Bedbound with ME/CFS and PEM, now somewhat better with pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
It took another 3 months for cfs to be confirmed as part of my post covid picture.
In context ↗ - At worst: Severe
I have gone from always bedbound with PEM to mostly housebound with PEM as an aftermath of activity and may last several weeks
In context ↗ - Now: Somewhat better
i've had some improvement to moderate when pacing
In context ↗ - Began after: COVID
I almost died during my acute covid infection, resulting in this condition.
In context ↗
Read from 10 of their posts and comments; links to the 6 this page draws on
Summary
Moon 69028 nearly died from an acute COVID infection about four years before writing and was left constantly bedbound with post-exertional malaise. A doctor's post-COVID treatment plan around 15 months in moved them to housebound, and pacing later held them at moderate. A double vaccination triggered a severe adverse reaction and one of their worst PEM episodes in months, and a mild physio programme pushed them back to severe; they stopped physio to try to return to moderate.
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What they tried
What they credit
Also tried
Their words about each treatment
- steroids · Not said
Photos of steroids needed to breathe better.
In context ↗ - pacing · Helped
I have held this sentiment for ~4 years now that I don't know when, but i've had some improvement to moderate when pacing
In context ↗ - Visible · Not said
I used visible last year but did not renew my subscription. I was frustrated from overexertion alerts for just putting on clothing.
In context ↗ - treatment for radiculopathy · Worse
My recovery time dropped to 4 days last year and early this year but has increased to 10 days minimum since starting treatment for radiculopathy.
In context ↗ - physio · Much worse
my current baseline since resuming really mild physio has put me back in severe worsened over the last 2 weeks
In context ↗
Approaches: Pacing
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 |
|---|---|---|
| onset | acute COVID infection that nearly killed themI almost died during my acute covid infection, resulting in this condition.In context ↗ | Severe |
| first years of illness | constantly bedbound with PEMalways bedbound with PEMIn context ↗ | Severe |
| about 15 months after infection | post-COVID specialist treatment plan; moved from bedbound to houseboundThis moved me from constantly bedbound to housebound.In context ↗ | Moderate |
| November 2025 | two vaccinations in one day brought PEM and a severe adverse reactionSo here I am with PEM and severe adverse reaction.In context ↗ | Severe |
| November 2025 | mild physio pushed them back to severe over two weeksmy current baseline since resuming really mild physio has put me back in severe worsened over the last 2 weeksIn context ↗ | Severe |
| 2025-12-06 | back to moderate with pacingi've had some improvement to moderate when pacingIn context ↗ | Moderate |
Adverse events
- “I explained to a doctor that I am diagnosed with CFS and too fatigued to leave my house, but have a swollen arm post vaccination ... So here I am with PEM and severe adverse reaction.” In context ↗ Side effects
- “It was objectively one of my worst PEM episodes in months (in part because I was double vaxxed at clinic)” In context ↗ Made symptoms worse
- “My recovery time dropped to 4 days last year and early this year but has increased to 10 days minimum since starting treatment for radiculopathy.” In context ↗ Made symptoms worse
- Physical therapy / physiotherapy“my current baseline since resuming really mild physio has put me back in severe worsened over the last 2 weeks” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
When i have PEM, like today, I am bedbound.
In context ↗ - Brain fog
In the first three years, I was terribly confused, and this condition did not make sense to me because I did not die.
In context ↗ - Anxiety & low mood
I have sometimes said that I wish I died.
In context ↗ - Breathlessness
Photos of steroids needed to breathe better.
In context ↗ - Temperature regulation
I have photos of 41°C fever.
In context ↗ - Muscle weakness
I am not speaking or able to grab a quick meal from the fridge.
In context ↗
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