Thiamine, vitamin B1, is it a cure?

Messages
4
Likes
17
Hi All,

Has anyone gone into long-term complete remission through high-dose Thiamine supplementation? were/are you a heavy drinker?

Due to the positive outcomes in clinical studies (https://www.healthrising.org/blog/2021/04/15/thiamine-b-1-chronic-fatigue-syndrome-fibromyalgia/) and the poll results on this board (https://www.healthrising.org/blog/2...-fatigue-syndrome-benefit-high-dose-thiamine/) where 2/3 of voters experienced large benefits, I started taking Thiamine mid-way through last year and have not had PEM since.

2nd question- Why do people on this board talk constantly about essentially all these other vitamins/potions/trinkets/nutrition but never really about Thiamine? I am wondering if those who successfully take Thiamine go into remission and then stop posting?
 

JES

Senior Member
Messages
1,187
Likes
2,805
If you use the search function, you'll find 30+ threads here on PR with "thiamine" in threat title. Here is one discussing the specific survey and here is a long one discussing mechanisms.

Thiamine is incredibly easy to get hold of, so I would expect if it worked as well as claimed for us, there would be more cure stories. The Health Rising survey had a low participant count of 55 and with such a small number of answers I suspect many people whom it didn't help didn't bother answering it.

I have read some success stories particularly with more absorbable forms of thiamine like allithiamine, benfotiamine and sulbutiamine, which I would be interested in trying at some point. It seems some of the survey participants used those forms as well, which are harder to find available. The last time I tried regular thiamine it produced a "wired but not tired" effect, which is a sign it isn't working for me.
 

Wishful

Senior Member
Messages
4,377
Likes
7,986
Location
Alberta
B1 gave me a slight benefit the first couple of doses, then stopped having any noticeable benefit. Responses to ME treatments is very individualistic. B1 is definitely not a treatment that works for everyone with ME. BTW, that survey showed people taking it long-term, which makes it a treatment (for them), but definitely not a cure. A cure means that you no longer have to take the treatment.

I wish B1--or any other treatment-- would work reliably for a lot more people. Instead, we have treatments that work well for a few people, do nothing for others, and make others worse.

My guess is that for those that it does help, B1 is correcting an upstream comorbid disorder that worsens ME, or treats a downstream symptom. It's probably not affecting the core dysfunction of ME, or else it would work for more people.
 
Messages
4
Likes
17
Thanks for the replies. I understand who to use a search function, I am just surprised given the positive results in clinical studies and recent anecdotal evidence, the vast majority of discussions on thiamine were before the positive news came out. Yet positive news has come out and yet is completely dismissed with comments like JES above that only people with positive experience would submit a response to a poll (I guess the site should ban polls). Anyway, looking forward to some answers to the first question. And wishful, your positive response to cumin could be due to its high thiamine content, maybe something to consider? As it Cumin has more thiamine in it compared to almost any other herb or spice. And wishful good point about the treatment rather than cure.
 

Wishful

Senior Member
Messages
4,377
Likes
7,986
Location
Alberta
And wishful, your positive response to cumin could be due to its high thiamine content, maybe something to consider?
No, that's fairly unlikely, since I had been consuming other foods rich in thiamin (probably more than contained in a tsp of cumin), and didn't notice a similar benefit. I tried other herbs&spices that contained some of the other components of cumin, with no effect, so I'm convinced that it was the cuminaldehyde.
 

Carl

Senior Member
Messages
346
Likes
428
Location
United Kingdom
I have been taking Benfotiamine for a very long time, many years, probably over 10 at doses of 600mg and now 500mg/day. I take it for it's benefit to AGE (Advanced Glycation End products). It is difficult to say if there is any help to my ME seeing as another treatment virtually eliminates most of the adverse effects of ME.

B1 is not a cure and it does not address the cause which lies in the digestive system.
 
Messages
64
Likes
125
I took 100 mg of thiamine hcl for 1 week, no benefits unfortunately. I will try to up the dose and see what happens!
I saw some posts on reddit that even moderate doses of thiamine hcl (30-50mg) helped someone significantly with dysautonomic symptoms (of course not curative, but improvement remained after stopping thiamine)