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ME/CFS Mild → much betterIll 10 years before improving or writingNeeds ongoing treatment

ME/CFS with weekend crashes, now much better with low-dose naltrexone

Condition
ME/CFS
At worst
Mild (working or studying, with limits)
Ill before improving or writing
10 years
Last post
Sep 2026
In their words
  • Condition: ME/CFSI've had CFS since Jan 2016. In context ↗
  • At worst: Mildlately, I've been more or less able to work 5 days a week (from my laptop at home) and then crash out on the weekend In context ↗
  • Now: Much betterI'm so much more functional than I was at the beginning. In context ↗
Read from 10 of their posts and comments; links to the 7 this page draws on

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Summary

Ill since January 2016, they could work five days a week from home but crashed every weekend, and in 2023 they suspected an Indian meal plus stress set off a bad flare. Low-dose naltrexone from Harpal Clinic, 4.5 mg sublingual at night, significantly reduced their fatigue and brain fog; supplements and gut triggers also helped. Ten years in they work from home, see friends once or twice a month and call themselves much more functional than the start.

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What they tried

Their words about each treatment
  • working out all of my food intolerances · No changeI spent a couple of years trying to work out all of my food intolerances, but I could never get to a state where I wasn't having gastrointestinal symptoms In context ↗
  • LDN (low dose naltrexone) · Helped a lotI've found it to be incredibly helpful. ... it seems to significantly reduce my brain fog. In context ↗
  • rest/meditate twice a day · HelpedI try to rest/ meditate twice a day. ... I often don't have time for this, but then I'm shattered all week In context ↗
  • DXM (Robitussin) · WorseIt has made me feel extremely anxious, agitated and distressed! It is quite powerful. In context ↗
  • HRT · Not saidI had mecfs for years before I started HRT. ... I'm still on HRT. In context ↗
  • supplements · HelpedI've found supplements that genuinely help. In context ↗
  • stimulants (including caffeine) · WorseI've experimented a lot with stimulants and I'm now confident they're a bad idea In context ↗

Their path

Very severeSevereModerateMildNear normalRecovered8 y9 y10 y

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 7.3 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
WhenWhat happenedWhere they wereAfter
January 2016ME/CFS onsetI've had CFS since Jan 2016. In context ↗Not stated
2023able to work five days a week from home, crashing at weekendsI've been more or less able to work 5 days a week (from my laptop at home) and then crash out on the weekend. In context ↗Mild
May 2023bad flare-up after an Indian meal and stressFrom Friday afternoon until now (Monday) I've been in a really really bad CFS flare-up. In context ↗Moderate
October 2024LDN reduced their fatigueLDN helps me. ... It's quite effective to be honest. In context ↗MildLow-dose naltrexone
January 2026ME/CFS more or less under controlI've got it more or less under control -- i can work from home and I can go out with friends about once or twice a month In context ↗MildLow-dose naltrexone
September 2026ten years in, more functional than at the start10 years in, still experimenting. It's helping. In context ↗MildLow-dose naltrexone

Adverse events

  • “Subsequent days I had a bit more, 7.5ml one day and 10ml today. It has made me feel extremely anxious, agitated and distressed!” In context ↗ Mood or psychiatric effects

Symptoms mentioned

Their words about their symptoms
  • Post-exertional malaiseI've been more or less able to work 5 days a week (from my laptop at home) and then crash out on the weekend. In context ↗
  • Brain fogit seems to significantly reduce my brain fog In context ↗
  • Gut problemsI've found out a lot of my gastrointestinal triggers. In context ↗

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