High-dose Oral Thiamine Vs Placebo for Chronic Fatigue in Patients With Quiescent Inflammatory Bowel Disease, 2021, Bager et al

Randomised clinical trial: high-dose oral thiamine versus placebo for chronic fatigue in patients with quiescent inflammatory bowel diseas, Bager et al

https://pubmed.ncbi.nlm.nih.gov/33210299/

Health Rising had a guest blog feauturing this study, https://www.healthrising.org/blog/2021/04/15/thiamine-b-1-chronic-fatigue-syndrome-fibromyalgia/, which supposes a hypothetical link to treating me/cfs.

 

Hasn't virtually everyone (pwME), who's been around a 'while', already tied high dose thiamine , with null or very limited results?

Doesn't an increase in fatigue from doing 'nothing' (other than presumably answering a questionnaire), suggest an 'issue' with their questionnaire?

 

One or two individuals have been aggressively pushing this high dose thiamine treatment hypothesis on twitter and reddit lately as a cure for ME/CFS. As far as I can tell, they don't even have ME/CFS. It's odd.

 

I've taken Thiamine/B1 before, as it is commonly recommended while taking Disulfiram for Lyme Disease.

I didn't realize at the time that it was technically a "high dose".

I guess it's like Vitamin C, where the common supplement dose is an order of magnitude (or more) above the recommended daily intake?

The study design looks pretty good, I'm just not sure if it is indeed relevant to ME/CFS.

 

I wondered what high dose actually meant. Turns out it is between 600mg and 1800mg per day. I've come across the lower of those two doses before in other contexts, but never anything higher.

I've come across thiamine being suggested as a treatment for low energy in people with hypothyroidism several times.

In that context it gets mentioned quite often on Izabella Wentz's website : https://thyroidpharmacist.com/?s=thiamine

I've also read that it helps girls who react badly to getting the Gardasil vaccine /HPV vaccine.

https://www.hormonesmatter.com/post-gardasil-pots-thiamine-deficiency/
https://www.hormonesmatter.com/ideas-gardasil-toxicity-thiamine-connection/

The above two links are both by the same man, and I have no idea if he is well thought of or not.

 

I've had another look and one of these individuals is pushing it because he believes that Beri Beri and ME/CFS have similar symptoms. As far as I can see, there's very few similarities.

It was also being peddled by the group of doctors who claimed to have found the cause and cure for LongCovid only a few weeks after the LongCovid phenomenon was first publicised. Even LongCovid patients appear to be completely unimpressed with the overblown hype from this group these days.

 

Sorry if this has already been posted, it was some tiny N=3) studies from Italy:

https://pubmed.ncbi.nlm.nih.gov/23696141/

I tried Thiamine (maybe 2014) and gradually worked up to 1800. I had much more energy and was able to walk about a quarter of a mile. I lost my nerve and stopped as I had no idea what I was doing.

 

On the me/cfs subreddit for the past month or so there have been a number of reports of moderate improvements from high dose thiamine.

Normally I would ignore this, but the number did intrigue me. Not a rec just an observation.

 

I am starting to take high B1 (Thiamine) today to see if it will help with the adverse reactions from the covid vaccines. Some people have found that the B1 has helped with the burning pain from vaccine induced neuropathy. I read yesterday that some people with MS have found that B1 helped with their MS fatigue. I also read about Karen Lee Richards (use to moderate the about.com ME/CFS forum) who started taking B1 for FM and noticed a big improvement in her energy levels.

I was recently looking over a test I had done quite a few years ago and it found that I was deficient in B1 but at the time nothing was done about it. The doctor I was seeing was more interested in the glutathione deficiency that the test also revealed.

I'm starting with 100 mg daily (along with B-Com 50) and increase it by 100 mg every five days. I doubt that I will notice any difference but I having nothing to lose giving it a try.

 

Did you notice a loss of energy once you stopped taking the high dose B1?

 

I came off them gradually over two or three weeks. Very soon after I stopped I could no longer walk up a slight slope outside my house.

 

Same here, back in 2016 or so. The effect was dramatic, from housebound to being able to walk reasonably comfortably for an hour. I also noticed an immediate effect on muscle weakness: within 10-15 minutes of taking a high dose I could squat and get back up with ease, something I couldn't do at all previously for many, many years. I can't remember why I had to quit taking it, I think it messed up my electrolytes.

 

I find it rather strange that almost everyone with a website who recommends thiamine is taking 100s of mg of thiamine. The recommended daily intake is 1.2mg per day.

I've taken 100mg thiamine per day in the past but was nervous of taking more. I've also tried benfotiamine (a fat soluble form of thiamine), and there are many other forms too :

https://en.wikipedia.org/wiki/Vitamin_B1_analogues

 

The people who are taking therapeutic doses of B1 aren't trying to fix a deficiency. It has something to do with "a dysfunction of the intracellular transport or due to enzymatic abnormalities, and responds favourably to high doses of thiamine". Some research has found that large doses of B1 can help with fatigue in MS, help people with Parkinson's tremors, reduce the pain of FM, reduce burning pain of neuropathy, and can increase energy levels in people with ME. However, that only happens with large doses. Taking 1.2 mg per day wouldn't do anything. My view is that it doesn't hurt to give it a try. I read yesterday of one person who after being on a high dose was able to eventually go down to 100 mg per day and still get the same effect.