Meeting the Educational Needs of Young, ME/CFS Patients: Role of the Treating Physician, 2019, (Faith) Newton

[Andy]

Introduction
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disabling, chronic disease characterized by the body's inability to produce sufficient energy for normal everyday activities. Children with ME/CFS experience debilitating fatigue referred to as post-exertional malaise (PEM) after minimal mental or physical exertion which is not relieved by sleep. It can significantly reduce the ability of the child to take part in personal, educational, or social activities and can compromise executive function, and can result in a moderate to severe disability. As many as 1% of school-age children suffer from this disease in varying degrees of severity, and ME/CFS has been shown to negatively impact school attendance, participation, connectedness, and academic performance (1). Some studies suggest that ME/CFS may be the major cause of extended school absences (2).

Whereas, the literature supplying practice-based guidance for other chronic conditions affecting children in school, such as Autism and Attention Deficit Hyperactivity Disorder (ADHD) will be found in educational journals, very little guidance for students with ME/CFS appears in the clinical medicine literature. Although school nurses are beginning to play a larger role in supporting these children, physicians or healthcare providers retain primary responsibility of informing the school system of the needed adjustments for the young ME/CFS patient to succeed in the school environment.

This article argues that the physician has a much broader responsibility to provide diagnostic, symptomatic, and treatment information about ME/CFS than they would with other conditions such as Autism or ADHD that qualify students for special services. For students with ME/CFS, the physician's letter required in the school's evaluation process is a critical resource to advise and guide education professionals regarding appropriate student placement, classroom support, and instructional accommodations or modifications. The specifics of what should be included in a model physician's letter are included.

https://www.frontiersin.org/articles/10.3389/fped.2019.00104/full

 

[Hutan]

This is paper is readable and addresses an important issue. I'd like to see it, or at least a summary of its conclusions, read by GPs and those writing clinical guidance material for them.

In terms of patient outcome, the time spent by the physician in assisting the young patient retain educational achievement is time well spent. For patients and their families, dealing with school-related issues consumes far more time and energy on a daily basis than managing medications or any other ME/CFS-abating procedure. From a psychological and motivational standpoint, these families often equate an inability to achieve success in school with long-term negative impacts on their child. Even if the child responds to treatment after months or years, and achieves partial remission of symptoms, the lost semesters at school and the opportunities to complete an education and thereby become a potentially self-sustaining adult, can make dealing with this disease appear daunting.

The additional hour expended by the physician in the thoughtful preparation of his or her letter to the school can improve motivation and reduce stress, while simultaneously increasing the chances of successful clinical and educational outcomes for this child.