Profoundly severe ME/CFS, now much better with saline infusions and a caregiver
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I know we don't see them in the cfs community very often ... I was pretty solidly in the severe category.
In context ↗ - At worst: Very severe
I used to be profoundly severe, now I'm moderate-severe.
In context ↗ - Now: Much better
A few months ago, I could go out once a week MAX and that was typically used for a medical appointment ... The last month or so, I've been able to go out *2-3x* a week!!!!!
In context ↗
Read from 11 of their posts and comments; links to the 6 this page draws on
Summary
Sparrow 19940 was profoundly severe with ME/CFS and spent several months in hospital before moving across the country for family care. By October 2026 they were moderate-severe, going out two to three times a week instead of once and still foggy and exhausted. They credited a paid caregiver, weekly saline infusions for POTS, cutting contact with a draining person, and CPAP for sleep apnoea, and also reported moderate-severe MCAS.
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What they tried
What they credit
Also tried
Their words about each treatment
- TPN (intravenous nutrition) · Helped
TPN (intravenous nutrition) for a few weeks when my stomach became completely paralyzed.
In context ↗ - Safe, mold-free, quiet housing · Helped
Safe, mold-free, quiet housing
In context ↗ - A consistent caregiver · Helped a lot
getting insurance to cover a caregiver ... I am able to eat much more consistently
In context ↗ - weekly saline infusions · Helped a lot
infusions where life saving with POTS which obviously translated to helping with ME
In context ↗ - Using a power wheelchair 24/7 · Helped
Using a power wheelchair 24/7
In context ↗ - treating my sleep apnea · Helped
just a cpap! I did a home study as well
In context ↗ - move across the country · Not said
I had to move across the country so my family could take care of me
In context ↗ - going no contact with a toxic person · Helped a lot
going no contact with a toxic person in my life who was draining me. It was really sad but I saw a BIG improvement
In context ↗
Approaches: POTS medication · Diet · Mould avoidance
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 |
|---|---|---|
| — | profoundly severe ME/CFSI used to be profoundly severe, now I'm moderate-severe.In context ↗ | Very severe |
| — | another person's actions led to months in hospitalthat person’s actions led me to get so sick that I was hospitalized for several monthsIn context ↗ | Very severe |
| a few months before October 2026 | out once a week, mostly for appointments; caregiver, saline infusions, TPN, mould-free housing, power chair, sleep apnoea treatmentA few months ago, I could go out once a week MAX and that was typically used for a medical appointment. I was pretty solidly in the severe category.In context ↗ | Severe |
| 2026-10-25 | out 2-3x a week, bus trips and a festival, hike in a power chair, after caregiver, no contact with a draining person, saline infusions and CPAPThe last month or so, I've been able to go out *2-3x* a week!!!!!In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
Weekly saline infusions to treat POTS
In context ↗ - Mast cell (MCAS) & allergies
I also have moderate-severe MCAS.
In context ↗ - Sleep problems
Treating my sleep apnea
In context ↗ - Brain fog
still feel pretty horrible and exhausted and foggy
In context ↗ - Gut problems
TPN (intravenous nutrition) for a few weeks when my stomach became completely paralyzed
In context ↗
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