ME/CFS
Mild → somewhat betterIll 4 years before improving or writing
ME/CFS with brain fog and PEM, now somewhat better on low-dose naltrexone
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 4 years
- Last post
- Aug 2026
In their words
- Condition: ME/CFS
Long standing ME/CFS ~at least 4 years but likely longer
In context ↗ - At worst: Mild
my me/cfs would probably be classed as mild (doesn't feel mild to me but I'm still functioning at work)
In context ↗ - Now: Somewhat better
it's early days (1 week) but my fatigue has lifted a noticeable degree ... I have also been using DSIP for a 5-6 weeks which has brought it's own (big) improvements for me
- Began after: nothing they could name
Long standing ME/CFS ~at least 4 years but likely longer, timeline is skewed as I also have sleep apnea which feels like it predates the CFS
Read from 18 of their posts and comments; links to the 10 this page draws on
Summary
Trail 78310 has had ME/CFS for at least four years, with unrefreshing sleep, constant muscle aches, IBS, brain fog and severe post-exertional malaise, while still working 55-hour weeks and calling it mild. Low-dose naltrexone cleared most of the brain fog within a few weeks, ubiquinol eased muscle aches, DSIP made sleep refreshing and 40 Hz sound and light lifted fatigue, though it was early days and PEM hadn't yet been tested with exercise. Vitamin D worsened muscle aches.
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What they tried
Also tried
DSIP (Delta/Deep Sleep Inducing Peptide)· Helped a lotLDN· HelpedUbiquinol· Helped40 hz Sound and Light· HelpedUbiquinone· No changeReduced working hours and blocks of time off· No changeVitamin D· Worsesleep apnea machine· Not said
Their words about each treatment
- LDN · Helped
LDN cleared my brain fog, did nothing for the fatigue or pains but cleared my fog
In context ↗ - Ubiquinol · Helped
Ubiquinol - helps about 70% with the muscles aches - seems to have a short working duration
In context ↗ - Ubiquinone · No change
Ubiquinone - just started doesnt seem to be doing anything (extra) not sure if there is a "loading" phase with this one
In context ↗ - DSIP (Delta/Deep Sleep Inducing Peptide) · Helped a lot
very noticeable difference when I wake up in the morning - noticed it working after first night of using it
In context ↗ - 40 hz Sound and Light · Helped
it's early days (1 week) but my fatigue has lifted a noticeable degree
In context ↗ - Vitamin D · Worse
my muscles aches are definitely exacerbated when I take vitamin D
In context ↗ - sleep apnea machine · Not said
I also have sleep apnea and a machine
In context ↗ - Reduced working hours and blocks of time off · No change
Doing less just means I spend more time on bed.
In context ↗
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 4.1 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 |
|---|---|---|---|
| at least 4 years before Oct 2025 | long-standing ME/CFS, sleep apnoea predating itLong standing ME/CFS ~at least 4 years but likely longer, timeline is skewed as I also have sleep apneaIn context ↗ | Not stated | |
| 2025-11-13 | LDN cleared brain fogI'm about 6 weeks in and LDN has pretty much got rid of my brain fogIn context ↗ | Mild | Low-dose naltrexone |
| 2025-12-08 | ubiquinol eased muscle achesUbiquinol - helps about 70% with the muscles achesIn context ↗ | Mild | CoQ10 / ubiquinol |
| 2025-12-08 | crash after trying to jog a few hundred metresCant exercise at all as the PEMS is epically bad, lasts 3 days to 3-4 weeksIn context ↗ | Severe | |
| June 2026 | DSIP gave refreshing sleepI've been using DSIP for about 5-6 weeks with great results. I've not had a refreshing sleep for 8-9 years.In context ↗ | Mild | |
| 2026-07-08 | 40 Hz sound and light lifted fatigueit's early days (1 week) but my fatigue has lifted a noticeable degreeIn context ↗ | Mild | |
| 2026-07-23 | still improving, vitamin D worsens muscle achesmy muscles aches are definitely exacerbated when I take vitamin DIn context ↗ | Mild |
Adverse events
- “The first couple of times (started with just the sound) it gave me a stinking headache, now it just gives me a mild headache.” In context ↗ Side effects
- Vitamin D and sun exposure“my muscles aches are definitely exacerbated when I take vitamin D” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Cant exercise at all as the PEMS is epically bad, lasts 3 days to 3-4 weeks
In context ↗ - Brain fog
Brain fog comparable to being ?half drunk (without the loss of coordination etc)
In context ↗ - Sleep problems
I haven't had a refreshing sleep in years
In context ↗ - Pain & fibromyalgia
My back (muscles) and thighs constantly ache.
In context ↗ - Gut problems
Sorts 80% of my IBS(D)
In context ↗ - Neuropathy & tingling
dampens down the neuropathy in my feet
In context ↗