Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document

Goudsmit, Ellen; Nijs, Jo; Jason, Leonard A.; Wallman, Karen

doi:10.3109/09638288.2011.635746

Cited by 106 publications

(102 citation statements)

References 73 publications

(144 reference statements)

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“…The most commonly experienced symptoms are fatigue, pain, and cognitive problems (Anderson, Jason, Hlavaty, Porter, & Cudia, 2012;Goudsmit, Nijs, Jason, & Wallman, 2012). People with CFS may experience restricted performance in a variety of life domains, including employment, education, personal care, home care, leisure, and social relationships, although their symptoms are not always visible to others in their environment (Anderson et al, 2012;Taylor et al, 2010).…”

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confidence: 99%

“…The rationale for activity pacing can be found in several strategies observed in people with CFS: reduced activity levels resulting from and in anticipation of fatigue (Nijs et al, 2011;Vercoulen et al, 1997), lowered activity peaks followed by very long rest periods (van der Werf, Prins, Vercoulen, van der Meer, & Bleijenberg, 2000), and ability to perform short periods of light to moderate activity without exacerbating symptoms (Clapp et al, 1999;Cook et al, 2005). Several randomized controlled trials (RCTs) have shown positive effects of treatment programs based on activity pacing for people with CFS (Cox, 2002;Crawley et al, 2013;Goudsmit et al, 2012;Jason et al, 2013;Pemberton & Cox, 2014;Taylor, 2004). The findings of these studies are in line with those of a pilot study in which several of the current authors participated (Nijs et al, 2009).…”

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confidence: 99%

“…Activity pacing, a strategy to encourage people with CFS to be active within their physical and mental limits, is related to the energy envelope theory in that effort is made to maintain expended energy within the "envelope" of perceived available energy levels by moderating activity and conserving energy (Goudsmit & Howes, 2008;Goudsmit et al, 2012;Jason, Brown, & Brown, 2013). The rationale for activity pacing can be found in several strategies observed in people with CFS: reduced activity levels resulting from and in anticipation of fatigue (Nijs et al, 2011;Vercoulen et al, 1997), lowered activity peaks followed by very long rest periods (van der Werf, Prins, Vercoulen, van der Meer, & Bleijenberg, 2000), and ability to perform short periods of light to moderate activity without exacerbating symptoms (Clapp et al, 1999;Cook et al, 2005).…”

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confidence: 99%

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

Kos

Eupen

Meirte

et al. 2015

The American Journal of Occupational Therapy

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OBJECTIVE. The objective of this study was 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.

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

Kos

Eupen

Meirte

et al. 2015

The American Journal of Occupational Therapy

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“…Målsetningen er at man aldri skal overskride den individuelle tålegrensen (91) . Pacing hjelper pasienter med CFS/ME å begrense anstrengelsesutløste symptomforverringer og er derfor godt egnet for pasienter som holder seg på eller naer sitt maksimale funksjonsnivå (94) .…”

Section: Aktivitets Og Energireguleringunclassified

“…Både EET og pacing retter seg mer direkte inn mot forebygging av anstrengelsesutløste symptomer og ser ut til å kunne bidra til stabilisering av sykdommen, økt funksjon og forebygging av symptomforverringer (94)(95)(96) . Begge tilnaermingene vil kunne egne seg som del av et individualisert, tverrfaglig mestringsopplegg-eller et rehabiliteringsprogram.…”

Section: Aktivitets Og Energireguleringunclassified

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Egeland¹,

Angelsen²,

Haug³

et al. 2015

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Forfattere:Avdeling rehabilitering og sjeldne tilstander Trykk og layout: Andvord Grafisk as forord Helsedirektoratet har «følge med ansvar» for å vurdere utvikling av tjenestetilbud og om dette står i forhold til pasientgruppenes behov.På bakgrunn av erfaringer fra kontakter med pasienter, pårørende og fagpersoner er direktoratet gjort kjent med at barn, unge og voksne med CFS/ME og deres pårørende møter store utfordringer som i for liten grad ivaretas av tjenesteapparatet.Helsedirektoratets mål med denne veilederen er å bidra til faglig forsvarlighet, god kvalitet på tjenestene og tilnaermet likhet i tilbudet uansett hvor man bor som pasient med CFS/ME.Å gi helsetjenester til brukere som ikke har en klar og entydig anerkjent årsak til sin sykdom, stiller store krav til faglig kvalitet, profesjonalitet og utøvelse av tjenestetilbudet. Tidlig og riktig diagnose er viktig i et pasientforløp.Mange pasienter oppgir at de får et bedre liv når de har fått korrekt diagnose, aksepterer sykdommen og laerer seg gode mestringsstrategier for de utfordringer CFS/ME kan gi.Veilederen er utarbeidet slik at den favner et bredt felt av temaer.Veilederen bygger på dagens kunnskap og erfaring, de ordninger som er etablert i dag og gjeldende rettsregler. Det er lagt vekt på at dette først og fremst skal vaere en faglig veileder for helsepersonell.Veilederen vil bli revidert i takt med ny kunnskap.

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Engaging stakeholders to refine an activity pacing framework for chronic pain/fatigue: A nominal group technique

Antcliff

Keenan

Keeley

et al. 2019

Musculoskeletal Care

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ObjectivesDue to the current absence of a standardized guide for activity pacing, the concept of pacing is interpreted in various ways by healthcare professionals, patients and researchers. Consequently, the effects of pacing across different conditions are unclear. The present study aimed to undertake the second stage in the development of an activity pacing framework for chronic pain/fatigue.MethodsThe newly developed activity pacing framework was refined using a consensus method. A nominal group technique (NGT) was selected to engage stakeholders to reach agreement on the top 10 priorities for inclusion in the framework and accompanying appendices. Participants included patients with diagnoses of chronic pain/fatigue and healthcare professionals working in fields of chronic pain/fatigue.ResultsTen participants were recruited via purposive sampling: four patients, two physiotherapists, two occupational therapists and two psychological wellbeing practitioners. The top priorities for the pacing framework included a clear definition of pacing, and stating the aims and context of pacing. The appendices were refined as a teaching guide, including priorities of detailing the stages of pacing, the overactivity–underactivity cycle/pain cycle and goal setting.ConclusionsIncorporating a diverse panel of stakeholders was an effective and inclusive method to refine the activity pacing framework. The framework has been purposefully designed for wider use across patients with chronic pain/fatigue and by various healthcare professionals. The framework provides a comprehensive definition, background and manual for healthcare professionals to instruct activity pacing. Further study will test the clinical usability of the framework, to enable the standardization of activity pacing in future investigations.

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Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document

Abstract: Pacing offers practitioners an additional therapeutic option which is acceptable to the majority of patients and can reduce the severity of the exertion-related symptoms of ME/CFS.

Cited by 106 publications

References 73 publications

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

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

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Engaging stakeholders to refine an activity pacing framework for chronic pain/fatigue: A nominal group technique

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