A content analysis of chronic fatigue syndrome and myalgic encephalomyelitis in the news from 1987 to 2013.
Siegel, Zachary A, Brown, Abigail, Devendorf, Andrew et al. · Chronic illness · 2018 · DOI
Quick Summary
Researchers examined 214 newspaper articles about ME/CFS published between 1987 and 2013 to see how the illness was described to the public. They found that newspapers often got the facts wrong or incomplete—nearly 1 in 5 headlines used the wrong name for the illness, most articles didn't explain how to diagnose it, and half didn't mention any treatments. This study shows that people reading the news may have received confusing or incomplete information about ME/CFS.
Why It Matters
Media coverage shapes public understanding and attitudes toward ME/CFS, influencing patient experiences, healthcare provider knowledge, and research funding priorities. This study documents systematic inaccuracies and omissions in how newspapers portrayed the illness, highlighting the need for improved science communication and media literacy around ME/CFS. Understanding these communication gaps helps advocates, researchers, and clinicians develop better strategies for public education.
Observed Findings
64.5% of articles portrayed ME/CFS as organic in etiology, while the framing in remaining articles was unclear or implied psychogenic origins.
56.1% of articles contained no mention of case definitions or diagnostic criteria.
50.9% of articles did not mention any form of treatment.
19.4% of article headlines mislabeled the name of the illness (using incorrect terminology or alternative names inconsistently).
Depression was the most commonly mentioned comorbidity, appearing in 22.9% of articles; 55.6% mentioned no prevalence rates.
Inferred Conclusions
American newspapers communicated mixed and inconsistent messages about ME/CFS regarding disease nomenclature, etiology, diagnostic criteria, and treatment options.
Media coverage may have contributed to public confusion and misunderstanding of ME/CFS as a distinct medical condition.
Significant gaps in media reporting—particularly regarding diagnostic criteria and treatment—may have limited public and healthcare provider awareness of how to identify and manage the illness.
Remaining Questions
How did media representation of ME/CFS change after 2013, and has coverage improved with increased awareness of the illness?
Did the mixed media messaging correlate with patterns in clinical diagnosis rates, patient care quality, or research funding during this period?
What This Study Does Not Prove
This study does not prove that inaccurate media coverage directly caused reduced research funding, delayed diagnoses, or negative health outcomes—it only demonstrates that the coverage was often incomplete or misleading. The analysis is limited to American newspapers and does not assess other media types (television, online, social media) or international coverage. The codebook's validity in capturing all relevant dimensions of coverage was not independently validated.
How did print media coverage compare to television, online news, and social media representations of ME/CFS during this same timeframe?
What is the relationship between specific types of media inaccuracy (nomenclature errors vs. etiology misrepresentation) and patients' health outcomes or healthcare-seeking behaviors?