ME/CFS
Moderate → no benefitIll for 8 years
Moderate ME/CFS for eight years, no benefit from a stopped rapamycin trial
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 8 years
- Last post
- Sep 2025
In their words
- Condition: ME/CFS
As an ME patient that unequivocally has been long-termed setback from the vaccine
In context ↗ - At worst: Moderate
COVID vaccine (2nd Pfizer) destroyed my moderate ME baseline
In context ↗ - Now: No benefit
COVID vaccine (2nd Pfizer) destroyed my moderate ME baseline. Never touching another one
In context ↗
Read from 8 of their posts and comments; links to the 6 this page draws on
Summary
A Reddit user ill with ME/CFS for about eight years described a moderate baseline that a second Pfizer COVID vaccine in 2021 destroyed. In 2025 they stopped a one-dose rapamycin trial at Mayo/Simmaron after significant upper-abdomen pain and a raised calprotectin. Later that year they had a PEM crash with persistent heaviness/fullness in the legs.
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What they tried
Also tried
Their words about each treatment
- COVID vaccine (2nd Pfizer) · Much worse
As an ME patient that unequivocally has been long-termed setback from the vaccine ... COVID vaccine (2nd Pfizer) destroyed my moderate ME baseline.
- Rest and time · Helped
Rest and time has been my remedy previously with this symptom ... only about 4 times in 8 years with this illness
In context ↗ - Rapamycin · Worse
Unfortunately after one dose, I experienced significant GI pain (burning feeling in upper abdomen). I had to make the decision to stop the trial at that time.
In context ↗ - rest + hydration + pacing · No change
I thought with rest + hydration + pacing it would dissipate. Unfortunately it hasn't yet
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| onset | ME/CFS onset; moderate baseline for yearsmy moderate ME baselineIn context ↗ | Moderate |
| 2021 | second Pfizer COVID vaccine destroyed their baselineCOVID vaccine (2nd Pfizer) destroyed my moderate ME baseline. Never touching another oneIn context ↗ | Severe |
| 2025-09 | heaviness and fullness in the legs after a PEM crash, not settlingIt recently developed for me in a PEM crash, and I thought with rest + hydration + pacing it would dissipate. Unfortunately it hasn't yetIn context ↗ | Moderate |
Adverse events
- COVID vaccination as treatment“As an ME patient that unequivocally has been long-termed setback from the vaccine ... COVID vaccine (2nd Pfizer) destroyed my moderate ME baseline.” Made symptoms worse
- COVID vaccination as treatment“My side effects started around Day 21 post 2nd-V.” In context ↗ Side effects
- Rapamycin / sirolimus“after one dose, I experienced significant GI pain (burning feeling in upper abdomen). I had to make the decision to stop the trial at that time.” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Muscle weakness
this heaviness or fullness feeling in their legs, that feels like a pulsating-like feeling
In context ↗