ME/CFS
Moderate → no benefitIll for 1 yearNeeds ongoing treatment
ME/CFS PEM crash, walker and sick leave; pacing advice, now moderate and off work
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 1 year
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I have POTS and ME
In context ↗ - At worst: Moderate
I’m pretty much just manoeuvring from my bed to my couch and getting up only to use the washroom or prepare snacks/reheat meals
In context ↗ - Now: No benefit
I’ve gone from being mild ME to now moderate ME (and off of work 😞), because I’ve pushed myself too hard for almost a year.
In context ↗
Read from 14 of their posts and comments; links to the 8 this page draws on
Summary
Summit 91266 developed ME around 2025 and considered themselves mildly affected, working with home accommodations. A May 2026 trip to visit a dying relative triggered an eight-week PEM crash, the worst yet; they used a walker and went on sick leave. Pacing advice from an ME specialist physiotherapist helped them back to mild, but further overexertion lowered their baseline to moderate and they remained off work.
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What they tried
Also tried
Their words about each treatment
- pacing · Helped
I worked with a physiotherapist who specializes in ME management, and her advice was helpful.
In context ↗ - Apple Watch active calorie monitoring and daily 1-5 symptom ratings · Helped
It was by monitoring my daily active calories and how it correlates with PEM crashes that my physiotherapist was able to determine a recommendation for pacing my activity.
In context ↗ - walker / rollator · Helped
I started using a walker about two weeks ago ... This allows me to STAY active
In context ↗ - rolling stool for the kitchen · Not said
I do have a rolling stool for my kitchen so that I don’t stand when prepping meals and doing dishes.
In context ↗ - therapist specialising in chronic illness · Helped
connecting with a therapist who also specifically works with a population of people who are managing chronic illness ... has been really helpful
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 | After |
|---|---|---|---|
| 2025 | developed ME after neurodivergent burnoutit’s only been a little over a year since I’ve developed MEIn context ↗ | Mild | |
| May 2026 | eight-week PEM crash after trip to visit dying relative; started using walkerLast time I visited him in May, I had a subsequent 8 week PEM crash and “graduated” to moderate level and started using mobility aids.In context ↗ | Moderate | |
| August 2026 | recovered from crash, no longer needed rollatorI’m not needing the rollator now that my PEM is largely resolved, and I’m back to my “mild” status thankfully.In context ↗ | Mild | Pacing and the energy envelope |
| September 2026 | overdid it and baseline stayed loweredbaseline is still lowered relative to before going on 3.5 months. I’ve gone from mild to moderate.In context ↗ | Moderate | |
| October 2026 | still moderate and off workVisiting him involves travel out of province and flying, which is entirely beyond my current capacity.In context ↗ | Moderate |
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
I induced my worst PEM crash yet
In context ↗ - Brain fog
exhaustion, leg and hip pain, nausea, headaches, weakness, brain fog
In context ↗ - POTS & dysautonomia
I also have migraine and POTS
In context ↗ - Headaches & migraine
13-22 days a month in severe migraine
In context ↗ - Pain & fibromyalgia
exhaustion, leg and hip pain
In context ↗ - Gut problems
gastrointestinal symptoms, nausea
In context ↗ - Muscle weakness
my legs feel heavy like lead
In context ↗ - Anxiety & low mood
sensory overwhelm and anxiety
In context ↗ - Flu-like symptoms
I feel like I’m coming down with the flu
In context ↗ - Breathlessness
a sense of being out and of breath during exertion
In context ↗ - Neuropathy & tingling
a bit of this buzzing sensation through my body
In context ↗