ME/CFS managed at 80% capacity, then relapsed after reinfection to 700 steps and brain fog
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 32 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I was diagnosed with CFS/ME 32 years ago.
In context ↗ - At worst: Severe
now manage about 700 per day
In context ↗ - Now: Relapsed
Long Covid (LC)/relapse Dec 2025.
In context ↗ - Says they never had: POTS & dysautonomia
Don't believe I have POTS.
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
A 62-year-old woman diagnosed with ME/CFS in 1994 had managed symptoms and worked, parented and grand-parented part-time for about 20 years, and managed about 80% capacity for at least the last decade. After two viral episodes in late 2025 she was diagnosed with Long Covid; when she tested positive again in mid-2026, about five months later, she was cut to about 700 steps a day and had weakness and brain fog. She awaited an Australian Long Covid clinic appointment while taking LDN.
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What they tried
Also tried
Their words about each treatment
- Vit B shots into large muscle · Helped
my GP at the time offered Vit B shots into large muscle (drop your pants, Shirley). Great energy buzz for a few days. I should try that again!
In context ↗ - carefully manage my symptoms · Not said
I've had about 20 years til now where I was able to carefully manage my symptoms and work/parent/grand-parent part-time.
In context ↗ - LDN · Not said
Have been taking LDN (GP prescribed on current Australian LC guidelines).
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. The first step with a time is 31.4 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 1994 | diagnosed with ME/CFSCFS/ME diagnosed 1994.In context ↗ | Not stated |
| 2015-2025 (last 10 years before the 2025 relapse) | symptoms managed at about 80% capacity, working and grand-parenting part-timewas managing at 80% capacityIn context ↗ | Mild |
| late 2025 (Nov/Dec) | two viral episodes brought Long Covid/relapse, no longer managing to be normalafter two viral episodes in Nov/Dec last yearIn context ↗ | Mild |
| about 5 months later (2026) | caught covid again and dropped to about 700 steps a dayContracted covid again 5 months laterIn context ↗ | Severe |
| 2026-06-30 | tested positive for COVID-19 again, with weakness and brain fogToday I have tested positive to COVID-19 again.In context ↗ | Severe |
| 2026-10-16 | waiting for an Australian Long Covid clinic appointment, taking LDNI have an appointment in 2 weeks' time with an Australian Long Covid clinic.In context ↗ | Severe |
Symptoms mentioned
Their words about their symptoms
- Brain fog
Long long cfs/me brain fog
In context ↗ - Muscle weakness
current physical weakness and mental fog
In context ↗