Designing Energy-Respectful Communication in Healthcare for People with ME/CFS

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, often disabling illness characterized by severe energy limitations, cognitive impairment, and post-exertional malaise, in which even minimal physical or mental effort can significantly worsen symptoms. While medical research continues to explore diagnostic tools and treatments, many people with ME/CFS face an additional, less visible barrier related to how healthcare communication itself is structured. Standard medical interactions often rely on patients’ ability to recall detailed information, process complex instructions, and advocate consistently for their needs. These assumptions can unintentionally exclude individuals living with ME/CFS. Healthcare systems often rely on high-energy, memory-intensive communication, but small, intentional redesigns of how providers communicate can significantly improve access, care quality, and patient well-being. As a student of communication and psychology, learning about ME/CFS revealed how profoundly healthcare access is shaped not only by medical knowledge, but by the design of everyday interactions, informing a focus on communication design as a practical and scalable way to improve care. Importantly, addressing these barriers does not require asking patients to adapt to existing systems, but instead invites healthcare providers to redesign communication practices to better match patients’ available energy.

Healthcare systems are largely designed around the assumption that patients can describe their symptoms clearly, remember detailed medical histories, and process complex information during appointments. For people living with ME/CFS, these expectations can be unrealistic and exhausting. Many patients report significant difficulties with attention and memory in everyday life, often described as “brain fog,” which can make it difficult to recall information, follow lengthy conversations, or respond quickly to questions (Cockshell and Mathias). However, communication barriers for people with ME/CFS extend beyond memory alone. Visual and auditory processing challenges, sensory sensitivities to light, noise, or scent, and orthostatic intolerance can all make traditional clinical environments overwhelming. Long appointments, rapid exchanges, and dense medical instructions can drain limited energy and trigger post-exertional malaise, sometimes worsening symptoms for days afterward. As a result, important details may be missed, misunderstandings can occur, and patients may leave appointments feeling overwhelmed or unheard, discouraging them from seeking ongoing care.

Addressing these barriers requires rethinking how communication itself is designed within healthcare settings. Designing energy-respectful communication means recognizing that communication itself demands cognitive and physical effort. Importantly, energy-respectful care is not one-size-fits-all. While shorter appointments may help some patients conserve energy, others, particularly those with more severe illness, may need additional time, slower pacing, or built-in breaks to communicate effectively. Emphasizing pacing over speed allows care to be tailored to individual needs rather than assuming efficiency always improves access.

Research in health communication shows that how information is delivered affects patient understanding, trust, and health outcomes, not just satisfaction (Street et al.). Applying these principles to ME/CFS care involves reducing cognitive load and conserving limited energy through intentional, patient-centered adjustments. Practical strategies include pre-visit written symptom summaries, asynchronous communication such as secure messaging, and flexible appointment structures with clear agendas. Telehealth and home-based care options are especially critical, as travel to and from appointments is often one of the largest energy drains for people with ME/CFS, particularly for those who are housebound or bedbound. These approaches help redistribute communicative effort away from real-time verbal exchanges and toward formats that patients can engage with at their own pace. Providing simplified written instructions after visits can further support patients who experience brain fog or mental fatigue, which can impair attention and memory (Boksem and Lorist; Epstein and Street; Sweller).

ME/CFS challenges healthcare systems to reconsider not only what care is provided, but how it is delivered. When communication demands exceed patients’ available energy, access to care itself becomes a barrier. By adopting energy-respectful communication practices that are flexible, individualized, and attentive to the full range of challenges faced by people with ME/CFS, healthcare providers can create interactions that are more humane, effective, and inclusive. Designing communication with energy limitations in mind offers a practical and scalable path toward more accessible, patient-centered care.

Works Cited

Bateman Horne Center. ME/CFS Education and Management Resources. Bateman Horne Center.
https://batemanhornecenter.org/education/me-cfs/

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Centers for Disease Control and Prevention. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). CDC.
https://www.cdc.gov/me-cfs/index.html

Cockshell, Susan J., and Jane L. Mathias. “Cognitive Functioning in People with Chronic Fatigue Syndrome: A Comparison between Subjective and Objective Measures.” Neuropsychology, vol. 28, no. 3, 2014, pp. 394–405.
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Epstein, Ronald M., and Richard L. Street Jr. Patient-Centered Communication in Cancer Care: Promoting Healing and Reducing Suffering. National Cancer Institute, 2007.

Institute of Medicine. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. National Academies Press, 2015.
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Street, Richard L., Jr., et al. “How Does Communication Heal? Pathways Linking Clinician–Patient Communication to Health Outcomes.” Patient Education and Counseling, vol. 74, no. 3, 2009, pp. 295–301.
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Sweller, John. “Cognitive Load Theory.” Psychology of Learning and Motivation, vol. 55, 2011, pp. 37–76.