Off work with ME/CFS, brain fog and PEM, now recovered and riding 200km
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 19 months
- Last post
- Oct 2025
In their words
- Condition: ME/CFS
who's diagnosed me with CFS
In context ↗ - At worst: Severe
Wasn't able to get out of bed for a month in March
In context ↗ - Now: Recovered
completed a 200km bike ride a couple of weeks ago
In context ↗ - Began after: COVID
29M with long covid since last november
Read from 12 of their posts and comments; links to the 6 this page draws on
Summary
A 29-year-old man fell ill in November 2023 with a covid-like illness and was later diagnosed with CFS. Brain fog, insomnia and fatigue forced him to stop work, and he also had PEM and facial spasms. He improved enough to return to work in June 2024 and was about 90% recovered by September, but overexertion brought his symptoms back and he spent a month unable to leave his bed in March 2025. By October 2025 he had completed a 200km bike ride.
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What they tried
What they credit
Their words about each treatment
- vaccine · Helped
The only thing that has maybe helped so far is the vaccine, which I got in may. This has lessened my other symptoms, but my facial spasms didn't start until after I got it.
In context ↗ - swimming · Worse
I did half what was normal before recovering and I just experienced a facial spasm - my one remaining consistent symptom - on the walk home, as well as feeling extremely tired.
In context ↗ - avoiding straining myself when tired · Not said
I read quite early on that straining yourself when you're tired is bad, and I've endeavored not to. Really glad about that retrospectively.
In context ↗
Approaches: Vaccination
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2023-11 | fell ill with a covid-like illnessLast November I got sick with something.In context ↗ | Mild |
| 2023-12 | stopped working with brain fog, fatigue and insomniaI got better for a couple weeks, but then had to stop working because I started dealing with brain fog, fatigue, and insomnia.In context ↗ | Moderate |
| 2024-06 | improved enough to return to workwhen my symptoms improved enough to return to workIn context ↗ | Mild |
| 2024-09-10 | about 90% over itI'm still not 100%, but probably 90% over it.In context ↗ | Near normal |
| 2024-09-10 | crashed after swimming half his usual amountI did half what was normal before recovering and I just experienced a facial spasmIn context ↗ | Near normal |
| 2024-10 | overdid it; all symptoms returned, off work againI was great for about three months, but I think I overdid it, and then my symptoms all returned.In context ↗ | Moderate |
| 2025-03 | in bed for a monthWasn't able to get out of bed for a month in MarchIn context ↗ | Severe |
| 2025-10-03 | completed a 200km bike ridecompleted a 200km bike ride a couple of weeks agoIn context ↗ | Recovered |
Adverse events
- COVID vaccination as treatment“This has lessened my other symptoms, but my facial spasms didn't start until after I got it.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I do get post exertional malaise if I overexert myself
In context ↗ - Brain fog
Biggest symptom by far is brain fog.
In context ↗ - Sleep problems
I started dealing with brain fog, fatigue, and insomnia
In context ↗ - Pain & fibromyalgia
I do get post exertional malaise if I overexert myself, but it's just minor pain.
In context ↗ - Neuropathy & tingling
I started getting facial spasms ... my muscles twitch all over
In context ↗
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