Management – Page 3 – American ME and CFS Society

Patients’ Experiences and Effects of Non-Pharmacological Treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – A Scoping Mixed Methods Review

Abstract:

Purpose: The EU COST Action 15111 collaboration on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) aims to assess current research and identify knowledge gaps in Europe. Presently, our purpose is to map the effects of non-pharmacological therapies (NPTs) for ME/CFS, and what patients find important in the treatment process.

Methods: A scoping mixed methods literature review of European studies identified 16 papers fulfiling our inclusion criteria. The quantitative and qualitative studies were synthesized separately in tables. Additionally, extracts from the qualitative studies were subjected to translational analysis.

Results: Effect studies addressed cognitive behavioural therapy (CBT, n = 4), multimodal rehabilitation (n = 2) and activity-pacing (n = 2). CBT reduced fatigue scores more than usual care or waiting list controls. The effects of rehabilitation and activity-pacing were inconsistent. The contents, assessment methods and effects of rehabilitation and activity pacing studies varied. For patients, health professionals’ recognition of ME/CFS and support were crucial, but they expressed ambiguous experiences of what the NPTs entail.

Conclusions: Methodological differences make comparisons across NPTs impossible, and from a patient perspective the relevance of the specific contents of NPTs are unclear. Future well-designed studies should focus on developing NPTs tailored to patients’ concerns and evaluation tools reflecting what is essential for patients.

Source: Mengshoel AM, Helland IB, Meeus M, Castro-Marrero J, Pheby D, Bolle Strand E. Patients’ experiences and effects of non-pharmacological treatment for myalgic encephalomyelitis/chronic fatigue syndrome – a scoping mixed methods review. Int J Qual Stud Health Well-being. 2020;15(1):1764830. doi:10.1080/17482631.2020.1764830 https://pubmed.ncbi.nlm.nih.gov/32432991/ (Full text)

Heart Rate Thresholds to Limit Activity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients (Pacing): Comparison of Heart Rate Formulae and Measurements of the Heart Rate at the Lactic Acidosis Threshold during Cardiopulmonary Exercise Testing

Abstract:

Introduction: Based on the hypothesis that oxidative metabolism is impaired in ME/CFS, a previous study recommended a pacing self-management strategy to prevent post-exertional malaise. This strategy involved a prescription to maintain a heart rate below the anaerobic threshold during physical activities. In the absence of lactate sampling or a cardiopulmonary exercise test (CPET), the pacing self-management formula defines 55% of the age-specific predicted maximal heart rate as the heart rate at the anaerobic threshold. Thus far there has been no empiric evidence to test this self-pacing method of predicting heart rate at anaerobic threshold. The aim of this study was to compare published formula-derived heart rates at the anaerobic threshold with the actual heart rate at the lactic acidosis threshold as determined by CPET.

Methods and Results: Adults with ME/CFS who had undergone a symptom-limited CPET were eligible for this study (30 males, 60 females). We analysed males and females separately because of sex-based differences in peak oxygen consumption. From a review paper, formulae to calculate maximal predicted heart rate were used for healthy subjects. We compared the actual heart rate at the lactic acid threshold during CPET to the predicted heart rates determined by formulae. Using Bland-Altman plots, calculated bias: the mean difference between the actual CPET heart rate at the anaerobic threshold and the formula predicted heart rate across several formulae varied between -28 and 19 bpm in male ME/CFS patients. Even in formulae with a clinically acceptable bias, the limits of agreement (mean bias ± 2SD) were unacceptably high for all formulae. For female ME/CFS patients, bias varied between 6 and 23 bpm, but the limits of agreement were also unacceptably high for all formulae.

Conclusion: Formulae generated in an attempt to help those with ME/CFS exercise below the anaerobic threshold do not reliably predict actual heart rates at the lactic acidosis threshold as measured by a cardiopulmonary exercise test. Formulae based on age-dependent predicted peak heart rate multiplied by 55% have a wide age-specific variability and therefore have a limited application in clinical practice.

Source: van Campen, C. , Rowe, P. and Visser, F. (2020) Heart Rate Thresholds to Limit Activity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients (Pacing): Comparison of Heart Rate Formulae and Measurements of the Heart Rate at the Lactic Acidosis Threshold during Cardiopulmonary Exercise Testing. Advances in Physical Education, 10, 138-154. doi: 10.4236/ape.2020.102013. https://www.scirp.org/journal/paperinformation.aspx?paperid=100333 (Full text)

Paediatric patients with myalgic encephalomyelitis/chronic fatigue syndrome value understanding and help to move on with their lives

Abstract:

AIM: The aim of this study was to document qualitative questionnaire feedback regarding management from a cohort observational study of young people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

METHODS: Between 1991 and 2009, 784 paediatric patients, age 6-18 years, were diagnosed with ME/CFS following referral to a specialised clinic at the Royal Children’s Hospital, Melbourne. Over a 14-year period, feedback was requested on up to seven occasions. Management included the following: symptom management and a self-management lifestyle plan that included social, educational, physical and a pleasurable activity outside of home. They adjusted it by severity of illness, stage of education, family circumstances and life interests.

RESULTS: Questionnaires were returned from 626 (80%) with 44% providing feedback more than once. They reported that their management plan allowed them to regain control over their lives. They cited early diagnosis, empathetic, informed physicians, self-management strategies and educational liaison as helping them to function and remain socially engaged. Ongoing support, particularly assistance to navigate the education system, was essential for general well-being and ability to cope.

CONCLUSION: Young people valued regaining the control over their lives that was lost through illness, support to maintain social contacts and assistance to achieve educational and/or life goals.

Source: Rowe K. Paediatric patients with myalgic encephalomyelitis/chronic fatigue syndrome value understanding and help to move on with their lives. Acta Paediatr. 2019 Dec 18. doi: 10.1111/apa.15054. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/31854020

Relationship satisfaction, communication self-efficacy, and chronic fatigue syndrome-related fatigue

Abstract:

RATIONALE: Relationship dissatisfaction has been linked with worse health outcomes in many patient populations, though the mechanism(s) underlying this effect are unclear. Among patients with chronic fatigue syndrome (CFS) and their partners, there is evidence for a bi-directional association between poorer relationship satisfaction and the severity of CFS-related fatigue.

OBJECTIVE: Here, we hypothesized that relationship dissatisfaction negatively impacts fatigue severity through greater depression and less patient satisfaction about communication about symptoms to partners.

METHOD: Baseline data were drawn from diagnosed CFS patients (N = 150) participating in a trial testing the efficacy of a stress management intervention. Data derived from fatigue severity (Fatigue Symptom Index, FSI), depression (Center for Epidemiologic Survey-Depression, CES-D), relationship quality (Dyadic Adjustment Scale, DAS) and communication satisfaction (Patient Symptom Disclosure Satisfaction, PSDS) questionnaires were used for bootstrapped indirect effect analyses using parallel mediation structural equation modeling in Mplus (v8). Age and BMI were entered as covariates.

RESULTS: Greater relationship satisfaction predicted greater communication satisfaction (p < 0.01) and lower CES-D scores (p < 0.01), which in turn were each significantly related to greater fatigue severity (p < 0.05). Tests of the indirect paths indicated that relationship satisfaction had a significant effect on fatigue severity through both constructs, but primarily via depression. There was no direct association between relationship satisfaction and fatigue severity after the intermediate variables (depression, communication satisfaction) were included in the model.

CONCLUSION: Results highlight the importance of considering depression and communication-related factors when examining the effects of relationship satisfaction on CFS symptoms such as fatigue. Further mechanism-based, longitudinal research might identify relationship-related mediating variables that can be targeted therapeutically.

Source: Milrad SF, Hall DL, Jutagir DR, Lattie EG, Czaja SJ, Perdomo DM, Ironson G, Doss BD, Mendez A, Fletcher MA, Klimas N, Antoni MH. Relationship satisfaction, communication self-efficacy, and chronic fatigue syndrome-related fatigue. Soc Sci Med. 2019 Jul 16;237:112392. doi: 10.1016/j.socscimed.2019.112392. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/31377502

VIDEO: Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

This video on the diagnosis and management of myalgic encephalomyelitis and chronic fatigue syndrome is part of the Unrest Continuing Education module, made available through the American Medical Women’s Association and Indiana University School of Medicine, and in partnership with #MEAction. US medical providers can visit: https://www.unrest.film/cme to register to watch Unrest online for free and receive Continuing Education credit.

A transcript has just been made by an anonymous source

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Unraveling the Molecular Determinants of Manual Therapy: An Approach to Integrative Therapeutics for the Treatment of Fibromyalgia and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Abstract:

Application of protocols without parameter standardization and appropriate controls has led manual therapy (MT) and other physiotherapy-based approaches to controversial outcomes. Thus, there is an urgency to carefully define standard protocols that elevate physiotherapy treatments to rigorous scientific demands. One way in which this can be achieved is by studying gene expression and physiological changes that associate to particular, parameter-controlled, treatments in animal models, and translating this knowledge to properly designed, objective, quantitatively-monitored clinical trials (CTs).

Here, we propose a molecular physiotherapy approach (MPTA) requiring multidisciplinary teams, to uncover the scientific reasons behind the numerous reports that historically attribute health benefits to MT-treatments. The review focuses on the identification of MT-induced physiological and molecular responses that could be used for the treatment of fibromyalgia (FM) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

The systemic effects associated to mechanical-load responses are considered of particular relevance, as they suggest that defined, low-pain anatomic areas can be selected for MT treatment and yet yield overall benefits, an aspect that might result in it being essential to treat FM. Additionally, MT can provide muscle conditioning to sedentary patients without demanding strenuous physical effort, which is particularly detrimental for CFS/ME patients, placing MT as a real option for integrative medicine programs to improve FM and CFS/ME.

Source: Espejo JA, García-Escudero M, Oltra E. Unraveling the Molecular Determinants of Manual Therapy: An Approach to Integrative Therapeutics for the Treatment of Fibromyalgia and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Int J Mol Sci. 2018 Sep 9;19(9). pii: E2673. doi: 10.3390/ijms19092673. http://www.mdpi.com/1422-0067/19/9/2673 (Full article)

‘It’s like being a slave to your own body in a way’: a qualitative study of adolescents with chronic fatigue syndrome

Abstract:

BACKGROUND: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a relatively common disabling illness in adolescents that may limit participation in daily life.

AIM: This study explored interactions between the illness experiences of adolescents with CFS/ME, their occupational lives and expectations for the future.

METHODS: Seven adolescents with CFS/ME were interviewed. The interviews were analyzed using thematic analysis.

RESULTS: Three themes were developed. ‘Being ruled by an unfamiliar and inexplicable body’, which illustrated that altered and strange bodies seemed to separate and disrupt the participants from their former occupational lives. ‘On the sideline of life with peers’, which demonstrated that the informants spent time at home, doing undemanding activities instead of participating in activities with peers. ‘A coherent connection between present and future life’, which was reflected by how the participants eventually accepted their situation and rebuilt a meaningful occupational life and value of self.

CONCLUSION: CFS/ME made the body unfamiliar and disconnected informants from participating in their usual daily occupations. A coherent interaction between body, occupational life and social self was achieved by taking their new body into account and adjusting their occupations accordingly. This practice enabled the participants to hope for a better future life.

Source: Njølstad BW, Mengshoel AM, Sveen U. ‘It’s like being a slave to your own body in a way’: a qualitative study of adolescents with chronic fatigue syndrome. Scand J Occup Ther. 2018 Apr 1:1-10. doi: 10.1080/11038128.2018.1455895. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/29607759

Effectiveness of a group-based self-management program for people with chronic fatigue syndrome: a randomized controlled trial

Abstract:

OBJECTIVE: To evaluate the effectiveness of a group-based self-management program for people with chronic fatigue syndrome.

DESIGN: A randomized controlled trial.

SETTING: Four mid-sized towns in southern Norway and two suburbs of Oslo.

SUBJECTS: A total of 137 adults with chronic fatigue syndrome.

INTERVENTION: A self-management program including eight biweekly meetings of 2.5 hours duration. The control group received usual care.

MAIN MEASURES: Primary outcome measure: Medical Outcomes Study-Short Form-36 physical functioning subscale.

SECONDARY OUTCOME MEASURES: Fatigue severity scale, self-efficacy scale, physical and mental component summary of the Short Form-36, and the illness cognition questionnaire (acceptance subscale). Assessments were performed at baseline, and at six-month and one-year follow-ups.

RESULTS: At the six-month follow-up, a significant difference between the two groups was found concerning fatigue severity ( p = 0.039) in favor of the control group, and concerning self-efficacy in favor of the intervention group ( p = 0.039). These significant differences were not sustained at the one-year follow-up. No significant differences were found between the groups concerning physical functioning, acceptance, and health status at any of the measure points. The drop-out rate was 13.9% and the median number of sessions attended was seven (out of eight).

CONCLUSIONS: The evaluated self-management program did not have any sustained effect, as compared with receiving usual care.

Source: Pinxsterhuis I, Sandvik L, Strand EB, Bautz-Holter E, Sveen U. Effectiveness of a group-based self-management program for people with chronic fatigue syndrome: a randomized controlled trial. Clin Rehabil. 2017 Jan;31(1):93-103. doi: 10.1177/0269215515621362. Epub 2016 Jul 11. https://www.ncbi.nlm.nih.gov/pubmed/26672998

Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians

Abstract:

This review was written from the viewpoint of the treating clinician to educate health care professionals and the public about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It includes: the clinical definition of ME/CFS with emphasis on how to diagnose ME/CFS; the etiology, pathophysiology, management approach, long-term prognosis and economic cost of ME/CFS. After reading this review, you will be better able to diagnose and treat your patients with ME/CFS using the tools and information provided.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, chronic medical condition characterized by symptom clusters that include: pathological fatigue and malaise that is worse after exertion, cognitive dysfunction, immune dysfunction, unrefreshing sleep, pain, autonomic dysfunction, neuroendocrine and immune symptoms. ME/CFS is common, often severely disabling and costly. The Institute of Medicine (IOM) reviewed the ME/CFS literature and estimates that between 836,000 and 2.5 million Americans have ME/CFS at a cost of between 17 and 24 billion dollars annually in the US. The IOM suggested a new name for ME/CFS and called it Systemic Exertion Intolerance Disease (SEID). SEID’s diagnostic criteria are less specific and do not exclude psychiatric disorders in the criteria.

The 2010 Canadian Community Health Survey discovered that 29% of patients with ME/CFS had unmet health care needs and 20% had food insecurity–lack of access to sufficient healthy foods. ME/CFS can be severely disabling and cause patients to be bedridden. Yet most patients (80%) struggle to get a diagnosis because doctors have not been taught how to diagnose or treat ME/CFS in medical schools or in their post-graduate educational training. Consequently, the patients with ME/CFS suffer.

They are not diagnosed with ME/CFS and are not treated accordingly. Instead of compassionate care from their doctors, they are often ridiculed by the very people from whom they seek help.

The precise etiology of ME/CFS remains unknown, but recent advances and research discoveries are beginning to shed light on the enigma of this disease including the following contributors: infectious, genetic, immune, cognitive including sleep, metabolic and biochemical abnormalities.

Management of patients with ME/CFS is supportive symptomatic treatment with a patient centered care approach that begins with the symptoms that are most troublesome for the patient. Pacing of activities with strategic rest periods is, in our opinion, the most important coping strategy patients can learn to better manage their illness and stop their post-exertional fatigue and malaise. Pacing allows patients to regain the ability to plan activities and begin to make slow incremental improvements in functionality.

Source: Bested AC, Marshall LM. Review of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an evidence-based approach to diagnosis and management by clinicians. Rev Environ Health. 2015;30(4):223-49. doi: 10.1515/reveh-2015-0026. https://www.ncbi.nlm.nih.gov/pubmed/26613325

Activity Pacing Self-Management in Chronic Fatigue Syndrome: A Randomized Controlled Trial

Abstract:

OBJECTIVE: To evaluate the effectiveness of an activity pacing self-management (APSM) intervention in improving performance of daily life activities in women with chronic fatigue syndrome (CFS).

METHOD: A total of 33 women with CFS (age 41.1±11.2 yr) were randomly allocated to APSM (experimental group; n=16) or relaxation (control group; n=17). Main outcome measures included the Canadian Occupational Performance Measure (COPM; primary) and Checklist Individual Strength (CIS).

RESULTS: COPM scores changed significantly over time in both groups (p=.03). The change in Satisfaction scores showed a significant difference in favor only of APSM (effect size=0.74 [0.11, 1.4]). CIS scores decreased significantly in the experimental group only (p<.01).

CONCLUSION: APSM was found to be feasible and effective in optimizing participation in desired daily life activities in women with CFS. Replication in a larger sample with long-term follow-up is required.

Source: Kos D, van Eupen I, Meirte J, Van Cauwenbergh D, Moorkens G, Meeus M, Nijs J. Activity Pacing Self-Management in Chronic Fatigue Syndrome: A Randomized Controlled Trial. Am J Occup Ther. 2015 Sep-Oct;69(5):6905290020. doi: 10.5014/ajot.2015.016287. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4564796/ (Full article)