ME/CFS moderate with brain fog and PEM, now stable mild after prednisone and regimen
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 4 years
- Last post
- Jun 2026
In their words
- Condition: ME/CFS
I'm in the mild to medium range and have been driving for 20 years, also during 4 years of worsening ME.
In context ↗ - At worst: Moderate
I've managed to break a fast declining moderate by disconnecting from family and previous life into living on my own
In context ↗ - Now: Much better
I'm at a pretty stable minor level now, slowly working upwards while trying to avoid missteps.
In context ↗
Read from 22 of their posts and comments; links to the 12 this page draws on
Summary
Marsh 19255 described ME/CFS worsening over four years, then a fast decline to a moderate level with pain, noise sensitivity, PEM, brain fog and heart thumping. In 2024 they moved to live alone, quit sugar, took a week of prednisone and began low-dose naltrexone about 2 mg a day. They credited prednisone with lifting the brain fog and the regimen with reaching a stable mild level, with electrolyte water a foundation for stability 2.5 years later.
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What they tried
What they credit
Their words about each treatment
- hydration drinks, electrolyte powder, healthy salts (Sodium, Potassium and Magnesium) · Helped
the water thing has been a foundation for my stability.
In context ↗ - pacing and frequent resting · Helped
manage pacing and appropriate physical and mental challenges with very frequent resting
In context ↗ - skipping sugar · Helped a lot
got immensly better when I quit.
In context ↗ - broad spectrum aminos · Helped
keep my muscles managing to function pretty well, and keep the energy/sugar cravings on a manageable level
In context ↗ - Creatine · Helped
also Creatine, Carnitine, Arginine, D-Ribose, Glutamine
In context ↗ - anti-inflammatory painkillers · Helped
The ordinary pain killer anti-inflammatory effect did some life saving for my brain, but that was very marginal in comparison.
In context ↗ - Prednisone / Cortisone · Helped a lot
The brain fog is lifting incredebly much from that.
In context ↗ - LDN · Helped
LDN is keeping my bottom level a good bit higher than before. Has worked fine for a month so far.
In context ↗
Approaches: POTS medication · Amino acids and carnitine · Diet · Other drugs and medicines · Pacing · Supplements
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 4 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 | After |
|---|---|---|---|
| onset | ME/CFS onsetalso during 4 years of worsening MEIn context ↗ | Not stated | |
| 2024-03-03 | fast decline, in the mild to medium rangeI'm in the mild to medium range and have been driving for 20 years, also during 4 years of worsening ME.In context ↗ | Moderate | |
| 2024-06-08 | reached a stable minor level after moving out, prednisone and LDNI'm at a pretty stable minor level now, slowly working upwardsIn context ↗ | Mild | Low-dose naltrexone |
| 2026-06-01 | still stable, electrolyte water as a foundationthe water thing has been a foundation for my stabilityIn context ↗ | Mild | Salt, electrolytes and fluids |
Adverse events
- Corticosteroid pulses“although I did get some reactions when I did a week of 5 mg of Prednisone.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I'm more into PEMing easily if I don't get my daily doses of the broad spectrum of aminos
In context ↗ - Brain fog
The brain fog is lifting incredebly much from that.
In context ↗ - Light & noise sensitivity
Noice sensitivity and resting mental activity is taken care of by listening to some interesting stuff on YouTube with bluetooth plugs in my ears.
In context ↗ - Heart symptoms & palpitations
If my heart starts thumping hard at a medium pulse like 120, that's a strong exertion signal
In context ↗ - Pain & fibromyalgia
being in pain, irritated and less focused anyway isn't really better
In context ↗ - Gut problems
which would make me quite bloated in the later half of the day
In context ↗ - Anxiety & low mood
my emotional range is usually a flat tire
In context ↗
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