E2 ModeratePreliminaryPEM not requiredCross-SectionalPeer-reviewedReviewed
Standard · 3 min
Use of alternative treatments by chronic fatigue syndrome discordant twins.
Afari, N, Eisenberg, DM, Herrell, R et al. · Integrative medicine : integrating conventional and alternative medicine · 2000 · DOI
Quick Summary
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.
Why It Matters
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.
Observed Findings
91% of CFS-affected twins had used at least one alternative treatment compared to 71% of non-CFS twins
CFS twins showed significantly higher usage rates of homeopathy, mega-vitamins, herbal therapies, biofeedback, relaxation/meditation, guided imagery, massage therapy, energy healing, religious healing, and self-help groups
Only 42% of CFS twins with alternative medicine experience discussed this use with their physician, compared to 23% of non-CFS twins
A large proportion of all twins (both CFS and non-CFS) reported finding alternative therapies helpful
Inferred Conclusions
Alternative medicine use is markedly more prevalent in individuals with CFS compared to unaffected twins, suggesting heightened treatment-seeking behavior in response to illness burden
There is substantial underreporting of alternative medicine use to physicians, particularly in CFS populations, creating potential safety and drug-interaction risks
Future research should evaluate whether alternative therapies provide genuine clinical benefit in ME/CFS management
Remaining Questions
What mechanisms might explain why CFS-affected twins use alternative treatments at higher rates than their non-affected co-twins?
Do perceived benefits of alternative treatments reflect genuine clinical improvement, placebo effect, or natural disease fluctuation?
What This Study Does Not Prove
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.
Tags
Symptom:Fatigue
Method Flag:Small SampleExploratory OnlyWeak Case Definition
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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