ReviewHealthcare (Basel, Switzerland)2021
Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected.
Review in Healthcare (Basel, Switzerland), 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
26 citing papers in PubMed, 1 synthesis or guideline pooled it, 35 citations in OpenAlex.
- Exploring the influence of long COVID upon self-identity: a systematic literature review.Archives of public health = Archives belges de sante publique · 2026Pooled it
- ME/CFS and the emotional toll of persistent disbelief: from epistemic to affective injustice.Medicine, health care, and philosophy · 2026Article
- [Transdisciplinary Expert Statement: care guide for people severely affected by ME/CFS in home-based care].Wiener medizinische Wochenschrift (1946) · 2026Article
- Guidance on Home-Based Care for People with Severe ME/CFS: A Transdisciplinary Expert Statement.Wiener medizinische Wochenschrift (1946) · 2026Article
- Re-visiting professional ethics in psychotherapy: reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis/chronic fatigue syndrome and 'medically unexplained symptoms'.Journal of medical ethics · 2026Article
- Using a Large Language Model to Support Thematic Analysis of Patient Experiences in Chronic Illness Management: Comparative Qualitative Study.Journal of medical Internet research · 2026Article
- Chronic fatigue syndrome in nursing practice: a concept analysis.BMC nursing · 2026Article
- An Overview of Severe Myalgic Encephalomyelitis.Journal of clinical medicine · 2026Review
- Investigating the ME/CFS experience through qualitative analysis of memorial entries.PloS one · 2026Article
- [Comorbidity of chronic pain and fatigue : Common mechanisms, common treatment steps?]Schmerz (Berlin, Germany) · 2025Review
- Psychosocial Nursing Diagnoses of Individuals With Myalgic Encephalomyelitis-Chronic Fatigue Syndrome: A Descriptive Study.Nursing open · 2025Article
- The microbiota-gut-brain axis in myalgic encephalomyelitis/chronic fatigue syndrome: a narrative review of an emerging field.European journal of translational myology · 2025Article
- Will psychology ever 'join hands' with disability studies? Opportunities and challenges in working towards structurally competent and disability-affirmative psychotherapy for energy limiting conditions.Medical humanities · 2025Article
- Perceived discrimination in fatigue: a qualitative interview study in the SOMA.SOC project.Frontiers in sociology · 2025Article
- What is the occupational impact of myalgic encephalomyelitis/chronic fatigue syndrome for adults living in Australia?The British journal of occupational therapy · 2024Article
- Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Impact on Quality of Life (QoL) of Persons with ME/CFS.Medicina (Kaunas, Lithuania) · 2024Article
- The German Multicenter Registry for ME/CFS (MECFS-R).Journal of clinical medicine · 2024Article
- Article
- Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity.Frontiers in immunology · 2024Article
- Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome.International journal of qualitative studies on health and well-being · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
People who are severely and very severely affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) experience profound suffering. This suffering comes from the myriad of losses these patients experience, the grief that comes from these losses, the ongoing stigma that is often experienced as a person with a poorly understood, controversial chronic illness, and the trauma that can result from how other people and the health care community respond to this illness. This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness. Using a systems approach, this phase framework illustrates the effects of suffering on the patient and can be utilized to help the clinician, patient, family, and caregivers understand and respond to the patient's experiences. We highlight the constructs of severity, uncertainty, ambiguity, and chronicity and their role in the suffering endured by patients with ME/CFS. A composite case example is used to illustrate the lives of severely and very severely affected patients. Recommendations for health care providers treating patients with ME/CFS are given and underscore the importance of providers understanding the intense suffering that the severely and very severely affected patients experience.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.