Moderate ME/CFS with bedbound days, now near normal after pacing and better sleep
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Oct 2025
In their words
- Condition: ME/CFS
i believe my cfs is caused by covid lingering in the brain
In context ↗ - At worst: Moderate
i have returned to almost baseline from moderate
In context ↗ - Now: Near normal
i am at 95% baseline from moderate. cfs from covid/antibiotic resistant pneumonia same time
In context ↗ - Began after: COVID
covid - > pneumonia -> asthma with c-ptsd + autism + bipolar all flaring up at the same time was my cfs trigger
Read from 15 of their posts and comments; links to the 10 this page draws on
Summary
Pebble 37023 developed ME/CFS after COVID and antibiotic-resistant pneumonia and was moderate, with bedbound days. Through pacing, very slow graded activity increases, mental-health work and better sleep he improved to mild and then to about 95% of baseline, calling himself in remission. Flare-ups now last a day or less, though he had one lasting several days in October 2025.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing and resting immediately after tasks · Helped
i've had some of my ability regained by controlling my pacing, keeping my spirits up and hope in my progress, and managing my heart rate and sleep
In context ↗ - graded "activity" therapy · Helped a lot
i have returned to almost baseline from moderate with graded "activity" therapy (not! excersize.)
In context ↗ - therapy / mental health work · Helped
working on my distress tolerance and my mental health was very key in getting to remission
In context ↗ - THC · Helped
sleep is the only thing that makes my symptoms better
In context ↗ - melatonin · Worse
melatonin makes me SO groggy unfortch!
In context ↗ - prescribed sleep medicines · Not said
i've been prescribed lots of sleep medicines but thc is by and far the best
In context ↗ - corticosteroids (daily, for asthma) · Not said
i take corticosteroids daily for asthma so maybe you're onto something, maybe those have helped me improve too
In context ↗ - steroid nasal spray (Mometasone Furoate) · Helped
helps me a lot too. i got mine from covid and that space in the sinuses is probably a good viral reservoir
In context ↗
Approaches: CBT & mindset · Pacing
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2022 | ME/CFS after COVID and antibiotic-resistant pneumoniacfs from covid/antibiotic resistant pneumonia same timeIn context ↗ | Moderate | |
| 2025-03-03 | slowly getting better with rest and pacingi'm grateful i'm getting slowly better over time so i'm not eager to push myself into more severityIn context ↗ | Mild | Pacing and the energy envelope |
| 2025-07-22 | moved from moderate to mildmild now from moderate! grateful to have made some progress.In context ↗ | Mild | Graded exercise therapy (GET) |
| 2025-09-09 | returned to almost baseline with graded activity and resti have returned to almost baseline from moderate with graded "activity" therapy (not! excersize.)In context ↗ | Near normal | Graded exercise therapy (GET) |
| 2025-10-07 | active flare-up lasting several daysi am in active flare up right now and have felt sick for days but its been a while since i haveIn context ↗ | Mild | |
| 2025-10-30 | about 95% of baseline; steroid nasal spray helps a lothelps me a lot too. i got mine from covid and that space in the sinuses is probably a good viral reservoirIn context ↗ | Near normal |
Adverse events
- Melatonin“melatonin makes me SO groggy unfortch!” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
if i do end up doing one i rest as though i am sure i'll have pem even if i feel healthy
In context ↗ - Brain fog
any inkling of PEM like brain fog i stop drop and roll into resting
In context ↗ - Sleep problems
when i was in active illness i would sleep 12-13 (!) hours and my watch would record maybe 30 minutes of deep sleep
In context ↗ - Flu-like symptoms
i have chronic "sick blood" feeling in my head when i flare up
In context ↗ - Headaches & migraine
fatigue like im made of lead, oversleeping, flu like feelings/sick blood/feverish feeling with no fever, headaches
In context ↗
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