ME/CFS
No benefitIll for 13 months
ME/CFS with PEM and brain fog; strict rest and sensory deprivation brought no improvement
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- 13 months
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
Suspected ME/CFS ~13 months in.
In context ↗ - Now: No benefit
I do not notice that I have gotten any better, in fact, I feel like I may be worse.
In context ↗ - Began after: another virus
I'm 19 and have been unwell for around 13 months following a viral/gastro-like illness.
In context ↗ - Says they never had: Pain & fibromyalgia
I can still move my body without any pain or resistance.
Read from 9 of their posts and comments; links to the 5 this page draws on
Summary
A 19-year-old became unwell with a viral/gastro-like illness and 13 months later suspected ME/CFS, with PEM, brain fog, dizziness, headaches, gut reactions and palpitations; they stopped work and deferred university to pace. A breakup around month 13 triggered a rolling crash with insomnia and palpitations; they tried strict rest and sensory deprivation. A household flu then hit them more mildly than their family.
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What they tried
Also tried
Their words about each treatment
- pacing · Helped
I got rid of the adrenaline that plagued me for the first few days ... My sleep has improved with this pacing
In context ↗ - sensory deprivation / lying horizontal · No change
I do not notice that I have gotten any better, in fact, I feel like I may be worse
In context ↗ - lactase · Not said
I sometimes use lactase for dairy
In context ↗ - FODZYME · Not said
have tried FODZYME
In context ↗ - avoiding lactose, fructans and gluten · Not said
I've been avoiding these
In context ↗ - tamiflu · Helped
I have actually had the easiest flu out of everyone in my family ... I did take the tamiflu before my symptoms truly set in
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 |
|---|---|---|
| about 13 months before August 2026 | viral/gastro-like illness followed by post-exertional symptomsI'm 19 and have been unwell for around 13 months following a viral/gastro-like illness.In context ↗ | Mild |
| eight months after onset | started university part-time and struggled walking around campusI increasingly struggled with walking around campus, needing to sit down frequently, and dizziness became more noticeable.In context ↗ | Moderate |
| 2026-09-05 | crashed after a breakup, needing about 15 hours a day horizontalSo I spent around 15 hours horizontal, only walked to the kitchen and bathroom for essentialsIn context ↗ | Severe |
Adverse events
- Radical rest“I find that lying there doing nothing spikes my anxiety, and makes my heart thump occasionally.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsPOTS & dysautonomiaPost-exertional malaiseSleep problems
Their words about their symptoms
- Post-exertional malaise
I began experiencing what I now suspect is PEM, alongside fatigue, brain fog
In context ↗ - Brain fog
Significantly worse brain fog
In context ↗ - POTS & dysautonomia
dizziness/possible orthostatic intolerance
In context ↗ - Headaches & migraine
Headaches, especially after looking at screens
In context ↗ - Heart symptoms & palpitations
Occasional rapid heartbeat
In context ↗ - Flu-like symptoms
occasional sore throats
In context ↗ - Sleep problems
by day 5 I was already having terrible insomnia
In context ↗ - Gut problems
I also have significant gastrointestinal issues and currently react poorly to lactose, fructans and gluten.
In context ↗ - Anxiety & low mood
the anxiety just keeps getting worse
In context ↗