How it went
Did it last?
- 1 of 9 said the benefit wore off: the one who relapsed.
- 1 of 9 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 | 1 | 11% |
| Substantial | 5 | 56% |
| Partial | 2 | 22% |
| Relapsed | 1 | 11% |
| No benefit | 0 | 0% |
Only 9 accounts. Treat these percentages as anecdotes, not rates.
By how ill people were
| Severity at worst | How it went | n | Recovered |
|---|---|---|---|
| Severe | 5 | 20% | |
| Very severe | 3 | 0% |
1 accounts don’t say how ill the person was.
How often it comes up
Posts that mention Mestinon / pyridostigmine, 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 | 0 | 1,995 | 0.0 |
| 2014 | 0 | 2,707 | 0.0 |
| 2015 | 2 | 2,566 | 0.8 |
| 2016 | 32 | 2,023 | 15.8 |
| 2017 | 4 | 3,381 | 1.2 |
| 2018 | 4 | 2,523 | 1.6 |
| 2019 | 26 | 1,637 | 15.9 |
| 2020 | 18 | 3,318 | 5.4 |
| 2021 | 6 | 2,469 | 2.4 |
| 2022 | 15 | 1,871 | 8.0 |
| 2023 | 14 | 2,362 | 5.9 |
| 2024 | 11 | 2,176 | 5.1 |
| 2025 | 11 | 1,349 | 8.2 |
| 2026 (so far) | 2 | 899 | 2.2 |
Posts in the forum threads and blog comments we archived, 34,337 in all, counted per year. A mention means the post names the treatment, not that the writer took it. These pages all contain a recovery story, so they show what those communities discussed, not everyone with ME/CFS or long COVID. All trends
All 9 accounts
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Case Report: mitochondrial insufficiency and cholinergic failure in post-vaccination LC
This 80-year-old professor was given Mestinon (pyridostigmine bromide) 90 mg daily for balance problems, which brought minimal benefit over two months, and then a mitochondrial support protocol targeting NAD+ repletion, electron transport chain function and…
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Mestinon + Famvir - whoa!
On Famvir 1500mg/day plus Celebrex 200mg twice daily, had "nearly 2 years" of improvement after an initially rough adjustment period, then suffered a "major EBV relapse" in February/March. Offers a longer-horizon counterpoint to BadBadBear's account in the…
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My 4th Year; EBV, ME/CFS, Long Covid; Pacing, HBOT, Vedicinals
Vedicinals-9, taken short-term as a nutraceutical supplement alongside an organic diet. She had been ill for four years at the time of writing, with EBV-triggered ME/CFS overlapping long COVID, managing dysautonomia with pyridostigmine and midodrine plus…
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Health Update #4: Recovery is a %*#*&$@!
Jennifer Brea had been managing severe ME for about 8 years with Valcyte, Valtrex, Mestinon, and fludrocortisone plus mold avoidance, which had only brought her from severe to moderate; in November 2018 she underwent three surgeries over six weeks — a…
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Jennifer Brea's Chronic Fatigue (ME/CFS) Recovering Story
Underwent spinal surgeries over several weeks to correct craniocervical instability (CCI) and tethered cord syndrome, wore a neck collar (Philadelphia or Aspen Vista) during recovery, and found the drug Mestinon (pyridostigmine) helpful for symptoms. She had…
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More Fatigue with Famciclovir, I Must Continue
Mel9, mostly bedbound with heavy legs and a POTS-type heart-rate response to standing, took 30mg (half a tablet) of Mestinon every four hours and became able to manage a 4km walk plus a further short activity after resting, with reduced POTS symptoms and…
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Mestinon + Famvir - whoa!
After a severe EBV flare in February 2017 that made cardiac symptoms - low blood pressure, low heart rate, shortness of breath, "heart palpitations like mad" - much worse on top of 5 years of CFS, started Famvir (titrated up to 500mg twice daily), added…
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Mestinon, Chronic Fatigue, Vagus Nerve Stimulation and Exercise
After 28 years of never being able to exercise despite seeing top ME/CFS specialists worldwide, and a recent low point involving surgeries, ER visits and a drug reaction, this patient started 180mg/day Mestinon and within weeks felt an urge to run for the…
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List of ME/CFS Recovery and Improvement Stories (thread, page 10)
batty_ash03 went from housebound and mostly bedbound to mild, with PEM only from cardio exercise, within two months of starting Mestinon 45mg three times a day. By 4-5 months the gains were sustained, and she had added strength training and part-time work…