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ME/CFS Mild → no benefit

Mild ME/CFS twice as bad; no improvement on amitriptyline and LDN

Condition
ME/CFS
At worst
Mild (working or studying, with limits)
Ill for
Not stated
Last post
Sep 2026
In their words
  • Condition: ME/CFSYeah CFS is a huge problem In context ↗
  • At worst: MildAnd have been thinking I'm still mild In context ↗
  • Now: No benefitit has gotten twice as bad this year and it will get worse In context ↗
Read from 1 of their posts and comments; links to the one this page draws on

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Summary

Breeze 96589 described being mild with ME/CFS, but said it had got twice as bad during the year, with a lot of work missed. After starting amitriptyline and LDN last week they were sleeping badly, and on the Monday they thought the amitriptyline made them extremely emotional and wishing for death all day; they hadn't felt like that since being very depressed, though they thought they had felt worse in their early twenties. They worried a crash would lower their baseline further.

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What they tried

Their words about each treatment
  • Amitriptyline · WorseI think the Amitriptyline made my emotions extremely bad and all I could think of was wishing death all day In context ↗
  • LDN · Not saidstarted Amitriptyline and LDN last week and wasn't getting good sleep In context ↗

Their path

Very severeSevereModerateMildNear normalRecovered

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. Dates are when they posted. What the levels mean.

Show as a table
WhenWhat happenedWhere they were
—living with ME/CFS, still mildMild
2026got twice as bad over the yearit has gotten twice as bad this year and it will get worse In context ↗Mild
2026-09-01started amitriptyline and LDN, poor sleep, missing work, very low moodstarted Amitriptyline and LDN last week and wasn't getting good sleep missing work In context ↗Mild

Adverse events

Symptoms mentioned

Their words about their symptoms
  • Sleep problemswasn't getting good sleep In context ↗
  • Anxiety & low moodI too feel this way often and I feel selfish for feeling like it In context ↗
  • Post-exertional malaiseI feel like PEM really changes your mental when it happens In context ↗

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