Living with Myalgic Encephalomyelitis
😈 A Daily Hell 😈
Popularized under the misleading name “Chronic Fatigue Syndrome”
Names That Mask Reality
- Myalgic Encephalomyelitis: the medically accurate term, yet still widely unknown.
- Exertion Intolerance Syndrome: it brings sport to mind, while sometimes simply breathing is enough to cause exhaustion.
How It Feels: “Living Dead”
This is not a horror movie with “the undead.”
We live a life of horror as “the living dead.”
- Alive: we still breathe and think—often trapped in dark thoughts.
- Dead: lying down, unable to act, prisoners of our own bodies.
Why Words Matter
Using the term “Myalgic Encephalomyelitis” makes it clear that this is a severe neurological disease, not simple tiredness.
In personal testimonies (links to which I will provide on another page), many patients say they would rather be affected by a severe and potentially fatal disease—such as cancer, Alzheimer’s disease, diabetes, or pulmonary fibrosis—because they would know what they are fighting against and what outcome to expect.
Worldwide Prevalence of ME/CFS + Long COVID by Age Group
| Age Group | ME/CFS Only | Long COVID Only | Estimated Combined Prevalence |
|---|---|---|---|
| 0 – 10 years | ~0.1% – 0.75% | ~1.3% – 20% | 1.4% – 20.8% |
| 11 – 20 years | ~0.1% – 0.75% | ~25% | 25.1% – 25.75% |
| 21 – 30 years | ~0.89% | ~7.2% | ≈ 8.1% |
| 31 – 40 years | ~0.89% | ~7.2% | ≈ 8.1% |
| 41 – 50 years | ~0.89% | ~7.2% | ≈ 8.1% |
| 51 – 60 years | ~0.89% | ~7.2% | ≈ 8.1% |
| 61 – 70 years | ~0.89% | ~7.2% | ≈ 8.1% |
| > 70 years | ~0.89% | ~7.2% (estimate) | ≈ 8.1% |
Sources: CDC, NIH RECOVER, Santé publique France, Wikipedia (ME/CFS, Long COVID), Parents.com, PMC/NIH.
Living with this disease means surviving in an exhausted body, with a captive mind, and within a society that minimizes our suffering.