Severe ME/CFS with sun sensitivity and PEM, now much better after matcha
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
I have severe sun sensitivities that cause symptoms and PEM.
In context ↗ - At worst: Severe
I went to the beach expecting to be completely motionless and in the shade the entire time.
In context ↗ - Now: Much better
I have been making steady progress already in recovery but this just took it up a notch.
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Dusk 86002 describes a severe chronic illness with sun sensitivity and post-exertional malaise, and had been making steady progress in recovery. Two weeks before posting, a matcha latte on a beach trip let them spend the whole day in the sun, in the water and up stairs and still have energy. They have drunk matcha every morning since and say it took recovery up a notch; other caffeine flares their symptoms.
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What they tried
What they credit
Also tried
Their words about each treatment
- matcha · Helped
I got home and I still had energy! I couldn’t believe it. ... this just took it up a notch
In context ↗ - other caffeine · Worse
I cannot handle any other type of caffeine, it actually flares my symptoms.
In context ↗
Approaches: Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| — | severe chronic illness with sun sensitivity and PEMjust the first time after severe chronic illnessIn context ↗ | Severe |
| 2026-06-01 | beach day in the sun with energy afterwardsI got home and I still had energy! I couldn’t believe it.In context ↗ | Mild |
| 2026-06-15 | drinking matcha every morning, steady progressI have been making steady progress already in recovery but this just took it up a notch.In context ↗ | Mild |
Adverse events
- “I cannot handle any other type of caffeine, it actually flares my symptoms.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I have severe sun sensitivities that cause symptoms and PEM.
In context ↗
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