How it went
Did it last?
- No one said the benefit wore off.
- 1 of 4 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 | 50% |
| Partial | 1 | 25% |
| Relapsed | 0 | 0% |
| No benefit | 1 | 25% |
Only 4 accounts. Treat these percentages as anecdotes, not rates.
By how ill people were
| Severity at worst | How it went | n | Recovered |
|---|---|---|---|
| Very severe | 4 | 0% |
0 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 Tube feeding (NG, NJ, PEG, TPN), 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 | 3 | 682 | 4.4 |
| 2011 | 1 | 704 | 1.4 |
| 2012 | 0 | 1,491 | 0.0 |
| 2013 | 3 | 1,708 | 1.8 |
| 2014 | 0 | 2,352 | 0.0 |
| 2015 | 4 | 2,158 | 1.9 |
| 2016 | 2 | 1,431 | 1.4 |
| 2017 | 3 | 3,110 | 1.0 |
| 2018 | 2 | 2,201 | 0.9 |
| 2019 | 0 | 1,075 | 0.0 |
| 2020 | 1 | 2,581 | 0.4 |
| 2021 | 0 | 1,867 | 0.0 |
| 2022 | 1 | 1,166 | 0.9 |
| 2023 | 0 | 1,000 | 0.0 |
| 2024 | 1 | 1,237 | 0.8 |
| 2025 | 0 | 1,019 | 0.0 |
| 2026 (so far) | 0 | 840 | 0.0 |
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 4 accounts
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The Strange Syndrome: MCAS, ME/CFS, Fibromyalgia and Long COVID (comment)
Xolair (omalizumab), given as a bi-weekly injection by her GI doctor for mast cell activation syndrome. The patient, described by her father in a comment, had intense MCAS for five years alongside ME/CFS, POTS and gastroparesis, and was very severely ill:…
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Extremely Severe ME/CFS - A Personal Account
Tube feeding: after roughly a decade of ME/CFS progressing from mild to extremely severe, Whitney Dafoe developed severe gastroparesis and was fed first via a PICC line with IV nutrition, then via a jejunostomy (J-tube) for total enteral nutrition, going six…
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From very severe to moderate in two months
Combined low-dose Abilify (titrated up to 4mg), LDN 4.5mg and Celebrex 100mg under a GP's supervision. Went from very severe -- fed via a PEG tube -- to moderate within two months, stating "I don't need my PEG anymore" and managing about four hours out in a…
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ME/CFS - Whitney Dafoe
Percutaneous jejunostomy (J-)tube feeding, inserted in 2013 after his stomach became completely paralyzed, used daily since alongside a separate PICC line for saline hydration. Whitney Dafoe had been severely ill with ME/CFS since 2004, and by 2013 was…