Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) can strike at any age. The presentation and course of ME / CFS is often different in children and adolescence than adults. This vulnerable population needs support to manage life with ME / CFS and their parents’ need tools to help them. OMF shares the following resources to help parents advocate and support their children.

Dr. David S. Bell, a member of our ME / CFS Scientific Advisory Board and pioneer in the field of Pediatric ME / CFS, provided an in-depth description of pediatric ME / CFS.

A ME / CFS Pediatric Primer (Frontiers in Pediatrics, 2017) provides a medical understanding for pediatricians, family practice doctors, and all healthcare providers involved in children/student’s care. We encourage parents to share this link with your child’s physician and healthcare team. In addition, this esteemed international writing group has also provided a PDF of the monograph version of the Young Persons’ ME / CFS Primer by Peter Rowe, MD, Rosemary Underhill, MB, Kenneth J. Friedman, Ph.D.,  Alan Gurwitt, MD, et al with indexing (funded by OMF) in a downloadable Pediatric Primer monograph with index.

The Primer has been elaborated on by Dr. Peter Rowe and Dr. Nigel Speight in a recorded discussion on pediatric ME / CFS diagnosis and management. View the two short videos for medical professionals here. (Shared with permission from Voices from the Shadows.)

The impact of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) on a young person can be very significant. To help young people and their families cope with educational, social, and developmental challenges, in addition to medical problems, we present four outstanding resources developed by Dr. Faith Newton of Delaware State University. We encourage parents to print these documents and share them with your child’s school administration.

 

The CDC has two resources to help parents advocate for their children:

  • Managing ME / CFS in Children and Adolescents: Fact Sheet for Healthcare Professionals  click here
  • Helping Your Child Manage Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS): Fact Sheet for Parents and Guardians click here

 

 

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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