ME/CFS
Somewhat betterIll 21 years before improving or writing
ME/CFS for over 20 years and insomnia, somewhat better after acceptance and small goals
- Condition
- ME/CFS
- At worst
- Not stated
- Ill before improving or writing
- 21 years
- Last post
- Aug 2026
In their words
- Now: Somewhat better
You know what helped a little? Admiring I have an illness that I probably won't recover from and trying to make small improvements that I know I can achieve.
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
Diagnosed with ME at 12 after a viral infection, they have been ill for over 20 years, unmedicated for ME. Years of 'change your attitude' approaches, they say, left them worse; accepting the illness and aiming for small achievable improvements helped a little. Quetiapine did not ease their insomnia and omeprazole only slightly helped gut issues.
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What they tried
Also tried
Omeprazole· HelpedQuetiapine· No change‘change your attitude/be positive’ approaches· Worsetherapy· Worsepacing· Not saidZopiclone· Not saiddiazepam· Not said
Their words about each treatment
- Omeprazole · Helped
prescribed Omeprazole. Helps a little, but still have gut issues.
In context ↗ - ‘change your attitude/be positive’ approaches · Worse
i went through countless ‘change your attitude/be positive’ approaches ... I. Got. Worse.
In context ↗ - pacing · Not said
no matter how much I try pacing, I always end up pushing myself more than I can do and making things worse
In context ↗ - therapy · Worse
I also crashed horribly after therapy
In context ↗ - Quetiapine · No change
I was prescribed Quetiapine, to help with mental health disorders ... They lied.
In context ↗ - Zopiclone · Not said
I’ve been prescribed Zopiclone and diazepam in the short term.
In context ↗
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| during years of trying to improve | got worse after years of ‘change your attitude/be positive’ approachesI did everything they asked of me for YEARS. I. Got. Worse.In context ↗ |
| 2026-06-27 | accepted the illness and aimed for small achievable improvements, which helped a littleYou know what helped a little? Admiring I have an illness that I probably won’t recover from and trying to make small improvements that I know I can achieve.In context ↗ |
Adverse events
- “I did everything they asked of me for YEARS. I. Got. Worse.” In context ↗ Made symptoms worse
- CBT and psychotherapy“I also crashed horribly after therapy” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I also crashed horribly after therapy
In context ↗ - Gut problems
Helps a little, but still have gut issues
In context ↗ - Sleep problems
it should also help with insomnia
In context ↗ - Anxiety & low mood
I was prescribed Quetiapine, to help with mental health disorders
In context ↗