11/05/2026
ME/CFS awareness. I'm so grateful for the ME/CFS community. They swiftly saw the problem that Long Covid would become, advocated for us, validated us and shared their knowledge. Thank you 💙💙💙💙💙💙💙
Below is an excellent recap (Dr Robert Groysman) of what they did
Before Long COVID had a name, ME/CFS patients had already mapped the territory.They documented PEM decades
before researchers had a term for it. They tracked autonomic dysfunction in journals and spreadsheets long before tilt table tests became standard. They fought for recognition from physicians, insurers, and family members who told
them nothing was wrong.
What the ME/CFS community built:
1 -A language for invisible illness. "Energy envelope." "Payback." "Crash." These terms did not come from research labs. They came from patients describing their reality when medicine had no vocabulary for it.
2 -Advocacy infrastructure. Organizations fighting for research funding, disability recognition, and
clinical guidelines existed for years before 2020.
When Long COVID arrived, that infrastructure gave millions of new patients a foundation to stand on
3 -Pacing as a survival strategy. The concept of activity management, staying within your energy limits to prevent crashes, was dismissed aslaziness for decades. ME/CFS patients proved it was the single most effective self-management tool for post-viral fatigue conditions
4- Proof that post-viral illness is real. Every Long COVID patient benefits from the decades of ME/CFS research establishing biological markers
immune dysfunction patterns, and mitochondrial abnormalities in post-viral populations
The overlap between ME/CFS and Long COVID is substantial. Many patients meet criteria for both.
The mechanisms driving each condition share common ground in autonomic, mitochondrial, and immune pathways
To the ME/CFS community: you were here first.
You fought when nobody was listening. Long COVID patients stand on the foundation you built
