

Life-events and the course of chronic fatigue syndrome

Abstract:

Life-events have been implicated in the onset and course of various illnesses. The present study examined their role in chronic fatigue syndrome, in the context of the ongoing illness. Using the PERI list, events experienced during the past year were elicited in interviews with 130 patients. The analyses were restricted to those events implying moderate or major life change, and separate analyses were carried out for positive and negative events.

Positive events were found to be associated with lower scores for fatigue, impairment, anxiety and depression, as assessed at the time of the life-events interview, and these relationships were also significant when prior scores at the beginning of the year were statistically controlled. Negative life-events were associated with higher anxiety, but were unrelated to the other measures.

It was concluded that positive life-events and experiences may contribute to the process of recovery in chronic fatigue syndrome, though their occurrence may also be facilitated by a preceding lifting of symptoms.

Source: Ray C, Jefferies S, Weir WR. Life-events and the course of chronic fatigue syndrome. Br J Med Psychol. 1995 Dec;68 ( Pt 4):323-31. http://www.ncbi.nlm.nih.gov/pubmed/8688371