Environmental accommodations for university students affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Abstract

BACKGROUND: Today, 24% of college and university students are affected by a chronic health condition or disability. Existing support programs, including disability services, within colleges and universities are often unaccustomed to addressing the fluctuating and unpredictable changes in health and functioning faced by students with severe chronic illnesses. This situation is especially difficult for students with lesser-known, invisible diseases like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a complex disease affecting up to 2.5 million Americans which often begins in late adolescence or young adulthood. OBJECTIVE: Educate occupational therapists (OTs) about ME/CFS and steps they can take to assist students. METHODS: This work is based on a review of the scientific literature and our collective professional/ personal experiences. RESULTS: ME/CFS' effects on multiple organ systems combined with the unusual symptom of post-exertional malaise frequently and substantially decrease function. Currently, no effective disease-modifying treatments have been established. Nevertheless, OTs can help student maximize their participation in university life by identifying potential obstacles, formulating practical solutions and negotiating with their institutions to implement reasonable, environmental accommodations. CONCLUSIONS: Through understanding this disease, being aware of possible support options, and recommending them as appropriate, OTs are in unique position to greatly improve these students' lives.

Feeling like ‘a damaged battery’: exploring the lived experiences of UK university students with ME/CFS

“…Experiences of legitimization, and the subsequent positive outcomes on well-being and sense of self have also been found in previous research [38,39]. The findings of the current study also add to recent literature that recommends students with ME/CFS need to experience a compassionate understanding of their illness at university [32].…”

“…Therefore, universities are required to provide reasonable adjustments to students with disabilities. However, previous research suggests that universities struggle to support students with fluctuating conditions such as ME/CFS [32]. The present study is unique in its focus on the experiences of university students with ME/ CFS.…”

Factors related to educational adaptations and social life at school experienced by young people with CFS/ME: a qualitative study

“…17 18 This includes the important engagement from occupational therapists in identification of potential obstacles, solutions and subsequent advice to teachers Open access on individualised adaptations. 19 Teachers' genuine concern about their students' needs is valuable, nevertheless, attitudes towards CFS/ME might impact experiences in students with CFS/ME. 17 Advice from healthcare providers is usually necessary to prevent a course of intuitive trying and failing when adapting education for young people with CFS/ME.…”

Rethinking Disability Inclusion in Intercollegiate Athletics

“…For those with disabilities, standardized testing services offer accommodations; however, some of these add additional burdens on the student to seek necessary accommodations (Stokowski, 2013;Stokowski et al, 2017). For example, having extended time could lead to some students experiencing testing fatigue after sitting in an isolated room for more than eight hours with minimum breaks (Chu et al, 2020). As institutions begin to reevaluate if standardized test scores will be used to determine admissions requirements (Geisinger, 2021), it is important for the NCAA or other governing bodies in athletics to consider if the standardized testing scores should remain a critical aspect to determining initial eligibility (Huml et al, 2019).…”