ReviewThe patient2026
Measures of Overall Illness Severity and Burden for ME/CFS: A Scoping Review.
Review in The patient, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
BACKGROUND AND
objectivesConsensus has not been established on measures of illness severity and burden for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), which is characterized by a wide range of symptoms including post-exertional malaise, unrefreshing sleep, and cognitive impairment. A scoping review was conducted to systematically evaluate the measurement of illness severity and burden in individuals with ME/CFS.
methodsA literature search was conducted following PRISMA-ScR guidelines across five academic databases and one patient-organization-led website (with no restrictions on publication date; restricted to English language studies, and excluding review articles). Records were imported into Covidence, a systematic and scoping review data management tool, with studies retained if they evaluated an ME/CFS population and explicitly measured illness severity or illness burden. Information from each source was extracted and relevant measures were evaluated.
resultsFrom the reviewed literature, 190 full-text articles met the final inclusion criteria and were retained for analysis. The most frequently utilized tools for evaluating illness severity and burden in individuals with ME/CFS were the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) and the Sickness Impact Profile (SIP). Additional prominent instruments identified across the literature include disease-specific measures such as the DePaul Symptom Questionnaire (DSQ) and generic health-related quality of life indices like the EuroQoL 5-Dimension (EQ-5D-5L).
conclusionsSignificant discrepancies persist in how illness severity and illness burden are operationalized in ME/CFS research. The reliance on generic instruments often obscures core symptom domains like post-exertional malaise (PEM), while inconsistent standards limit cross-comparability. Establishing standardized, disease-specifici illness metrics is critical to accurately capturing the true burden of illness and advancing rigorous clinical research.
Identifiers
42879116What 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.