Pre-pandemic activity on a myalgic encephalomyelitis/chronic fatigue syndrome support forum is highly associated with later activity on a long COVID support forum for a variety of reasons: A mixed methods study. — CFSMEATLAS
Pre-pandemic activity on a myalgic encephalomyelitis/chronic fatigue syndrome support forum is highly associated with later activity on a long COVID support forum for a variety of reasons: A mixed methods study.
Meyerson, William U, Hoyle, Rick H · PloS one · 2023 · DOI
Quick Summary
This study found that people with ME/CFS who were active on online support forums before the COVID-19 pandemic were much more likely to later join long COVID support forums than people from other health communities. By examining nearly 7,500 Reddit users, researchers discovered that previous ME/CFS forum activity was the strongest predictor of who would participate in long COVID communities. People shared that they joined both communities to find support from others with similar experiences and because they hoped long COVID's increased public attention might help validate ME/CFS as a real illness.
Why It Matters
This research highlights the substantial overlap between ME/CFS and long COVID populations and validates long-standing concerns from ME/CFS patients about disease recognition and medical legitimacy. The study demonstrates how long COVID's emerging public awareness offers ME/CFS patients hope for validation, while simultaneously revealing the isolation many ME/CFS patients have experienced. Understanding these overlapping communities can help healthcare providers better support both populations and may provide clues about shared disease mechanisms.
Observed Findings
Pre-pandemic ME/CFS forum activity was the strongest predictor of long COVID forum participation among 1,600 forums examined
Participants reported seeking mutual support as a primary reason for joining both communities
Many individuals with ME/CFS expressed hope that long COVID's legitimacy would improve recognition of their own condition
Dual disease identification was common among co-participants in both forums
ME/CFS patients reported feeling they had not been heard or respected in medical and social contexts prior to long COVID emergence
Inferred Conclusions
ME/CFS and long COVID likely share significant clinical and social characteristics that draw affected individuals to seek community in both spaces
The long-suffering experience of ME/CFS patients—feeling unheard and delegitimized—has created receptiveness to long COVID communities as sources of validation
Pre-existing ME/CFS may represent a risk factor for long COVID, and/or SARS-CoV-2 infection may trigger relapses in ME/CFS patients
Long COVID's emerging public recognition offers ME/CFS patients hope for broader disease legitimacy and improved medical understanding
Remaining Questions
What is the actual prevalence of ME/CFS among long COVID patients, and does having pre-existing ME/CFS increase risk of developing long COVID after SARS-CoV-2 infection?
What This Study Does Not Prove
This study demonstrates correlation, not causation—it does not prove that ME/CFS causes long COVID or vice versa, only that the conditions co-occur in some individuals. The observational design cannot establish whether pre-existing ME/CFS is a true risk factor for long COVID, nor can it determine the direction of causality in cases where both conditions are present. Selection bias from studying only online forum users means findings may not represent all ME/CFS or long COVID patients.
Tags
Phenotype:Long COVID Overlap
Method Flag:Weak Case DefinitionNo ControlsExploratory Only
Are the shared symptoms between ME/CFS and long COVID due to common underlying biological mechanisms, or do different mechanisms produce similar clinical presentations?
How has the emergence of long COVID affected clinical recognition, medical care, and patient outcomes for people with pre-existing ME/CFS?
Do findings from online forum communities represent the broader populations of ME/CFS and long COVID patients, or are online support-seekers a distinct subgroup?