How it went
Did it last?
- 2 of 8 said the benefit wore off (including the 1 who relapsed).
- 1 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 | 1 | 12% |
| Substantial | 3 | 38% |
| Partial | 2 | 25% |
| 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 |
|---|---|---|---|
| Moderate | 2 | 50% | |
| Severe | 2 | 0% | |
| Very severe | 1 | 0% |
3 accounts don’t say how ill the person was.
How often it comes up
Posts that mention Ketotifen / cromolyn, 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 | 1 | 704 | 1.4 |
| 2012 | 4 | 1,491 | 2.7 |
| 2013 | 1 | 1,995 | 0.5 |
| 2014 | 3 | 2,707 | 1.1 |
| 2015 | 3 | 2,566 | 1.2 |
| 2016 | 18 | 2,023 | 8.9 |
| 2017 | 3 | 3,381 | 0.9 |
| 2018 | 2 | 2,523 | 0.8 |
| 2019 | 2 | 1,637 | 1.2 |
| 2020 | 3 | 3,318 | 0.9 |
| 2021 | 4 | 2,469 | 1.6 |
| 2022 | 2 | 1,871 | 1.1 |
| 2023 | 4 | 2,362 | 1.7 |
| 2024 | 4 | 2,176 | 1.8 |
| 2025 | 0 | 1,349 | 0.0 |
| 2026 (so far) | 0 | 899 | 0.0 |
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 8 accounts
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Pepcid and 1 month without an 'episode'
After 36 years with ME/CFS and a period of mold exposure and concussions, began a low-oxalate diet on top of an existing low-histamine diet, plus doctor-prescribed Pepcid and ketotifen fumarate. Describes feeling, before this, like dropping through layers of…
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Cromolyn side effects
Cromolyn sodium capsules, 4 x 200mg (800mg/day total) mixed into water; duration of illness and severity are not stated. She reported food passing through her digestion largely unprocessed, worse digestion generally, disrupted sleep, reduced capacity, and…
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Amber's Long MCAS, POTS, MCS, ME/CFS Recovery Story
Amber had digestive and allergy problems since childhood that became severe MCAS, POTS, MCS and ME/CFS after a marathon at thirty and a bad flu-shot reaction at thirty-one, leaving her homebound and fainting daily despite seeing more than a hundred doctors.…
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An ME/CFS Expert Helps a Long-COVID Patient Recover
A nineteen-year-old developed POTS and mast cell symptoms after a mild PCR-confirmed COVID infection, leaving him with a wellness score of 45 out of 100 and out of in-person classes for about fifteen months. Under Dr Peter Rowe at Johns Hopkins he was…
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My recovery after my one and only crash.
Combined a strict elimination diet (no gluten, dairy, processed food or fructose) with Lyrica at 225mg per day, low-dose naltrexone, ketotifen, antihistamines, B12 with methylfolate, rifaximin plus neomycin for SIBO, hyperbaric oxygen, and later tDCS.…
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I'm in love with Ketotifen!
Ketotifen, starting with over-the-counter Zaditor eye drops before moving to the oral tablet form, exact dose and duration not stated; how long ill is not given, though she describes moderate chemical sensitivity and anaphylaxis-like reactions. She reported…
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Cromolyn Sodium Powder to make my own Gastrocrom
Cromolyn sodium (GastroCrom), taken at 200-400mg per dose multiple times daily on an ongoing long-term basis; duration of illness and severity are not stated. She called it one of her best medications, saying she has had only a good response and nothing bad…
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What Is MCAS Like?
Ketotifen, dose and duration not stated; how long ill and severity are not given. He described it as being like a miracle drug when he first started taking it. He then crashed very badly. The account frames this as an example of medication sensitivity, with…