Housebound with ME/CFS after EBV, now bedridden
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- Not stated
- Last post
- Mar 2025
In their words
- Now: No benefit
i do feel its a little bit worse now
In context ↗ - Began after: glandular fever or EBV
before I developped ME/CFS from EBV at 19yo
In context ↗
Read from 7 of their posts and comments; links to the 4 this page draws on
Summary
They developed ME/CFS after EBV at 19 and had been ill about 10 years, normally housebound. Two COVID-19 infections in 2023 each took months to recover from; the first left them hospitalised with violent vomiting and severe throat pain. Pfizer vaccinations repeatedly put them in bed for a week. By March 2025 they said they had become bedridden, worse than their usual housebound baseline.
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What they tried
Their words about each treatment
- iron infusions · No change
I still get the infusions and there is almost no effect after i got ME/CFS
In context ↗ - Pfizer vaccine · Worse
everytime i got it i was in bed for a week with terrible muscle, bone and throat pain, it was like being heavily sick
In context ↗ - opioid · No change
i had to take an opioid and it didnt help
In context ↗
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 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| age 19 | ME/CFS onset after EBV glandular feverbefore I developped ME/CFS from EBV at 19yoIn context ↗ | Not stated |
| May 2023 | first COVID-19 infection, hospitalised with violent vomiting, 6 weeks until able to go outThe first time I got Corona was in May 2023 ... It lasted for about 6 weeks until i could go out again | Severe |
| September 2023 | second COVID-19 infection, dragged on 3-4 monthsthe second time was more or less after those 3 mothns ... it dragged out even longer, more or less 3-4 months to feeling at original baselineIn context ↗ | Severe |
| March 2025 | became bedridden in a bad phase, worse than usual housebound baselineI have become bedridden, where Im normally more housebound.In context ↗ | Severe |
Adverse events
- COVID vaccination as treatment“everytime i got it i was in bed for a week with terrible muscle, bone and throat pain, it was like being heavily sick.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
For me really PEM is the hallmark.
In context ↗ - Brain fog
Also a lot of braunfog
In context ↗ - Pain & fibromyalgia
you get muscle and bone aches
In context ↗ - Muscle weakness
its kind of an inability to be upright, to function in any way, like your body is weighed down by lead
In context ↗ - Flu-like symptoms
sore throat, feeling hot or cold
In context ↗ - Temperature regulation
feeling hot or cold
In context ↗ - Tinnitus
tinnitus, sore throat
In context ↗ - Anxiety & low mood
which brought me to a very bad place mentally
In context ↗ - Gut problems
i didnt stop throwing up violently
In context ↗