Summary of Key Recommendations
Prioritize OI treatment: Orthostatic intolerance affects 70–90% of pediatric ME/CFS patients and is often the most treatable symptom. Start with non-pharmacological measures (hydration, salt, compression, positioning) and add medications (fludrocortisone, midodrine) if needed.
Optimize sleep: Melatonin is first-line for pediatric sleep dysfunction. Low-dose trazodone or amitriptyline are second-line options. Maintain consistent sleep-wake schedule even when homebound.
Manage pain appropriately: Use acetaminophen and NSAIDs first-line. Add gabapentin or low-dose amitriptyline for neuropathic pain. Avoid routine opioid use. Referral to pediatric pain specialist for refractory cases.
Prevent bedrest complications: Daily passive range of motion prevents contractures. Ensure adequate calcium, vitamin D, and occasional weight-bearing to prevent bone loss. Monitor growth.
Maintain educational continuity: Secure homebound instruction through school district. Reduce academic demands to match capacity. Focus on core subjects and interest-based learning. Plan flexibly for graduation timeline.
Support the whole family: Parents need respite and support. Siblings need individual attention and validation. Financial and mental health resources should be mobilized proactively.
Monitor for emergencies: Maintain low threshold for evaluating new symptoms. Watch for malnutrition, dehydration, severe OI complications, and mental health crises.
Maintain hope: Pediatric ME/CFS prognosis is substantially better than adult disease. With appropriate management, most children improve significantly or recover over time. Recovery cannot be rushed, but it is achievable.
For ambulatory pediatric patients who are still attending school, see Chapter Pediatric ME/CFS: School-Attending and Ambulatory Cases for school accommodation frameworks, IEP/504 planning, and pacing strategies for school-attending children. For adult severe ME/CFS management, see Chapter Urgent Action Plan for Severe Cases. For detailed discussion of pathophysiology underlying these interventions, see Chapter Cardiovascular Dysfunction (orthostatic mechanisms), Chapter Energy Metabolism and Mitochondrial Function (metabolic dysfunction), and Chapter Immune System Dysfunction (immune abnormalities).