ME/CFS pain and flu-like symptoms, improved with less activity then relapsed after COVID
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 7 years
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
I’m still having occasional relapses and can’t do too much yet.
In context ↗ - At worst: Moderate
after reducing my activities to a minimum, I - very slowly - felt some improvement. I’m still not there yet after 2 years
In context ↗ - Now: Relapsed
between 2021 and 2024 I had some better years, but in 2025 I caught COVID again and relapsed unfortunately.
In context ↗ - Began after: glandular fever or EBV
I’ve felt the same after contracting EBV in May 2019.
Read from 8 of their posts and comments; links to the 8 this page draws on
Summary
Wave 11574 fell ill in May 2019 after an EBV infection, with pain, flu-like feelings and occasional relapses. Cutting activity to a minimum brought slow improvement, and 2021 to 2024 were better years. A COVID reinfection in 2025 caused a relapse. A stellate ganglion block in 2026 made them faint, with a droopy eye and very tired; a €200 Amofit S had no effect so far.
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What they tried
What they credit
Also tried
Their words about each treatment
- reducing my activities to a minimum · Helped
after reducing my activities to a minimum, I - very slowly - felt some improvement
In context ↗ - iron bisclycinate · Not said
I started with iron bisclycinate 30mg, but now (August) my ferritin dropped to 28
In context ↗ - Amofit S · No change
I bought the Amofit S (~€200), but haven't noticed any effects yet. Hopefully it'll work eventually.
In context ↗ - recovery interviews by Raelan Agle on YouTube · Helped
How to deal with crashes is tough, I also struggle regularly. For me it helps to remember that recovery isn’t linear and to watch recovery interviews by Raelan Agle on YouTube
In context ↗ - SGB · Not said
SGB was… interesting. I fainted and had a droopy eye afterwards, and now I’m verrrry tired. We’ll see how it goes.
In context ↗
Approaches: Radical rest
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 11 months after onset: the story doesn’t say how ill they were before that. 1 step has no time and sits in story order between the steps around it. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| May 2019 | fell ill after an EBV infectionI got sick in May 2019.In context ↗ | Not stated |
| April 2020 | occasional relapses, could not do muchI’m still having occasional relapses and can’t do too much yet.In context ↗ | Moderate |
| May 2021 | slow improvement after cutting activity to a minimumafter reducing my activities to a minimum, I - very slowly - felt some improvementIn context ↗ | Moderate |
| between 2021 and 2024 | several better yearsbetween 2021 and 2024 I had some better yearsIn context ↗ | Mild |
| 2025 | relapsed after catching COVID againin 2025 I caught COVID again and relapsed unfortunatelyIn context ↗ | Moderate |
| July 2026 | still struggling with crashes; very tired after a stellate ganglion blockrecovery isn’t linear, that’s something I really noticed the last 7 years, so I try to keep that in mind when I feel worse.In context ↗ | Moderate |
Adverse events
- Stellate ganglion block“I fainted and had a droopy eye afterwards, and now I’m verrrry tired.” In context ↗ Low blood pressure or fainting
- Stellate ganglion block“I fainted and had a droopy eye afterwards, and now I’m verrrry tired.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Did you also relapse when you overexerted yourself? (too much physical exertion mainly)
In context ↗ - Pain & fibromyalgia
I don’t feel pain/flu-like 24/7 anymore.
In context ↗ - Anxiety & low mood
I can still remember how shitty and sad I felt 2.5 years in.
In context ↗
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