How it went
Did it last?
- 2 of 8 said the benefit wore off (including the 1 who relapsed).
- 2 of 8 needed to keep doing it to stay well.
Read from what people wrote. A story that ends without a follow-up counts as lasting, so treat these as minimums.
| Outcome described | Accounts | Share |
|---|---|---|
| Full recovery | 0 | 0% |
| Near-full | 0 | 0% |
| Substantial | 2 | 25% |
| Partial | 4 | 50% |
| Relapsed | 1 | 12% |
| No benefit | 1 | 12% |
Only 8 accounts. Treat these percentages as anecdotes, not rates.
By how ill people were
| Severity at worst | How it went | n | Recovered |
|---|---|---|---|
| Severe | 2 | 0% | |
| Very severe | 3 | 0% |
3 accounts don’t say how ill the person was.
Who published these accounts
Right-hand number: share describing a full or near-full recovery. Pages that sell something, and advocacy sites, tend to publish only the successes.
How often it comes up
Posts that mention Rapamycin / sirolimus, per 1,000 posts each year. Hover a point for the count.
Show as a table
| Year | Posts mentioning it | All posts | Per 1,000 |
|---|---|---|---|
| 2009 | 0 | 184 | 0.0 |
| 2010 | 0 | 682 | 0.0 |
| 2011 | 0 | 704 | 0.0 |
| 2012 | 0 | 1,491 | 0.0 |
| 2013 | 1 | 1,708 | 0.6 |
| 2014 | 0 | 2,352 | 0.0 |
| 2015 | 0 | 2,158 | 0.0 |
| 2016 | 0 | 1,431 | 0.0 |
| 2017 | 119 | 3,110 | 38.3 |
| 2018 | 11 | 2,201 | 5.0 |
| 2019 | 4 | 1,075 | 3.7 |
| 2020 | 3 | 2,581 | 1.2 |
| 2021 | 1 | 1,867 | 0.5 |
| 2022 | 5 | 1,166 | 4.3 |
| 2023 | 11 | 1,000 | 11.0 |
| 2024 | 6 | 1,237 | 4.9 |
| 2025 | 3 | 1,019 | 2.9 |
| 2026 (so far) | 4 | 840 | 4.8 |
Posts in the forum threads we archived, 26,806 in all, counted per year. A mention means the post names the treatment, not that the writer took it. These threads all contain a recovery story, so they show what those communities discussed, not everyone with ME/CFS or long COVID. All trends
All 8 accounts
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Clinical trials are testing rapamycin for Long COVID and ME (Kelly)
Kelly, a 40-year-old in New York City who was sometimes bed-bound with Long COVID and ME, took rapamycin obtained through AgelessRx starting in November 2024. Within about a week she reported some improvement in her symptoms, though she described the overall…
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Clinical trials are testing rapamycin for Long COVID and ME (Wade)
Wade, a 32-year-old in Nashville who was nearly bedbound with Long COVID, took rapamycin obtained through Healthspan, starting his first dose in March 2025. After an initial negative reaction he reported feeling great in a way he had not for months, able to…
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Treatments. Yes, they do exist.
In this follow-up post, Encephalogirl (Michelle) lists an expanded regimen: low-dose naltrexone, low-dose Abilify, guanfacine, about nine months of tenofovir as part of a planned minimum one-year antiviral course, six weeks of low-dose rapamycin at 1mg once…
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Martin's Paradoxical Temporary ME/CFS Remission Story
Martin became ill after EBV reactivation, Lyme disease and food poisoning, and was bedbound for the last three of his ten years of illness with severe post-exertional malaise. Lyrica, benzodiazepines, tianeptine, quetiapine, rapamycin and methylprednisolone…
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Rapamycin / Sirolimus for ME / CFS and Central Sensitization
Alivenotkicking, on sirolimus since November 2023 at 1mg building to 3mg weekly, says he does feel more active and less easily fatigable. He immediately qualifies it: he is also on low-dose naltrexone which has definitely helped a lot, so it is hard to say,…
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A Rapamycin Resurgence: An MD Moves the Needle on his ME/CFS
Liver derivative complex (Nexavir) was one of more than a dozen treatments he listed trying, alongside antidepressants, antivirals, erythromycin, doxycycline, NAC and others, with no dose or duration specified for it individually. He had been very severely…
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mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas
Two days into taking Rapamune, wrote "feel much much much better. Finally spent most of the day out of bed," and on day two, "it still seems to be working." Explicitly cautious about reading too much into so little time, noting prior false hope with Famvir…
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mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas
Started Rapamune (rapamycin) roughly a month before the quoted comment, changing nothing else in her regimen, and reports "SIGNIFICANT improvement in both physical and cognitive functionality." Says her oncologist has four other ME/CFS patients on Rapamune…