Baxter, Helen · Healthcare (Basel, Switzerland) · 2022 · DOI
Most ME/CFS research has only included patients well enough to visit clinics, which means the most severely affected patients—those who are housebound or bedbound—have been left out. This study showed that very severely affected patients can participate in research if researchers make practical adjustments, like allowing phone or text responses instead of requiring in-person visits. By reaching out directly to these patients, researchers were able to gather their important experiences and insights.
This research is critical because the most severely affected ME/CFS patients have been systematically excluded from studies, meaning their needs and experiences are largely invisible in the medical literature. By demonstrating practical methods to include these patients, the study could fundamentally change how ME/CFS research is conducted and ensure that treatments and interventions are developed with input from the entire patient population. This represents an important step toward equitable research that doesn't inadvertently exclude the most vulnerable patients.
This study does not establish the effectiveness of any particular treatment or intervention for ME/CFS. It is a methods paper that demonstrates feasibility of inclusive recruitment approaches, not a clinical trial. The study does not prove that very severely affected patients' experiences differ from ambulant patients in specific ways, nor does it establish prevalence rates of any particular complication like the need for tube feeding.
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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