Very severe ME/CFS, somewhat better with cromolyn and mast cell stabilisers
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- Not stated
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
Turns out this type of thing sends me into PEM quite easily.
In context ↗ - At worst: Very severe
I’m very severe, that shit throws me into adrenaline and PEM instantly.
In context ↗ - Now: Somewhat better
I am starting to improve and coming out of severe malnutrition because I started eating food again last month. I can speak a little again too.
In context ↗
Summary
Crane 60398, non-binary and autistic, has very severe ME/CFS and lives in supported housing, unable to fully care for themselves and often in rolling PEM. Resting helped only slightly; half a cromolyn regimen, all their insurance covers, plus other mast cell stabilisers for MCAS brought some improvement, and they began eating again after severe malnutrition. They can speak a little again but remain very severe.
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What they tried
What they credit
Also tried
Their words about each treatment
- resting · Helped
I am feeling a little bit better, so I think resting has been helping slightly.
In context ↗ - therapy · Not said
I also didn't decline mental health treatment - I'm in therapy after all
In context ↗ - pace · Not said
I’m exhausted, as we all are, and struggling to pace.
In context ↗ - fluids · No change
Got emergency services, gave me fluids, sent me home. The cycle repeats.
In context ↗ - Cromolyn · Helped
This is thanks to being in half a Cromolyn regimen (that’s all insurance will cover..) and other mast cell stabilizers.
In context ↗
Approaches: Antihistamines & MCAS
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 |
|---|---|---|---|
| April 2025 | bedbound, unable to feed or care for self, rolling PEMI'm unable to fully care for myself ... The staff here can't help me with hygiene and stuff like that.In context ↗ | Very severe | |
| 2025-04-23 | slight improvement from resting; still bedboundI am feeling a little bit better, so I think resting has been helping slightly.In context ↗ | Very severe | Radical rest |
| 2026-09-26 | eating again, coming out of malnutrition, speaking a littleI am starting to improve and coming out of severe malnutrition because I started eating food again last month. I can speak a little again too.In context ↗ | Very severe | Cromolyn (Gastrocrom, Nalcrom) |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I’m in rolling PEM because I can’t get off my phone.
In context ↗ - Brain fog
I think I was in a really bad crash and that really affected my cognitive ability.
In context ↗ - Light & noise sensitivity
I'm even able to tolerate watching YouTube videos in black and white it seems.
In context ↗ - Mast cell (MCAS) & allergies
ChatGPT helps me research new food to try (MCAS).
In context ↗ - Anxiety & low mood
It’s so lonely and extremely depressing.
In context ↗
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