Very severe ME/CFS, now mostly bedridden, much better after pacing and diet changes
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2025
In their words
- Condition: ME/CFS
There is no cure for ME
In context ↗ - At worst: Very severe
after I had worked for around 3 years which completly ruined my health (went from mild to very severe)
In context ↗ - Now: Much better
After going there for a few years I am now severe/moderate which I am super happy about. Still mostly bedridden though but I can leave the house too though but needs to rest 2-7 days after
In context ↗
Read from 1 of their posts and comments; links to the one this page draws on
Summary
Starling 37596 had mild ME/CFS that worsened to very severe after working for about three years. They then attended an ME-center for a few years, where pacing, diet changes, gentle training and heart/POTS medication helped. They are now severe/moderate and mostly bedridden, though they can leave the house and need two to seven days of rest afterwards.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped a lot
they helped a lot with pacing, diets, training person
In context ↗ - low-moderate carb, no dairy, antiinflammatory, low histamine diet · Helped a lot
Diet: Good with low-moderate carb diet, no dairy/milk protein, antiinflammatory, low histamine
In context ↗ - training (squats) · Helped
I can actually squat 20 kg now which is more than I had hoped for and some other physical activities feels less heavy to do now.
In context ↗ - grounding and meditation · Helped
Do a lot of grounding and meditation to "get in tune" with your body and its signals.
In context ↗ - Apple Watch and Trackuility app · Not said
I also use an Apple Watch and a pacing app called Trackuility to find my thresholds
In context ↗ - heart/POTS medicine · Helped
a doctor who referred me to a heart doctor who gave me medicin that actually helps (for my heart/POTS problems though and not ME)
In context ↗
Approaches: Diet · Exercise and activity · Mind-body practices · Pacing
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 |
|---|---|---|---|
| onset | mild MEwent from mild to very severeIn context ↗ | Mild | |
| after working around 3 years | health ruined by working; went from mild to very severewhich completly ruined my health (went from mild to very severe)In context ↗ | Very severe | |
| 2025-10-29 | now severe/moderate, mostly bedridden but can leave the houseAfter going there for a few years I am now severe/moderate ... Still mostly bedridden though but I can leave the house too though but needs to rest 2-7 days afterIn context ↗ | Severe | Pacing and the energy envelope |
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
my heart/POTS problems
In context ↗
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