WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome

[Rufous McKinney]

and during the last two weeks my condition has improved from moderate to mild.

how awesome.

how inspiring

 

[Mary]

@Mimicry - your experience with sodium butyrate is amazing - I'm going to try it! And thanks for specifying the dose and brand you're taking.

I googled sodium butyrate and found a reddit thread where the poster claimed that sodium butyrate triggered activation of EBV (with its accompanying horrible symptoms):

https://www.reddit.com/r/cfs/comments/11d0rvu

and then saw this study on PubMed:

Short, Discontinuous Exposure to Butyrate Effectively Sensitizes Latently EBV-Infected Lymphoma Cells to Nucleoside Analogue Antiviral Agents​

which I think is saying that the sodium butyrate will increase the efficacy of antivirals against EBV - infected lymphoma cells (@Rufous McKinney - you might find this interesting)

And then I saw this on Reddit too:

https://www.reddit.com/r/cfs/comments/113oq7f

My brain is quite fuzzy today (functioning on very little sleep) so i can't put all the pieces together (tbh, I would have trouble doing that anyways, sleep or no sleep!), but will keep an eye out for EBV-related symptoms when I start the sodium butyrate.

And btw, several sites mention that sodium butyrate can help with sleep . . . sounds too good to be true!

 

[MonkeyMan]

@Mimicry - your experience with sodium butyrate is amazing - I'm going to try it! And thanks for specifying the dose and brand you're taking.
And btw, several sites mention that sodium butyrate can help with sleep . . . sounds too good to be true!

Yes, thank you @Mimicry. The stuff you mention (BodyBio Gut Health Supplement) is also available on Amazon, BTW. I'm going to try it.

Speaking of the gut, I recently made a drastic change in my diet - cutting out all white flour, including pasta. Just 100% whole grains. And, since I made the change, my energy and bowel movements have drastically improved. (Plus, as a bonus, I quickly lost 5 pounds of belly fat!) Maybe related to the effects that you mentioned seeing with the sodium butyrate? I would encourage ANYONE with ME/CFS to try eliminating all white flour (including pasta), if you haven't already.

 

[SWAlexander]

Butyrate to combat obesity and obesity‐associated metabolic disorders: Current status and future implications for therapeutic use​

Evidence is increasing that disturbances in the gut microbiome may play a significant role in the etiology of obesity and type 2 diabetes. The short chain fatty acid butyrate, a major end product of the bacterial fermentation of indigestible carbohydrates, is reputed to have anti‐inflammatory properties and positive effects on body weight control and insulin sensitivity. However, whether butyrate has therapeutic potential for the treatment and prevention of obesity and obesity‐related complications remains to be elucidated. Overall, animal studies strongly indicate that butyrate administered via various routes (e.g., orally) positively affects adipose tissue metabolism and functioning, energy and substrate metabolism, systemic and tissue‐specific inflammation, and insulin sensitivity and body weight control. A limited number of human studies demonstrated interindividual differences in clinical effectiveness suggesting that outcomes may depend on the metabolic, microbial, and lifestyle‐related characteristics of the target population. Hence, despite abundant evidence from animal data, support of human data is urgently required for the implementation of evidence‐based oral and gut‐derived butyrate interventions. To increase the efficacy of butyrate‐focused interventions, future research should investigate which factors impact treatment outcomes including baseline gut microbial activity and functionality, thereby optimizing targeted‐interventions and identifying individuals that merit most from such interventions.

 

[WhiteLynx]

I've started to take TUDCA and sodium butyrate several weeks ago and haven't seen any improvements. But it's great that it helps other people.

 

[BrightCandle]

I've started to take TUDCA and sodium butyrate several weeks ago and haven't seen any improvements. But it's great that it helps other people.

One of the things I have learnt with supplements is it often unfortunately takes a month or more to see anything positive or negative. I wouldn't assess value in a shorter time frame than that for most of them unless you get a bad response quickly.

Saying that TUDCA has equally done nothing for me in several months and Sodium Butyrate I thought might have helped but like many things I got a boost for a while and it faded and no longer works.

 

[junkcrap50]

@Mimicry - your experience with sodium butyrate is amazing - I'm going to try it! And thanks for specifying the dose and brand you're taking.

I googled sodium butyrate and found a reddit thread where the poster claimed that sodium butyrate triggered activation of EBV (with its accompanying horrible symptoms):

https://www.reddit.com/r/cfs/comments/11d0rvu

and then saw this study on PubMed:

Short, Discontinuous Exposure to Butyrate Effectively Sensitizes Latently EBV-Infected Lymphoma Cells to Nucleoside Analogue Antiviral Agents​

which I think is saying that the sodium butyrate will increase the efficacy of antivirals against EBV - infected lymphoma cells (@Rufous McKinney - you might find this interesting)

And then I saw this on Reddit too:

https://www.reddit.com/r/cfs/comments/113oq7f

My brain is quite fuzzy today (functioning on very little sleep) so i can't put all the pieces together (tbh, I would have trouble doing that anyways, sleep or no sleep!), but will keep an eye out for EBV-related symptoms when I start the sodium butyrate.

And btw, several sites mention that sodium butyrate can help with sleep . . . sounds too good to be true!

Yes. Butyrate can re-activate latent EBV. But when it is done purposely to treat infections, IV butyrate is used, not oral. It is done to kill latent EBV infections.

The section "Targeting EBV Infected T-Cells" in this paper here discusses it: https://ashpublications.org/blood/a...ow-I-treat-T-cell-chronic-active-Epstein-Barr

See my post here too: https://forums.phoenixrising.me/thr...s-chronic-fatigue-syndrome.90582/post-2443539

 

[Alvin2]

I've started to take TUDCA and sodium butyrate several weeks ago and haven't seen any improvements. But it's great that it helps other people.

If it is going to work we don't know the dosages. Which is the worst, what if he need 5-10x the dosage. Who has the money to blow if it does not work until then?

 

[datadragon]

And btw, several sites mention that sodium butyrate can help with sleep . . . sounds too good to be true!

Yes, we discussed before in different threads -> https://forums.phoenixrising.me/thr...-sleep-insomnia-post-links.78501/post-2442576 and https://forums.phoenixrising.me/thr...-on-right-side-may-be-best.89827/post-2442473

butyrate is also found low in ME/CFS as confirmed by the NIH https://forums.phoenixrising.me/thr...s-chronic-fatigue-syndrome.90582/post-2443638
and an increase in butyrate is shown to be helpful for the PEM as discussed earlier in this topic. Zinc and Butyrate are both known to lower ER Stress as well. ER Stress increases WASF3 levels. High WASF3 disrupts Mitochondrial function while blocking ER stress lowered WASF3 levels and restored mitochondrial function according to the NIH.

It was recently found that Butyrate ameliorates quinolinic acid-induced cognitive decline in inflammatory obesity models https://pubmed.ncbi.nlm.nih.gov/36787221/ and previously, it was reported that butyrate improved memory in Alzheimer's Disease mouse models https://pubmed.ncbi.nlm.nih.gov/21593570

Sodium butyrate can also stimulate Cathelicidin LL-37 helping to improve immune response so it works on both sides. https://forums.phoenixrising.me/threads/ll-37-peptide.90615/post-2441670 short chain fatty acids including butyrate exert modulatory effects on intrinsic B cell functions even at moderate concentrations, thereby is what shapes normal and effective antibody and autoantibody responses. So that means that when butyrate is low it can cause the dysregulated antibody responses leading to generation of autoantibodies. https://forums.phoenixrising.me/threads/bc007-what-are-your-thoughts.87520/post-2441668

I've started to take TUDCA and sodium butyrate several weeks ago and haven't seen any improvements. But it's great that it helps other people.

Butyrate may have dose dependent different effects low vs high as found in rats https://pubmed.ncbi.nlm.nih.gov/24212060 It is helpful when posting your experience if you add brands and dosage and also if you are mild/moderate or severe. Zinc deficiency/unavailability which is caused from chronic inflammation/infection leads to a leaky gut according to the research, and subsequent changes in the microbiome composition and function toward a more inflammatory state with increased propionate (propionic acid) and decreased butyrate (butyric acid) are part of those downstream effects which is why I suggested that some may require something like zinc glycinate added. High WASF3 disrupts Mitochondrial function while blocking ER stress lowered WASF3 levels and restored mitochondrial function according to the NIH. Taking TUDCA and/or Butyrate alone may work on lowering ER Stress, lowering WASF3 levels, and therefore helping with those downsteam negative effects on mitochondrial function potentially, but wasnt sure if by lowering the inflammation alone would restore normal zinc availability as well or if needed for zinc to be taken also when inflammation is currently testing high since that also has numerous other functions that are being dysregulated and leading ongoing to the low butyrate state among many other things.

 

[hapl808]

butyrate is also found low in ME/CFS

So do you think something like the BodyBio sodium butyrate would be helpful for PEM and have you tried it?

 

[Mimicry]

I keep seeing sodium butyrate mentioned, would this work or does it have to be sodium butyrate?
https://villagevitaminstore.ca/products/genestra-sunbutyrate-liquid-280ml

I'm pretty sure that would work as well.

 

[Mimicry]

So, my improvements have plateau'd because I've triggered PEM too many times but I still feel better than I used to. It's difficult not to do too much when I finally have some good days. I also imagine that butyrate might have long-term benefits because it supposedly helps with leaky gut, which seems to be one component of PEM (https://www.healthrising.org/blog/2...-exertional-malaise-chronic-fatigue-syndrome/)

I also started taking TUDCA yesterday. I'm interested in seeing what it does.

 

[Mimicry]

I googled sodium butyrate and found a reddit thread where the poster claimed that sodium butyrate triggered activation of EBV (with its accompanying horrible symptoms):

https://www.reddit.com/r/cfs/comments/11d0rvu

Yikes, that is concerning! I haven't had any EBV type symptoms so far, just my usual PEM + migraine combos. I also have a bit of a sore throat but that's probably due to the dry air we have in the house because of the air heat pump.

I hope you don't get negative side effects like that either 🙏

 

[Mimicry]

I've started to take TUDCA and sodium butyrate several weeks ago and haven't seen any improvements. But it's great that it helps other people.

I think it's entirely possible that they just don't work for you, unfortunately. There seem to be different subgroups in ME and it seems like everyone needs to find the supplement stack that works for them, there's simply no one-size-fits-all treatment. Like, around 30% of ME patients have autoantibodies against muscarinic acetylcholine and alpha adrenergic receptors and they might benefit from immunoglobulin or apheresis treatments. Some people find that LDN or LDA helps them a great deal (whereas I haven't benefited from either of those). Some people benefit from antivirals, etc etc. We don't really know enough about this illness to make more than assumptions and educated guesses yet. we just throw things at it and hope something sticks.

I've been going through dozens and dozens of supplements during the years I've been sick. Some helped for a while but stopped working after a couple weeks. So far butyrate seems to have worked for the longest but who knows if it will also stop working?

That being said, I really hope you find something that works for you too 🙏🫂

 

[Mimicry]

A quick update... It now seems that the injectable migraine med I'm on (Ajovy) has worsened my condition and made my migraines, lightheadedness, nausea and brain fog (among some other symptoms) worse. I took my second dose twelve days ago and it's all come crashing down after that, but I had been declining even after the first dose, I just didn't connect the dots before the second dose. It's a pity because before I started it in mid October I was doing so much better due to the butyrate. I really hope I can get back to that level.

 

[BrightCandle]

A quick update... It now seems that the injectable migraine med I'm on (Ajovy) has worsened my condition and made my migraines, lightheadedness, nausea and brain fog (among some other symptoms) worse. I took my second dose twelve days ago and it's all come crashing down after that, but I had been declining even after the first dose, I just didn't connect the dots before the second dose. It's a pity because before I started it in mid October I was doing so much better due to the butyrate. I really hope I can get back to that level.

That is a real shame. I found it null impact, I got better while I was on it but as I pulled off other drugs I got worse and realised it wasn't what was causing the improvement. CGRP is not the answer for us in my experience, not even for our migraines let alone the rest.

 

[Rufous McKinney]

Some people find that LDN or LDA helps them a great deal (whereas I haven't benefited from either of those). Some people benefit from antivirals, etc etc. We don't really know enough about this illness to make more than assumptions and educated guesses yet. we just throw things at it and hope something sticks.

I think somehow us patients should try to come up with What Are these Potential sub groups.

LDN helped me: somewhat, and I keep taking it,(and currently I'm waiting for a new shipment and taking it only every four days because I am running out)

 

[Rufous McKinney]

Short, Discontinuous Exposure to Butyrate Effectively Sensitizes Latently EBV-Infected Lymphoma Cells to Nucleoside Analogue Antiviral Agents

I don't understand this EBV/Lymphoma connection.....

but when I was tested, they reported back that the b-cell lymphoma I have developed, is not related to EBV.

Something was reported about all that in the biopsy they did.

Since I've attributed everything wrong here, for decades, to Chronic Epstein Barr, that flummoxed me and I've not understood this ever since.

now the issue is: can I find this thread again, in the future? I have to remember whats in the title... WASF3

repeat

 

[Mimicry]

That is a real shame. I found it null impact, I got better while I was on it but as I pulled off other drugs I got worse and realised it wasn't what was causing the improvement. CGRP is not the answer for us in my experience, not even for our migraines let alone the rest.

Yeah, CGRP is an important peptide in the nervous system (AFAIK it works in the parasympathetic nervous system and stimulates vagus nerve but I can't be arsed to look it up again, lol) and blocking it can result to all kinds of weirdness. I still think I'm gonna try another CGRP blocker because I've heard that even if one doesn't work for you, another one might work perfectly.

One of my acquaintances here in Finland who also has ME said that donepezil helped her chronic headache (and other symptoms) a lot. It's an Alzheimer med that improves acetylcholine function and she said it felt like it immediately improved the blood flow in her brain. I'm planning to ask my neurologist if I could try it but I'm 90% sure he won't approve of it because he works in public healthcare and their hands are pretty much tied when it comes to more experimental treatments.

 

[JasonPerth]

Might be a stupid question, but uf we found a cure for this PEM issue, will we still cure MECFS and Improve Baselines or still be stuck?

What about new structure issues like Enlarged Brain Stems that we all have ? Will they just disappear and the brain fix itself (Griffiths Uni, Qld 2022)