ArticleDiagnostics (Basel, Switzerland)2019
Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): A Patient-Driven Survey.
Article in Diagnostics (Basel, Switzerland), 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 36 papers, 4 of them syntheses that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
36 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Potential application of brain-gut axis-based treatments in Long COVID and ME/CFS: a case-based systematic review.Journal of translational medicine · 2026Pooled it
- Effectiveness and tolerance of exercise interventions for long COVID: a systematic review of randomised controlled trials.BMJ open · 2025Pooled it
- Recent research in myalgic encephalomyelitis/chronic fatigue syndrome: an evidence map.Health technology assessment (Winchester, England) · 2025Pooled it
- The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering post-exertional malaise: a systematic review and narrative synthesis.Journal of translational medicine · 2021Pooled it
- Rationale and Design of RECOVER-ENERGIZE: A Platform Clinical Trial of Interventions for Exercise Intolerance With and Without Post-exertional Malaise in Long COVID.medRxiv : the preprint server for health sciences · 2026Article
- Cardiopulmonary Exercise Testing Reveals Functional Limitations and Work Disability in Severe Post-COVID-19 and ME/CFS Patients.Sports medicine - open · 2026Article
- PTPRN2 hypomethylation and PHB2-associated miR-153-3p maturation define dual epigenetic features linked to symptom variability in Myalgic encephalomyelitis.Journal of translational medicine · 2026Article
- Algorithm dependence of patient phenotypes in Long COVID: a patient-led, multi-method clustering of 6031 patients using 162 self-reported symptoms.Oxford open immunology · 2026Article
- Overcoming barriers in myalgic encephalomyelitis/chronic fatigue syndrome research: the CureME participatory model.Frontiers in human neuroscience · 2026Article
- Review
- Inactivation of ATG13 stimulates chronic demyelinating pathologies in muscle-serving nerves and spinal cord.Immunologic research · 2025Article
- Post-exertional malaise in Long COVID: subjective reporting versus objective assessment.Frontiers in neurology · 2025Article
- The emerging role of exosomal LncRNAs in chronic fatigue syndrome: from intercellular communication to disease biomarkers.Frontiers in molecular biosciences · 2025Review
- Association Between Chronic Pain and Fatigue Severity with Weather and Air Pollution Among Females with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).International journal of environmental research and public health · 2024Article
- Three-Month Follow-Up of the Post-COVID Syndrome after Admission to a Specialised Post-COVID Centre-A Prospective Study Focusing on Mental Health with Patient Reported Outcome Measures (PROMs).International journal of environmental research and public health · 2024Article
- Assessing Functional Capacity in Myalgic Encephalopathy/Chronic Fatigue Syndrome: A Patient-Informed Questionnaire.Journal of clinical medicine · 2024Article
- Physical Activity and Fatigue Symptoms: Neurotypical Adults and People with Chronic Multisymptom Illnesses.Current topics in behavioral neurosciences · 2024Article
- Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome: an exploratory study.BMJ neurology open · 2024Article
- A scoping review of 'Pacing' for management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): lessons learned for the long COVID pandemic.Journal of translational medicine · 2023Article
- Observational Study of Repeat Immunoadsorption (RIA) in Post-COVID ME/CFS Patients with Elevated ß2-Adrenergic Receptor Autoantibodies-An Interim Report.Journal of clinical medicine · 2023Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Considerable controversy has existed with efforts to assess post-exertional malaise (PEM), which is one of the defining features of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). While a number of self-report questionnaires have been developed to assess this symptom, none have been comprehensive, and a recent federal government report has recommended the development of a new PEM measure. The current study involved a community-based participatory research process in an effort to develop a comprehensive PEM instrument, with critical patient input shaping the item selection and overall design of the tool. A survey was ultimately developed and was subsequently completed by 1534 members of the patient community. The findings of this survey suggest that there are key domains of this symptom, including triggers, symptom onset, and duration, which have often not been comprehensively assessed in a previous PEM instrument. This study indicates that there are unique benefits that can be derived from patients collaborating with researchers in the measurement of key symptoms defining ME and CFS.
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