How it went
Did it last?
- 3 of 23 said the benefit wore off (including the 2 who relapsed).
- 6 of 23 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 | 1 | 4% |
| Near-full | 1 | 4% |
| Substantial | 10 | 43% |
| Partial | 9 | 39% |
| Relapsed | 2 | 9% |
| No benefit | 0 | 0% |
By how ill people were
| Severity at worst | How it went | n | Recovered |
|---|---|---|---|
| Moderate | 3 | 0% | |
| Severe | 6 | 0% | |
| Very severe | 4 | 25% |
10 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 Tenofovir / antiretrovirals, 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 | 5 | 682 | 7.3 |
| 2011 | 1 | 704 | 1.4 |
| 2012 | 1 | 1,491 | 0.7 |
| 2013 | 0 | 1,708 | 0.0 |
| 2014 | 5 | 2,352 | 2.1 |
| 2015 | 0 | 2,158 | 0.0 |
| 2016 | 2 | 1,431 | 1.4 |
| 2017 | 84 | 3,110 | 27.0 |
| 2018 | 11 | 2,201 | 5.0 |
| 2019 | 3 | 1,075 | 2.8 |
| 2020 | 10 | 2,581 | 3.9 |
| 2021 | 1 | 1,867 | 0.5 |
| 2022 | 3 | 1,166 | 2.6 |
| 2023 | 2 | 1,000 | 2.0 |
| 2024 | 6 | 1,237 | 4.9 |
| 2025 | 1 | 1,019 | 1.0 |
| 2026 (so far) | 5 | 840 | 6.0 |
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 23 accounts
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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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Improved on triple anticoagulant therapy, considering adding tenofovir
Five months into apixaban, clopidogrel and aspirin (aspirin eventually raised to 100mg/day) for Long Covid presenting as moderate ME/CFS of over two years' standing, improvements appeared around day 40: ability to tolerate screens "increased manyfold," eye…
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List of ME/CFS Recovery and Improvement Stories (page 10 discussion)
fingers2022 has been on PrEP (tenofovir/emtricitabine, an antiretroviral combination) for 5 years and roughly doubled his weekly training energy expenditure (1,500 to 3,000 kcal), tracked objectively via parkrun and Strava data, with better physical capacity…
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Björn recovered from severe ME with antivirals (valganciclovir, ritonavir and isentress)
Started Otezla in autumn 2018, which "made a big difference" within a month, then added valganciclovir, ritonavir and Isentress from January 2019. Had been confined to a dark room, wheelchair-bound and unable to tolerate sound or light after a 2016 crash;…
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Antiretrovirals to treat MECFS
Truvada (tenofovir disoproxil fumarate plus emtricitabine), alternating some months with tenofovir alone, with raltegravir planned as an addition. Illness duration and severity are not stated in the post. Her husband reports she is slowly recovering on the…
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My antiretroviral Regime for Antiretroviral Treatment of Myalgic Encephalomyelitis
Reishi mushroom (Ganoderma lucidum) 500mg daily was used as a protease-inhibitor substitute within a broader antiretroviral regimen that also included tenofovir, started at a fraction of a tablet and raised over seven months to full dose, plus cistus incanus…
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#Arztanfragen - Mein Therapieregime für die antiretrovirale Behandlung bei Myalgischer Enzephalomyelitis
Reishi mushroom (Ganoderma lucidum), one 500mg capsule daily as a protease inhibitor, was taken as part of a combination antiviral protocol that also included low-dose tenofovir, Cistus incanus, and green tea extract, recommended by Dr. Judy Mikovits. The…
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ME versus CFS: #Arztanfragen - Mein Therapieregime für die antiretrovirale Behandlung bei Myalgischer Enzephalomyelitis
Cistus incanus, 2100mg daily, taken as one part of a broader antiretroviral regimen, including tenofovir titrated up over seven months plus N-acetylcysteine, glutathione, niacinamide, reishi mushroom and green tea extract, that a mother, Katharina Voss,…
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Tenofovir (Viread), Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs? Tenofovir Poll
Keela Too, housebound/using a wheelchair or mobility scooter for three years, took tenofovir for a year with regular kidney monitoring, adding sodium bicarbonate from the six-month mark. Gains built slowly from about month 4 to a peak at month 10, greatly…
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Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll
Took tenofovir and raltegravir continuously for four years for ME/CFS that began after a measles/rubella/polio booster as a teenager, with extensive testing having ruled out Lyme disease. Quoted directly as saying "After 20 years of ME I am now cured. My 4th…
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Full Remission Claimed (fingers2022)
A former elite triathlete, fingers2022 reports his resting heart rate moving back toward pre-illness levels and activity volume up about 15% and intensity up about 10% after two months of an unprescribed antiretroviral combination. He is explicit that he…
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Full Remission Claimed (ScottTriGuy)
ScottTriGuy, who also has HIV and has taken antiretrovirals since 2002, says he sometimes wonders if he would be a lot sicker from his ME/CFS without them and describes better quality of life, without calling himself cured. He separately notes that being…
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Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll
States only "Tenofovir helped me," adding that she had deleted most of her original, more detailed post "with ongoing forum upheaval" and pointing to an outside blog post instead. No dose, illness-duration, severity, or durability information remains in the…
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Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll
Reported in the same thread that "Tenofovir is helping me a lot," with "no side effects at all or die off type stuff," and liver and kidney function tests staying normal. Gives no detail on illness duration, severity, dose, or how long he had been taking it,…
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Antiretrovirals to treat MECFS
Truvada (emtricitabine/tenofovir), taken for about three months before adding Valtrex and Valcyte on an ongoing basis. Illness duration and severity beforehand are not stated, though functioning was self-rated at 5 out of 10. Improved to 7 out of 10 on…
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Good results from valtrex and valcyte combo
Added Valtrex 1g/day, then Valcyte 450mg twice daily a month later, on top of about a year already on Truvada, for CFS present "5 to 6 years" but only diagnosed 3-4 months earlier; self-rated baseline severity "5 or 6 out of 10," never bedridden but with…
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Seeing some immediate improvement with ARVs
Started Isentress and Truvada after years of antibiotics for comorbid Lyme disease and ME/CFS (also XMRV-positive) had only kept him from "disability." Reports "immediate improvement" and, hedging with "if I had to guess," attributes "85% of my improvement"…
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Our Experience with Antiretrovirals
Ali took the same initial antiretroviral regimen as her mother (AZT/raltegravir, then tenofovir) but, unlike her mother, kept improving and remained on raltegravir plus tenofovir rather than stopping. The source (her mother's blog) reports her gains as…
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Our Experience with Antiretrovirals
Dr. Deckoff-Jones, suspecting XMRV involvement, started AZT plus raltegravir in March 2010, added tenofovir two months later, then dropped AZT (2011) and raltegravir (2011) to end on tenofovir alone before stopping all antiretrovirals by late 2012. She…
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Update from Michael Snyderman, MD
Dr. Snyderman, who developed CFS about a decade after an oral polio vaccine and later CLL, started AZT plus raltegravir 571 days after his CLL diagnosis and improved for about 9.4 months, with falling cytokine markers and better fatigue, concentration and…
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List of ME/CFS Recovery and Improvement Stories
Sandman00747 is listed reporting substantial improvement on a 150mg/day tenofovir combination pill, describing PEM as resolved and saying he "almost" has his life back, with an incidental note of nail psoriasis clearing.
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List of ME/CFS Recovery and Improvement Stories
Keela Too is listed as moving from severe to moderate on tenofovir over 12 months, with the gains described as permanent.
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Tenofovir (Viread), Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs? Tenofovir Poll
Index entry credits Diwi9 with oxymatrine (Equilibrant) for ME/CFS improvement; attempting to verify the linked post did not locate it, so no further detail on duration of illness, severity or durability beyond the bare index claim is available.