Extremely severe ME/CFS improved with time and rest, then relapsed to bedbound
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- Not stated
- Last post
- May 2026
In their words
- Condition: ME/CFS
I developed CFS from covid during the first wave.
In context ↗ - At worst: Very severe
I spent months being too sick to look at my phone at all, couldn't handle physical touch, had to be whispered to to speak
In context ↗ - Now: Relapsed
I was mostly housebound before and now I'm bed bound.
In context ↗ - Began after: COVID
I developed CFS from covid during the first wave.
In context ↗
Read from 14 of their posts and comments; links to the 10 this page draws on
Summary
Developed ME/CFS from COVID in the first wave of 2020, crashed to extremely severe for about a year, then slowly improved with time and radical rest to borderline mild-moderate. A COVID reinfection dropped them to moderate for over two years; a near-fatal car crash in December 2024, with multiple organ surgery and further infections, left them bedbound. Six years in they were severe, in a dark room, and saw little prospect of getting better.
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What they tried
What they credit
Also tried
Their words about each treatment
- Benzos · Not said
Benzos is one of the few things I tolerate well
In context ↗ - Pacing · Not said
You know I do pacing pretty well but sometimes I'm feeling at following every rule perfectly
In context ↗ - radical rest · Helped a lot
The biggest thing was time and radical rest.
In context ↗ - lower histamine diet · Helped
some things that I think helped around the edges - lower histamine diet
In context ↗ - cromalin · Helped
some things that I think helped around the edges - lower histamine diet, cromalin, antihistamines
In context ↗ - Flushing niacin · Helped
a few of the popular supplements particularly the Flushing niacin
In context ↗ - vagus nerve stimulator · Helped
My vagus nerve stimulator which helped the first time arrive today.
In context ↗ - bouncing back from covid program · Helped
they put out a program that was called bouncing back from covid ... I did find that helpful
In context ↗ - red light therapy · Not said
We've been doing some red light therapy, and I'm doing my best.
In context ↗ - IV and oral antibiotics · Not said
Lots of internal infections that required months of IV and oral antibiotics.
In context ↗ - stomach surgeries · Much worse
They ended up removing multiple organs. As you can guess I'm now much worse.
In context ↗ - dairy-free diet · Not said
I didn't eat dairy for years since so many people have problems with it and I assumed I did
In context ↗
Approaches: H1 antihistamines · Antihistamines & MCAS · Diet · Radical rest · Supplements · Vagus nerve stimulation
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 2 months 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 | After |
|---|---|---|---|
| 2020 | ME/CFS after COVID in the first waveI developed CFS from covid during the first wave.In context ↗ | Not stated | |
| 2020-2021 | crashed to extremely severe for about a yearI spent months being too sick to look at my phone at all, couldn't handle physical touch, had to be whispered to to speak, it was hell. Didn't bathe for close to a year.In context ↗ | Very severe | |
| 2021 | slow climb to borderline mild-moderateVery very slowly after about a year things started to improve and I was able to be well enough to sit at the computer, watch tv, have Lego as a hobbyIn context ↗ | Moderate | Radical rest |
| 2022 | COVID reinfection dropped them back to moderateGot covid again and knocked down too moderate. Been there over 2 yearsIn context ↗ | Moderate | |
| December 2024 | near-fatal car crash, multiple organ surgery, COVID and internal infections; CFS worsened to severeI am severe now. I'm in a mostly dark room and can barely tolerate looking at my phone and can only occasionally watch YouTube videos.In context ↗ | Severe | |
| 2025-11-11 | bedbound and much worseI was mostly housebound before and now I'm bed bound.In context ↗ | Severe |
Adverse events
- “there's one that is basically a reach and a yawn that tires me a little so I don't do the full time frame” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Crashed myself hard into extremely severe for about a year
In context ↗ - POTS & dysautonomia
Alcohol makes my POTS much worse.
In context ↗ - Light & noise sensitivity
I'm in a mostly dark room and can barely tolerate looking at my phone
In context ↗ - Mast cell (MCAS) & allergies
I have a lot of food problems, but I also have no problems with chocolate and sugar.
In context ↗ - Anxiety & low mood
I don't want to fucking be alive.
In context ↗
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