ME/CFS and School

The following are non-exhaustive lists of possible educational accommodations for individuals with ME/CFS. Because ME/CFS is a dynamic condition that varies in severity and presentation, different students may require different supports. It's often better to have an accommodation in place and not need it than to be without one when it's essential. While not all schools may offer these specific accommodations, they may provide alternative options to meet similar needs.

Possible ME/CFS K-12 Educational Accommodations 

Possible ME/CFS Adult Educational Accommodations 

ME/CFS as a Dynamic Disability: 

• Students with ME/CFS experience fluctuating symptoms and functional abilities that can change within a day or over time.  ME/CFS can be stable, relapse and remit, or progress.  Accommodations will be a moving target.

• Younger students may lack the language or self-awareness to communicate symptoms or needs clearly.

• Educators and caregivers must proactively observe and support students, with staff trained to recognize verbal and non-verbal signs of fatigue and cognitive difficulty.

• ME/CFS includes a spectrum of severity so accommodations needed will vary; all students experience at least a 50% reduction in functioning.

• Accommodations must be tailored to severity: mild cases may manage some in-person attendance with supports, while severe cases often require homebound instruction, remote learning, asynchronous coursework, and extended deadlines.

IDEA Overview and State Responsibilities

While the federal government provides grants to states under the Individuals with Disabilities Education Act (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 (FAPE) in the least restrictive environment. Additionally, infants and toddlers with disabilities and their families must 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.
(https://www.disabilityscoop.com/2023/07/25/ed-department-tells-states-to-step-up-idea-compliance/30472/)

Chronic Illness Recognition in Special Education

Unfortunately, the list of qualified disabilities for Individualized Education Programs (IEPs) or Section 504 of the Rehabilitation Act of 1973 plans (commonly called 504 plans) usually only considers chronic illness under “Other Health Impaired.” Special education services, accommodations, or supports are often not designed for students with chronic medical conditions or medically complex disabilities. Chronic illness should explicitly qualify for IEPs or 504 plans, and the IEP process needs to be inclusive and supportive of students with chronic illness.

For example, my middle son recently applied to a community college’s disability program, which offered multiple disability categories but no option for chronic illness or medical disability. Most schools are prepared for physical or learning disabilities but lack a path for medical disabilities unless medication management is required (e.g., diabetes), and even then, accommodations tend to be limited.

School Attendance and Funding Challenges

Funding in K-12 schools and higher education often depends on attendance, which places immune-compromised students at unnecessary risk when they attend school sick. This system pressures families of chronically ill students to send them to school despite disabling symptoms or face truancy threats. Medically disabled students must have equitable access to education without risking their health. Some districts have piloted or expanded remote learning options as accommodations for these students, but such efforts remain inconsistent and unevenly implemented.
(https://themighty.com/topic/chronic-illness/attendance-policies-hurt-disabled-students/)

ME/CFS and Chronic Absenteeism Awareness

School nurses and districts should recognize that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Infection Associated Chronic Conditions (IACCs), and other undiagnosed diseases often cause chronic absenteeism.
(https://nceo.umn.edu/docs/OnlinePubs/NCEOBrief15.pdf, https://www.nicswell.co.uk/health-news/chronic-fatigue-syndrome-cause-of-school-absence)

The CDC’s School-Based Active Surveillance (SBAS) project relies on school nurses to track chronic absenteeism to better understand how many students struggle with chronic illnesses. ME/CFS is a key example linked to chronic absenteeism.
(https://pubmed.ncbi.nlm.nih.gov/36540020/)

Studies show that school attendance is significantly reduced in many ME/CFS patients. Nijhof et al. (2011) found approximately 90% of patients missed 15 to 50 percent of school days over six months. A U.K. study identified ME/CFS as a leading cause of long-term health-related school absence.
(https://www.frontiersin.org/articles/10.3389/fped.2018.00302/full, https://www.ncbi.nlm.nih.gov/books/NBK284896/)

ME/CFS and related conditions may present differently in children compared to adults, including in pediatric patients with Long COVID. Understanding these differences is critical for diagnosis and intervention.

Pediatric ME/CFS: Key Resources and Research

• AMMES: Highlights differences between adult and pediatric ME/CFS, including symptom variability and diagnostic nuances.
  (https://ammes.org/tag/adult-mecfs-vs-pediatric-mecfs/)

• Massachusetts ME/CFS & FM Association: Focuses on pediatric-specific symptoms like cognitive impairment, orthostatic intolerance, and stresses the importance of early diagnosis.
  (https://massmecfs.org/disease-information/about-pediatric-me-cfs/)

• Solve ME/CFS Initiative: Provides a comprehensive guide on symptom presentation, school impact, and management strategies for children and young adults with ME/CFS.
  (https://solvecfs.org/wp-content/uploads/2019/06/CHILDREN-AND-YOUNG-ADULTS-WITH-MECFS.pdf)

• Open Medicine Foundation: Details pediatric-specific presentations and the importance of tailored interventions.
  (https://www.omf.ngo/mecfs-and-pediatrics/)

• Bateman Horne Center: Discusses severe pediatric ME/CFS, emphasizing school accessibility and medical severity.
  (https://batemanhornecenter.org/wp-content/uploads/filebase/providers/Severe-ME-in-Children-healthcare-08-00211.pdf)

• Frontiers in Pediatrics (2017): Peer-reviewed clinical study highlighting cognitive, physical, and emotional differences in pediatric ME/CFS.
  (https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full)
  
  

Important Studies on ME/CFS and Education

• The importance of school in the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): issues identified by adolescents and their families, focusing on mild to moderate cases but acknowledging the need for access options for severely ill students.
  (https://onlinelibrary.wiley.com/doi/full/10.1111/hsc.13942)

• NIH-funded study examining mononucleosis and CFS in college students.
  (https://www.leonardjason.com/2021/02/03/nih-funded-study-examines-mono-cfs-in-college-students/)

• Prevalence study of pediatric ME/CFS in community-based samples.
  (https://pubmed.ncbi.nlm.nih.gov/34113066/)
  
  

General IEP Guidance for Chronic Illness

General guidance on IEP development for chronic illness from the National Heart, Lung, and Blood Institute.
(https://www.nhlbi.nih.gov/files/docs/public/lung/guidfam.pdf)

Educational Accommodations for ME/CFS Patients

K-12 Resources:

• Meeting the educational needs of young ME/CFS patients and the role of the treating physician.
  (https://www.frontiersin.org/articles/10.3389/fped.2019.00104/full)

• Managing ME/CFS in children and adolescents:.
  (https://www.cdc.gov/me-cfs/children/index.html, https://www.cdc.gov/me-cfs/children/information-for-teachers-schools.html, https://www.cdc.gov/me-cfs/children/information-for-families.html)

• Faith Newton, Ed.D: Education of children with pediatric CFS/ME.
  (https://www.omf.ngo/faith-newton-ed-d-education-children-with-pediatric-cfsme/)

• ME/CFS MEAction Pediatric Pacing Guide.
  (https://www.meaction.net/wp-content/uploads/2022/08/Pediatric-Guide-to-Pacing-2.pdf)
  
  

College/University Resources:

• ME/CFS college accommodations.
  (https://www.meaction.net/wp-content/uploads/2020/11/University_Accommodations_103020.pdf)

• Environmental accommodations for university students.
  (https://content.iospress.com/download/work/wor203176?id=work%2Fwor203176)

• Guest blog on making reasonable accommodations for ME/CFS students.
  (https://solvecfs.org/guest-blog-making-reasonable-accommodations-for-mecfs-students/)