95% bedbound with ME/CFS for 1.5 years, somewhat better on SS-31
- 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 have long covid induced ME, which is severe and POTS
In context ↗ - At worst: Very severe
I have been 95% bed bound for 1.5 years
In context ↗ - Now: Somewhat better
I’ve noticed significant improvements in my shortness of breath and tachycardia over the last few days with SS-31
In context ↗ - Began after: COVID
I have long covid induced ME, which is severe and POTS
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
A Reddit user with long COVID–induced ME and POTS was 95% bed bound for 1.5 years. Five days into SS-31 at 20 mg daily they reported less breathlessness and tachycardia and bed exercises without PEM, though fatigue stayed severe. Rapamycin 1 mg weekly caused PEM crashes 36 hours after each dose and was stopped after two weeks, with a return to baseline each time.
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What they tried
What they credit
Their words about each treatment
- Vinpocetine · Helped
I have confirmed reduced cerebral blood flow and Vinpocetine helped me a bit.
In context ↗ - NAC · No change
NAC didn’t do anything for me.
In context ↗ - Rapamycin · Worse
it actually induced PEM crashes 36 hours post dose like clockwork for me (1mg weekly). I had to stop after week 2.
In context ↗ - SS-31 · Helped
I’ve noticed significant improvements in my shortness of breath and tachycardia over the last few days with SS-31. I also did bed exercises yesterday for the first time in months and had no PEM today
In context ↗
Approaches: Peptides
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. 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 | After |
|---|---|---|---|
| onset | long COVID followed by ME/CFS and POTSI have long covid induced ME, which is severe and POTSIn context ↗ | Not stated | |
| — | 95% bed bound, refractory to many medications and supplementsI have been 95% bed bound for 1.5 years, refractory to a laundry list of medications and supplementsIn context ↗ | Very severe | |
| before October 2026 | PEM crash 36 hours after each weekly rapamycin dose; stopped after week 2it actually induced PEM crashes 36 hours post dose like clockwork for me (1mg weekly)In context ↗ | Severe | |
| 2026-10-07 | started SS-31; less breathlessness and tachycardia, bed exercises without PEMI’ve noticed significant improvements in my shortness of breath and tachycardia over the last few days with SS-31 ... had no PEM today, which is huge for meIn context ↗ | Severe | SS-31 (elamipretide) |
| 2026-10-21 | back at typical severe baselineAfter that, I was back to my typical baseline.In context ↗ | Severe |
Adverse events
- Rapamycin / sirolimus“it actually induced PEM crashes 36 hours post dose like clockwork for me (1mg weekly). I had to stop after week 2.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
it actually induced PEM crashes 36 hours post dose like clockwork for me
In context ↗ - Brain fog
cognitive fatigue seems a bit better but it’s difficult to judge this early on
In context ↗ - POTS & dysautonomia
I have long covid induced ME, which is severe and POTS
In context ↗ - Breathlessness
significant improvements in my shortness of breath
In context ↗ - Heart symptoms & palpitations
significant improvements in my shortness of breath and tachycardia
In context ↗
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