ME/CFS and School
“While the federal government provides grants to states under IDEA, it is the state’s responsibility to educate students with disabilities in accordance with the law. This guidance underscores each state’s general supervision responsibility to meet the purpose of IDEA and ensure that all school-age children, regardless of the nature or severity of their disability, can access (a free appropriate public education) in the least restrictive environment and that infants and toddlers with disabilities and their families receive appropriate early intervention services to the maximum extent appropriate,” said Valerie C. Williams, director of the Education Department’s Office of Special Education Programs.
Unfortunately, the list of qualified disabilities for IEPs or 504s usually only considers chronic illness under "Other Health Impaired" and special education services, accommodations, or supports aren't typically set up for medically disabled students. We need chronic illness to be a qualification for an IEP or 504. The IEP process needs to be written so accommodations and goals are inclusive and supportive of chronic illness students.
My middle son recently had to apply to a community college's disability program. They listed multiple disability options that could be checked off but there was no option for chronic illness or medical disability. Most schools are prepared for physical disabilities or learning disabilities but really have no path forward for medical disabilities unless it is something that requires medication like diabetes (and even that tends to be limited to medication and food with no allowances for being disabled for medical reasons).
Funding in K-12 schools (and in college/universities) needs to move away from attendance because it places immune compromised students at unnecessary risk when students come to school sick and it causes families with chronically ill students to pressure their students to attend when they are disabled by their disease or to be threatened by the districts with truancy. (https://themighty.com/topic/chronic-illness/attendance-policies-hurt-disabled-students/) Medically disabled students need to be able to access education too.
School nurses and districts should be aware ME/CFS and other IACCs (Infection Associated Chronic Conditions) as well as other undiagnosed diseases can be a cause of chronic absenteeism (https://nceo.umn.edu/docs/OnlinePubs/NCEOBrief15.pdf Students with Disabilities & Chronic Absenteeism, https://www.nicswell.co.uk/health-news/chronic-fatigue-syndrome-cause-of-school-absence Chronic fatigue (UK)) - The CDC has "The School-Based Active Surveillance (SBAS) project relies on school nurses to help track chronic absenteeism among students, as a way to better understand how many students may struggle with chronic illnesses. ME/CFS is an example of an illness that may result in chronic absenteeism." https://www.cdc.gov/me-cfs/programs/School-Based-Active-Surveillance.html but I am not sure how many school nurses are aware of this program.
https://www.frontiersin.org/articles/10.3389/fped.2018.00302/full#:~:text=The%20average%20amount%20of%20time,their%20school%20life%20(15), https://www.ncbi.nlm.nih.gov/books/NBK284896/ "Numerous studies found that school attendance is significantly reduced in a large percentage of patients (Crawley and Sterne, 2009; Smith et al., 1991; Van Geelen et al., 2010; Werker et al., 2013). For instance, Nijhof and colleagues (2011) found that approximately 90 percent of the patients they studied had “considerable” school absence (defined as missing 15 to 50 percent of all school days) during the previous 6 months. Further, a U.K. study showed that ME/CFS was the primary cause of long-term health-related school absence (Dowsett and Colby, 1997).") and that these diseases may present differently in pediatric patients (https://covid19.nih.gov/news-and-stories/what-long-covid-looks-like-children-young-adults, https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full)
Some interesting studies
"The importance of school in the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): issues identified by adolescents and their families" https://onlinelibrary.wiley.com/doi/full/10.1111/hsc.13942 - this does seem to be focused on mild/moderate ME/CFS students (and severely ill students need access options too)
NIH-Funded Study Examines Mono, CFS in College Students https://www.leonardjason.com/2021/02/03/nih-funded-study-examines-mono-cfs-in-college-students/
The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community‑Based Sample https://pubmed.ncbi.nlm.nih.gov/34113066/
General IEP advice for Chronic Illness:
https://www.nhlbi.nih.gov/files/docs/public/lung/guidfam.pdf
Here are some resources: Educational Accommodations for ME/CFS Patients:
K-12:
https://www.frontiersin.org/articles/10.3389/fped.2019.00104/full Meeting the Educational Needs of Young, ME/CFS Patients: Role of the Treating Physician
https://www.cdc.gov/me-cfs/pdfs/me-cfs-children-healthcare-pros.pdf Managing ME/CFS in Children
and Adolescents A Fact Sheet for Healthcare Professionals
https://www.omf.ngo/mecfs-and-pediatrics/ ME / CFS and Pediatrics (Open Medicine Foundation)
https://www.omf.ngo/faith-newton-ed-d-education-children-with-pediatric-cfsme/ Faith Newton, Ed.D: Education of Children with Pediatric CFS/ME
https://batemanhornecenter.org/wp-content/uploads/filebase/providers/Severe-ME-in-Children-healthcare-08-00211.pdf Severe pediatric ME/CFS
https://www.meaction.net/wp-content/uploads/2022/08/Pediatric-Guide-to-Pacing-2.pdf ME/CFS MEAction Pediatric Pacing Guide
Cognitive Impact:
https://www.nature.com/articles/s41598-021-04764-w#Sec19
College/University:
https://www.meaction.net/wp-content/uploads/2020/11/University_Accommodations_103020.pdf ME/CFS college accommodations
https://content.iospress.com/download/work/wor203176?id=work%2Fwor203176 Environmental accommodations for University students