2025:  Benjamin Lam

Breaking the Cycle of Restless Restfulness 

ME/CFS is an often misunderstood condition that leaves those who suffer from it trapped  in a paradox of restless restfulness. Patients experience an overwhelming sense of fatigue that  compels them to rest, yet the very act of resting does little to alleviate their symptoms (Rivera).  The condition, first recognized in the 1950s but often dismissed as imagined, has long suffered  from stigma and insufficient research funding (Couzin-Frankel). For decades, the medical  community ignored ME/CFS as a legitimate illness, leaving many patients without proper  diagnosis or care, leading to a bedridden life appearing restful but confined to fatigue. Despite  growing acceptance, its causes are still not fully understood (Arron). The struggle for recognition  and appropriate care hinders the quality of life of patients who must constantly advocate for  themselves. Through increasing public awareness and enacting structural reforms, the lives of  ME/CFS patients can be dramatically transformed on a societal level. 

A crucial aspect of improving the lives of ME/CFS patients is increasing public  awareness to reduce stigma and ensure proper diagnosis and treatment. A large-scale public  awareness campaign should be launched to educate individuals about ME/CFS. One example of  a successful awareness campaign is the “I AM ALS” initiative, which increased visibility for  ALS (Gualano). A similar campaign for ME/CFS could leverage social media and high-profile  advocates to share the lived experiences of patients. For instance, Jennifer Brea, who directed the  documentary Unrest, has helped to raise awareness of ME/CFS (Raphelson). By encouraging  engagement, the campaign can humanize and normalize the illness. Public awareness efforts  should also include education for healthcare providers. Many doctors remain unfamiliar with the  diagnostic criteria for ME/CFS, leading to 84-91% of patients undiagnosed (Lim). To address this, medical training programs could be developed to train physicians on the best practices for  diagnosing and treating ME/CFS. 

Furthermore, structural reforms should be implemented to ensure that individuals with  ME/CFS are given the accommodations they need. For example, offering flexible work hours or  remote work options could make it possible for patients to remain employed despite the severity  of their condition. Likewise, advocacy organizations can work with lawmakers to push for  increased funding for research, which is the most underfunded illness by disease burden in  national health priorities (Backman). By amplifying the voices of patients and caregivers, these  organizations can advocate for policy changes that improve access to care and support for the  ME/CFS community. 

By fostering greater understanding and empathy, we can begin to break this cycle of  restlessness and provide patients with the care they deserve. Public awareness serves as the first  step in bridging the gap between the lived experiences of ME/CFS patients and a society that  often overlooks their struggles. With this awareness, recognition can empower healthcare  professionals, policymakers, and the public to enact structural reforms. As we raise awareness  and enact changes, we create a world where individuals can jump out of bed, excited for the  futures ahead of them.

Works Cited 

Arron, Hayley E., et al. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Biology of  a Neglected Disease.” Frontiers in Immunology, vol. 15, June 2024. Frontiers,  https://doi.org/10.3389/fimmu.2024.1386607. 

Backman, Isabella. “Will Long COVID Research Provide Answers for Poorly Understood  Diseases Like ME/CFS?” Yale School of Medicine, 1 Nov. 2022, Yale School of Medicine,  https://medicine.yale.edu/news-article/will-long-covid-research-provide-answers-for poorly-understood-ailments-like-chronic-fatigue/. 

Couzin-Frankel, Jennifer. “Chronic Fatigue Study Shows Syndrome’s Complexity.” Science, vol.  383, no. 6685, Feb. 2024, pp. 804–05. Science, https://doi.org/10.1126/science.ado7759. Gualano, Maria Rosaria, et al. “[The ‘Ice Bucket Challenge’: wondering about the impact of  social networks to promote public health interventions].” Igiene E Sanita Pubblica, vol.  71, no. 4, 2015, pp. 361–68. Igiene E Sanita Pubblica,  

https://pubmed.ncbi.nlm.nih.gov/26519744/. 

Lim, Eun-Jin, and Chang-Gue Son. “Review of Case Definitions for Myalgic  Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).” Journal of Translational  Medicine, vol. 18, July 2020, p. 289. Journal of Translational Medicine,  

https://doi.org/10.1186/s12967-020-02455-0. 

Raphelson, Samantha. “‘Unrest’ Director Turns Camera On Herself To Document Chronic  Fatigue Syndrome.” NPR, 2 Jan. 2018. NPR,  

https://www.npr.org/2018/01/02/575118137/unrest-director-turns-camera-on-herself-to document-chronic-fatigue-syndrome.

Rivera, Mateo Cortes, et al. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A  Comprehensive Review.” Diagnostics, vol. 9, no. 3, Aug. 2019, p. 91. Diagnostics,  https://doi.org/10.3390/diagnostics9030091.