Miruvor

Thiamine / benfotiamine

9 people describe trying Thiamine / benfotiamine, all with ME/CFS.

11%
recovered fully or nearly
1 of 9
78%
improved (substantial or partial)
7 of 9
11%
relapsed
1 of 9
0%
no benefit
0 of 9

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 describedAccountsShare
Full recovery111%
Near-full00%
Substantial111%
Partial667%
Relapsed111%
No benefit00%

Only 9 accounts. Treat these percentages as anecdotes, not rates.

By how ill people were

Severity at worstHow it wentnRecovered
Very severe20%

7 accounts don’t say how ill the person was.

Who published these accounts

Sells a treatment or program1 accounts
0%
Independent (blog, forum, news)8 accounts
12%

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 Thiamine / benfotiamine, per 1,000 posts each year. Hover a point for the count.

010202009201220152018202120242026
Show as a table
YearPosts mentioning itAll postsPer 1,000
200901840.0
201016821.5
201107040.0
201251,4913.4
2013481,70828.1
201482,3523.4
201592,1584.2
2016111,4317.7
2017433,11013.8
2018182,2018.2
201941,0753.7
202022,5810.8
2021121,8676.4
202281,1666.9
2023191,00019.0
202481,2376.5
202531,0192.9
2026 (so far)18401.2

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 9 accounts

  • Candida disappearing with Calcium

    Relapsed ME/CFS Effect faded forums.phoenixrising.me Jan 2024

    Calcium citrate initially replicated Hoosierfans' success, stopping his routine sore throat and improving sleep and gut motility. After adding NAC for three months he developed foot pain and agitation, then histamine-type reactions to the calcium itself…

  • My gigantic story going back to 1996, treatment plan included

    Partial ME/CFS Very severeIll 27 years forums.phoenixrising.me Apr 2023

    Five days into a thiamine/magnesium/potassium-focused protocol after nearly three decades of worsening illness, TexRob reports restored temperature regulation, normalized sweating, resumed GI and urinary function, and reduced brain fog/neuropathic pain,…

  • My gigantic story going back to 1996 (Mary)

    Partial ME/CFS forums.phoenixrising.me Apr 2023

    Mary, a forum moderator, said thiamine gave her an amazing boost in energy at first, then caused severe fatigue until she realised it was depleting phosphorus and added that back. She is a big fan of thiamine but explicit that it has not solved her illness,…

  • List of ME/CFS recovery and improvement stories

    Partial ME/CFS forums.phoenixrising.me May 2021

    Benfotiamine at 150-300mg daily, taken for about two or three months in 2018, produced cognitive improvement. The benefit then ended abruptly: intolerance set in and not even the tiniest dose could be taken afterwards, a state still holding three years…

  • How I Found My Long Lost Energy

    Substantial ME/CFS prohealth.com · sells Mar 2021

    Relayed by forum member godlovesatrier, this ProHealth-published patient credited 1200mg high-dose thiamine with major energy improvements, reduced PEM, better mental clarity and reduced inflammation. The original article could not be fetched directly (it…

  • List of ME/CFS Recovery and Improvement Stories (page 7 discussion)

    Partial ME/CFS Very severe forums.phoenixrising.me 2021

    splusholia reported that 750mg of benfotiamine daily helped even when very severely ill (unable to speak and needing full-time care). No further detail on duration of illness, exact timeline of benefit, or long-term durability was captured beyond this…

  • Successful Pilot Study Treating PDH Deficiency in ME/CFS (B1 / CoQ10 / ALA / Algae + HOA)

    Partial ME/CFS forums.phoenixrising.me Nov 2017

    Thiamine injections (with oral benfotiamine also tried), as part of a broader personal supplement stack, improved heavy limbs, muscle twitching, energy, post-meal exhaustion and brain fog. By her own account, "I'm not cured, I just can function better" -- a…

  • Significant Improvement Story -- Focus on Thiamine Deficiency

    Full recovery ME/CFS Ill 9 years forums.phoenixrising.me Jul 2013

    Daily thiamine injections reportedly resolved nine years of ME/CFS that the patient attributed to "a vitamin deficiency caused by a metabolic error," leaving them "leading a normal life today." This account was reposted secondhand by another member quoting…

  • anyone find something that significantly improves cognition/memory?

    Partial ME/CFS forums.phoenixrising.me Jun 2012

    Takes benfotiamine and Carniclear (L-carnitine) along with coconut oil every couple of days, saying they "work great for me" with an energy boost from the coconut oil in particular. The claim is stated positively but without much specific detail on…