Long Covid Podcast 208 - From ME/CFS to a Full Life: A Mother’s Perspective on Her Son’s Recovery
Mar 18, 2026
A mother recounts her son’s viral‑triggered crash at 13 and the winding path back to full activity. They cover pacing with colour‑coded diaries, autonomic nervous system retraining, and Mickel Therapy. Emotional links, play and joy as nervous‑system tools get attention. The story touches on NHS limits, caregiver strain, boundary setting, relapse at university, and life regained with work, travel and climbing.
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Refer Early To Specialist Paediatric ME/CFS Clinics
- Do seek specialist paediatric ME/CFS services early because Clare's GP referral to Bristol/Bath expedited assessment and management.
- Early specialist input delivered pacing diaries and colour‑coded activity plans that stabilised him at ~40% function.
ANS Rewire Produced Large Functional Gain
- After plateauing for years at ~40%, Clare's son completed Dan Neuffer's ANS Rewire program at age 16–17 and jumped to about 80% function.
- The improvement correlated closely with the program, enabling A‑levels and partial independence.
Use Colour Coded Pacing To Prevent Boom And Bust
- Try structured pacing and activity management with a daily diary to avoid boom‑and‑bust cycles.
- Clare's son's colour‑coded diary (red/orange/green) was crucial and raised his function from plateau to ~40%.