Thread by @JeffLubell_C19

I have tried to assemble the evidence base to support conducing an RCT of high-dose thiamine for people with #MECFS, #Fibromyalgia and #EDS. I would appreciate feedback on whether the case has been made, and if not, what additional evidence would help.

I document existing RCT evidence (for IBD fatigue) and hypotheses for why it could work for people with ME/CFS, Fibromyalgia and EDS here: healthrising.org/blog/2021/04/1… . More technical discussions here: medium.com/eds-perspectiv… and here: medium.com/eds-perspectiv…

Most recently, I summarize results of survey of retrospective use of high-dose thiamine among 55 people w/ #MECFS, #Fibromyalgia and #EDS here: healthrising.org/blog/2021/06/0… . Key graph below:

In brief, about two-thirds report large improvements from high-dose thiamine and another 5% report modest improvements. Largest reported effects are in reducing fatigue, post-exertional malaise, and brain fog.

14.5 percent report no improvement, 9.1 percent report a mix of improvements and worsening of different symptoms and 5.5 percent of respondents report that high-dose thiamine has made them feel worse.

Respondents report a range of side effects, mostly mild. While more than 70% of people who identify as having MCAS report improvements, a small number report substantial worsening of MCAS symptoms, suggesting care should be exercised by people with severe MCAS or an active flare

Results were strongly positive for most subgroups with the exception of people who identify as having ME/CFS and POTS but not Fibromyalgia and EDS. 40% of this group report no improvement, suggesting they may need a different treatment approach.

Limitations: small and non-representative sample; self-reported results; exposure duration and dosage varied substantially across sample. I am the parent of a child who has tried high-dose thiamine. I work in social sciences but do not have medical training.

I hypothesize results are due to the inhibition of carbonic anhydrase isoenzymes, which produces carbon dioxide, leading to increased oxygen available for aerobic respiration (through Bohr effect), lactate clearance, and blood flow to brain. Also reduced CSF lowers ICP.

Others have hypothesized results due to problem with active transport of thiamine; high blood concentration causes passive transport into cells. Dr. Lonsdale suggests long-term thiamine deficiency requires extended treatment to re-train body to absorb thiamine.

Note that results of high-dose thiamine in the IBD RCT and in Costantini's earlier pilot work did not depend on the finding of a thiamine deficiency. For evidence of high-dose thiamine's property as a carbonic anhydase inhibitor see pubmed.ncbi.nlm.nih.gov/22145674/

Happy to share anonymized data with researchers interested in investigating further. Some additional responses have come in since the analysis file for the article was drawn; results of larger file are mostly consistent with article.

My questions: (a) is there sufficient basis to proceed with an RCT? (b) who would conduct it? (c) who would fund it? (d) if insufficient funding is available for RCT with people with ME/CFS, would it make sense to start with people with #LongCOVID for which research $s available?

Seeking feedback. Please scroll up for full thread. @CfSforMECFS
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