Moderate-severe PEM with long COVID, now much better after a third infection
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Sep 2026
In their words
- Condition: Long COVID
Long covid started July 2022.
In context ↗ - At worst: Severe
4 years LC with severe PEM for the first 3.
In context ↗ - Now: Much better
I would say I'm about 85% recovered, and though there are a lot of factors, LDN has been significant for me.
In context ↗ - Began after: COVID
Long covid started July 2022.
In context ↗
Read from 7 of their posts and comments; links to the 6 this page draws on
Summary
Dew 36167 has had long COVID since July 2022, with moderate-severe PEM for the first two and a half to three years. A third COVID infection in November brought sudden improvement, and from January 2025 activity tolerance slowly rose, though a bad flare-up in August 2025 showed they were still fragile. Low-dose naltrexone (0.4 mg) shortened flare-ups; by September 2026 they rated themselves about 85% recovered, still careful with activity and planning a working holiday in France.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Not said
I paced very well
In context ↗ - anti-inflammatory, balanced diet · Not said
ate an anti-inflammatory, balanced diet
In context ↗ - movement · Not said
got in some movement to help with inflammation (as much as I could without experiencing symptoms)
In context ↗ - slowly reintroducing exercise · Helped
I have been very slowly reintroducing exercise and for the most part, it's going great. No flare-ups, no signs of PEM.
In context ↗ - carbs during exercise · Not said
I have to take in a lot of carbs during exercise
In context ↗ - LDN · Helped a lot
LDN (.4mg) has been a huge help at shortening the duration of my flare-ups. ... though there are a lot of factors, LDN has been significant for me
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 | After |
|---|---|---|---|
| July 2022 | long COVID began, with moderate-severe PEM for the first yearsLong covid started July 2022.In context ↗ | Severe | |
| November 2024 | third COVID infection brought sudden improvementsit was catching covid for the 3rd time in November that caused me to see sudden improvementsIn context ↗ | Moderate | |
| January 2025 | activity tolerance began increasing, flare-ups less intenseAround January 2025, I started noticing that my tolerance to activity was increasing.In context ↗ | Moderate | |
| 2025 | able to exercise again, including long bike ridesI was able to exercise again, even moderate-intense exercise for 2-3 hours at a timeIn context ↗ | Mild | |
| August 2025 | big flareup they set off themselvesI am currently in a bad flareup, but it is my first bad flareup this year and my own fault for setting it off.In context ↗ | Moderate | |
| 2026-07-16 | doing a lot better, somewhat active if carefulI'm doing a lot better and can be somewhat active as long as I am really careful, but a long way from having my life back.In context ↗ | Mild | Low-dose naltrexone |
| 2026-09-30 | about 85% recovered, LDN significantI would say I'm about 85% recovered, and though there are a lot of factors, LDN has been significant for me.In context ↗ | Mild | Low-dose naltrexone |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I am currently in a bad flareup, but it is my first bad flareup this year and my own fault for setting it off.
In context ↗ - POTS & dysautonomia
I suddenly get nauseous, super light headed, my legs feel empty and I cling onto consciousness.
In context ↗ - Gut problems
I suddenly get nauseous
In context ↗ - Brain fog
my symptoms during my "good" periods (like headaches, tremors, and brain fog) were improving
In context ↗ - Muscle weakness
my legs feel empty
In context ↗
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