Severe ME/CFS, years they can't remember, much better with pacing and vegan diet
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Aug 2024
In their words
- Condition: ME/CFS
Yeah I used to be severe to where I don't remember whole years but I guess it's medium now.
In context ↗ - At worst: Severe
I used to be severe to where I don't remember whole years
In context ↗ - Now: Much better
I was classed as severe by a specialist(better now)
In context ↗ - Says they never had: Muscle weakness
There's nothing wrong with my muscles
Read from 13 of their posts and comments; links to the 9 this page draws on
Summary
Zephyr 70515 was classed as severe by a specialist, with years they could not remember and forced trips into town that devastated their health. Later they called themselves 'medium' then 'better now', crediting pacing, a clean vegan diet, moving out, mould removal and caffeine. By 2023 they could take short hikes, dance, ride or swim when up to it, though in 2024 they relied on coffee and rest and found eating clean too much effort.
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What they tried
What they credit
Also tried
Their words about each treatment
- Exercise (short hikes, dancing, Pilates, horse riding, swimming) · Worse
I've always been able to exercise but obvs it backfires a lot, with PEM.
In context ↗ - pacing · Helped
This worked for me ... Years of pacing.
In context ↗ - clean vegan diet · Helped
Significantly improved my diet ... Clean vegan helped cfs(but bad in other ways)
- minimised sensory annoyances · Helped
Minimised sensory annoyances.
In context ↗ - moved out · Helped
Moved out (living w ppl exhausted me).
In context ↗ - got rid of mold · Helped
Got rid of mold (didn't know until then).
In context ↗ - lots of outdoor time · Helped
Lots of outdoor time.
In context ↗ - coffee / caffeine · Helped
This worked for me ... Caffeine for a clear head.
In context ↗ - fixing nutrient deficiencies · Helped
Same but it took too much energy so had to stop
In context ↗ - holding breath · Helped
For me just holding breath helps
In context ↗ - energy drinks (Monster / Red Bull) · No change
nothing happens
In context ↗ - rest · Helped
coffee, fall/winter, rest, good company, eating clean
In context ↗
Approaches: Diet · Mould avoidance · Pacing · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. 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 |
|---|---|---|---|
| — | Severe ME/CFS, unable to remember whole yearsI used to be severe to where I don't remember whole yearsIn context ↗ | Severe | |
| 2022-06-10 | Said they were now 'medium' rather than severeI guess it's medium nowIn context ↗ | Moderate | Pacing and the energy envelope |
| 2023-06-30 | Reported being better nowI was classed as severe by a specialist(better now)In context ↗ | Mild | |
| 2024-08-17 | Recalled sleeping 10-16 hours when severe, implying no longer severewhen i was severe, 10-16In context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
obvs it backfires a lot, with PEM
In context ↗ - Brain fog
I don't remember whole years
In context ↗ - Sleep problems
if i have something tiring on the schedule or i slept bad i also have a redbull
In context ↗ - Light & noise sensitivity
Minimised sensory annoyances.
In context ↗
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