Frost, Jeana, Okun, Sally, Vaughan, Timothy et al. · Journal of medical Internet research · 2011 · DOI
This study looked at how patients can help doctors understand whether existing medicines work for conditions they weren't originally designed to treat. Researchers analyzed information from an online patient community where people with conditions like ME/CFS shared their experiences with two medicines: amitriptyline and modafinil. The study found that most patients were using these drugs for purposes other than what they were officially approved for, and many reported the drugs helped them.
For ME/CFS patients, this study is important because it shows how patient experiences shared online can provide real-world evidence about whether existing medications help with symptoms, especially when formal clinical trials are rare or unfunded. The research validates that patient-reported outcomes from communities like PatientsLikeMe can identify which treatments warrant further investigation through traditional research methods.
This study does not prove that amitriptyline or modafinil are effective treatments for ME/CFS or any other condition—it only documents what patients reported about their experiences. The lack of control groups, blinding, or standardized outcome measures means we cannot determine whether improvements were due to the drug, placebo effect, natural disease course, or other factors. Correlation between taking a drug and reporting improvement does not establish causation.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
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