Severe ME/CFS at times, now much better with LDN and pacing
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jun 2026
In their words
- At worst: Severe
I was severe and now am moderate/light.
In context ↗ - Now: Much better
I was on disability for 18 months and now I’m employed and work full time. I’m on the mild side
In context ↗
Read from 15 of their posts and comments; links to the 12 this page draws on
Summary
Marsh 20784 had ME/CFS before 2020, was severe at times, and spent 18 months on disability. By late 2025 they worked full time and rated themselves mild, later moderate/light, crediting medication (LDN), microdosing plant medicines, a Mediterranean diet, pacing with naps and rest, and controlling their environment; a vagus nerve stimulator was still unproven. Childhood insomnia is managed with Xanax, taken for about 12 years. They later took GLP-1 drugs for pre-diabetes.
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What they tried
What they credit
Also tried
Their words about each treatment
- coconut water · Not said
I just started drinking as an alternative to water, and for electrolytes. ... For me, it’s an effective way to digest potassium.
In context ↗ - melatonin · No change
I take it (cause why not) but it hasn’t been effective for me.
In context ↗ - ambien and other medicated sleep aids · Worse
I’ve tried medicated sleep aids (ambien etc) and they just keep me up and then I’m groggy.
In context ↗ - xanex (Xanax) · Helped
I take 1mg before bed. ... I can feel when it kicks in — not in a “party” sense, it just allows me to get sleepy.
In context ↗ - magnesium · Not said
Re: supplements - zero clue if they’re effective or not. def don’t have issues if I skip them.
In context ↗ - Visible · No change
I fully forgot I even had a subscription to it ... That’s to say it didn’t work for me.
In context ↗ - Apple Watch · Helped
I have an Apple Watch and it helps with heart rate and pacing I’ve figured out myself along with medication.
In context ↗ - pacing / naps / rest before events · Helped
Pacing is critical for me. ... - pacing / naps / rest before events etc
- LDN · Helped
I was severe and now am moderate/light. ... - LDN
In context ↗ - Mediterranean diet · Helped
Trying to focus on anything that can reduce neurological inflammation. ... - Mediterranean diet
In context ↗ - control of my environment · Helped
- control of my environment (all smart lights, sleep mask, white noise machine, headphones, etc)
In context ↗ - vagus nerve stimulator · Not said
- testing out a vagus nerve stimulator but TBD if it’s effective (can take up to 30 days to show effects)
In context ↗ - microdosing “plant medicines” · Helped
- also microdosing “plant medicines” ... has seemed to be helpful but difficult to quantify
In context ↗ - knitting and Lumenate neural entrainment · Helped
I cannot meditate in the literal sense but find meditation through other methods ... having a mechanical (like knitting) or visual (like neural entrainment) helps me get to a meditative state for the benefits
In context ↗ - GLPs · Helped
I had gotten pre-diabetic so I went on GLPs a few years ago. It helps me maintain what I was prior to getting sick.
In context ↗
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. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| before 2020 | ME/CFS onsetI had CFS prior to 2020.In context ↗ | Not stated | |
| — | severe ME/CFS, 18 months on disabilityI was severe and now am moderate/light.In context ↗ | Severe | |
| at CFS diagnosis | felt 100% better after diagnosis; wore off after a few weeksWhen I was diagnosed with CFS the opposite happened, felt 100% better, but that wore off after a few weeks.In context ↗ | Not stated | |
| 2025-10-31 | back in full-time work, mild sideI was on disability for 18 months and now I’m employed and work full time.In context ↗ | Mild | Low-dose naltrexone |
| 2025-12-16 | severe to moderate/light with medication, diet and pacing | Mild |
Adverse events
- “A side effect of the medication is “vivid dreams.” My doctor cautioned me about it, and I didn’t think too much - but there’s been a significant difference and I’m borderline lucid dreaming now” In context ↗ Side effects
- “I’ve tried medicated sleep aids (ambien etc) and they just keep me up and then I’m groggy” In context ↗ Insomnia from treatment
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I’ve had insomnia since I was a kid.
In context ↗ - Anxiety & low mood
anxiety was the causing me to stay up
In context ↗
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