Positives

• One trial participant reported that after a few months “I was able to whisper briefly but reliably to my caregiver, which was extraordinary after years of silence” The Sick Times.
  
  

Negatives

• A patient on Phoenix Rising titrated weekly rapamycin from 2 mg up to 4 mg and reported their ME/CFS symptoms steadily got worse over the month before they stopped, while a patient said it either did nothing or made them worse Phoenix Rising.
• A patient profiled by The Sick Times described rapamycin as “nothing short of a miracle” for six months, then began crashing after exercise and discontinued, while another patient stopped during week three after developing allergies and mouth sores The Sick Times.

Hurdles & Side Effects

• Sirolimus is FDA-approved for organ transplant rejection, so off-label prescribing for ME/CFS or Long COVID typically requires a longevity-medicine clinician and out-of-pocket payment of roughly $200-400/month at compounded doses ME Association.