My disease ME/CFS

CFS stands for Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis - ME/CFS). It is a complex disorder characterized by persistent, severe fatigue that is not relieved by sleep or rest and that significantly affects daily life.

Symptoms

The most common symptoms of ME/CFS include

  • Extreme fatigue that is not improved by sleep or rest
  • Concentration disorders and memory problems ("brain fog")
  • Sleep disorders
  • Muscle pain and joint pain
  • Headache
  • Sensitivity to light and noise
  • Dizziness or drowsiness
  • Worsening of symptoms after physical or mental exertion (post-exertional malaise)

The exact causes and disease mechanisms of ME/CFS are not yet fully understood. Research examines, among other things, immunological, neurological, vascular, and metabolic changes; the disease often begins after an infection. There is currently no curative therapy. Treatment is based on individual symptoms. Adapted energy management (Pacing) is particularly important to avoid overload and a worsening of symptoms due to post-exertional malaise (PEM).

How I am doing

🧓Degree of care
PG 4
Since 05.2021
♿Severely disabled
100 %
Since 06.2021
🛏️Bedriddenness
100%
Complete

🧠 Cognitive functions

🧠 Concentration

09.2026
Before: 2/10
Stimulus-response, no focus
Current: 5/10
Simple activities for a short time

💭 Thinking

09.2026
Before: 2/10
Reaction without reflection
Current: 7/10
Longer thinking distances possible

📖 Read

09.2026
Before: 2/10
Individual words
Current: 5/10
Simple texts section by section

💬 Communication

🗣️ Speak

09.2026
Before: 2/10
Single words per hour
Current: 3/10
Very short sentences with difficulty

🎧 Listening

09.2026
Before: 2/10
Individual sounds possible
Current: 3/10
A few seconds of listening

⌨️ Writing

09.2026
Before: 2/10
Individual characters or words
Current: 5/10
Short messages possible

🏃 Activities

🍽️ Nutrition

09.2026
Before: 2/10
Liquid food or small bites
Current: 9/10
Minor restrictions when eating

📺 Television

09.2026
Before: 2/10
Seeing by the second possible
Current: 4/10
Very short clips with a pause

The course of my illness

Phase 1

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