Afari, N, Eisenberg, DM, Herrell, R et al. · Integrative medicine : integrating conventional and alternative medicine · 2000 · DOI
This study looked at how often people with ME/CFS use alternative treatments compared to their identical twins who don't have the illness. Researchers surveyed 63 twin pairs and found that 91% of people with ME/CFS had tried at least one alternative therapy (such as herbs, vitamins, massage, or meditation), compared to 71% of their healthy twins. While many people found these treatments helpful, most didn't tell their doctors they were using them.
This study highlights a significant gap in communication between ME/CFS patients and their physicians regarding complementary medicine use. Understanding the prevalence and perceived effectiveness of alternative treatments may inform more comprehensive, integrated care approaches and help clinicians provide better-informed guidance to patients seeking symptom management options.
This study does not demonstrate that any alternative treatment is actually effective for ME/CFS—it only documents what patients report using and perceiving as helpful. The cross-sectional design cannot establish whether alternative medicine use causes symptom improvement or whether perceived benefits reflect true clinical benefit versus placebo effect. It also does not explain why CFS patients use these treatments more frequently than their non-affected twins.
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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