ME/CFS
Moderate → no benefitIll for 5 years
ME/CFS worsening from mild to moderate, with crashes and no treatment giving relief
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 5 years
- Last post
- Apr 2025
In their words
- Condition: ME/CFS
I have had ME for over 5 years
In context ↗ - At worst: Moderate
I went from mild to moderate/severe-ish now.
In context ↗ - Now: No benefit
getting worse regardless
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
An 18-year-old autistic user with PTSD and chronic depression had had ME for over five years, diagnosed only in February 2025, and had gone from mild to moderate or worse. They described post-exertional crashes after showers or appointments, losing friends, and worsening suicidal thoughts. Therapies and psychiatric appointments since age 10 did little and caused more trauma. No treatment helped and they were getting worse.
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What they tried
Also tried
Their words about each treatment
- therapy · No change
the therapy did very little, even with the nicest, most genuine therapist I had seen
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| onset | ME began; mild at firstI went from mild to moderate/severe-ish now.In context ↗ | Mild |
| 2025-04-21 | declined from mild to moderate/severe-ish; bedbound after showers and appointmentsI went from mild to moderate/severe-ish now. ... I want to live instead of bedrotting every time after I take a fucking shower or going to another doctor's appointment.In context ↗ | Moderate |
Adverse events
- CBT and psychotherapy“I've had treatment and psych appointments since I was 10 years old. They only caused more trauma, the therapy did very little” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I try to get my shit together and get pushed into a fucking flare.
In context ↗ - Anxiety & low mood
I'm getting more and more suicidal, again.
In context ↗