Studies find that microbiome changes may be a signature for ME/CFS

[SWAlexander]

Researchers have found differences in the gut microbiomes of people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) compared to healthy controls. Findings from two studies, published in Cell Host & Microbe and funded by the National Institutes of Health add to growing evidence that connects disruptions in the gut microbiome, the complete collection of bacteria, viruses, and fungi that live in our gastrointestinal system, to ME/CFS.

“The microbiome has emerged as a potential contributor to ME/CFS. These findings provide unique insights into the role the microbiome plays in the disease and suggest that certain differences in gut microbes could serve as biomarkers for ME/CFS,” said Vicky Whittemore, Ph.D., program director at NIH’s National Institute of Neurological Disorders and Stroke (NINDS).

ME/CFS is a serious, chronic, and debilitating disease characterized by a range of symptoms, including fatigue, post-exertional malaise, sleep disturbance, cognitive difficulties, pain, and gastrointestinal issues. The causes of the disease are unknown and there are no treatments.
Continue: https://www.nih.gov/news-events/news-releases/studies-find-microbiome-changes-may-be-signature-mecfs

 

[Dude]

If we are low on butyrate, Iam wondering if taking butyrate as a pill would have a positive effect?

 

[BrightCandle]

If we are low on butyrate, Iam wondering if taking butyrate as a pill would have a positive effect?

At the doses on the bottle I am not getting much benefit, not in gut behaviour nor overall energy. You can get butyrate in a few different forms and I tried Sodum Butyrate, maybe one of the other formulations will work.

 

[Elizabeth3333]

I’m trying sodium butyrate. Too soon to tell if there’s a change.

Is fecal transplant the only way to get F. prauznitzii? Can’t find any probiotics with it. Only this site you can buy it for laboratory use: https://www.atcc.org/products/27766

Oh here’s the article btw: https://www.cell.com/cell-host-microbe/fulltext/S1931-3128(23)00029-X

Would be curious to hear other people’s thoughts…

 

[BrightCandle]

[QUOTE="Elizabeth3333, post: 2425850]
Is fecal transplant the only way to get F. prauznitzii? Can’t find any probiotics with it. Only this site you can buy it for laboratory use: https://www.atcc.org/products/27766
[/QUOTE]

It's killed by oxygen which makes it very hard to capture and transfer. It also means it probably won't survive fecal transfer either. I see no practical way to get more into our guts than grow what is already there. Given the recent report suggesting that oxygen is getting into our guts it may be the reason this species is rare, we probably need to look towards other butyrate providers.

 

[Consul]

El-Salhy et al makes the donor freeze the fecal immidiately after arrival in their studies. Its quite possible that this technique makes more anaerob bacteria survive. They also place the fecal at the start of the small intestine via a cable instead of having someone eat a pill. Also they use what they call a super donor with perfect health and gut health. They had huge results in their studies on ibs.

 

[Elizabeth3333]

What bacteria is not killed by oxygen, but produces butyrate?

 

[JoeS]

I’m trying sodium butyrate. Too soon to tell if there’s a change.

Is fecal transplant the only way to get F. prauznitzii? Can’t find any probiotics with it. Only this site you can buy it for laboratory use: https://www.atcc.org/products/27766

Oh here’s the article btw: https://www.cell.com/cell-host-microbe/fulltext/S1931-3128(23)00029-X

Would be curious to hear other people’s thoughts…

My F.prauznitzii went from 0.2% to 21% with Kiwi Actizan.

https://pubmed.ncbi.nlm.nih.gov/29152256/

 

[Elizabeth3333]

My F.prauznitzii went from 0.2% to 21% with Kiwi Actizan.

https://pubmed.ncbi.nlm.nih.gov/29152256/

Do you have a link to exactly what you took?

 

[Elizabeth3333]

My F.prauznitzii went from 0.2% to 21% with Kiwi Actizan.

https://pubmed.ncbi.nlm.nih.gov/29152256/

Did your ME/CFS symptoms improve with this increase of F. Prauznitzii?

 

[JoeS]

Enzymedica, Kiwi Regularity, Kiwi , 30 Relief Chews (iherb.com)

Yes, my symptoms improved, especially fatigue.

 

[Lilliand]

My F.prauznitzii went from 0.2% to 21% with Kiwi Actizan.

https://pubmed.ncbi.nlm.nih.gov/29152256/

How do you test for that? Does a dr test for that?

 

[lyran]

The description says "15+ Kiwis in Every Bottle" and the bottle has 30 tablets. Does this mean that one tablet is equivalent to ~1/2 kiwi fruits?

Why not then just eat kiwi fruits for a fraction of the price? or am I missing something?

 

[Elizabeth3333]

I just bought these https://www.sunday.de/en/livaux-capsules.html

Hope they’re just as effective

 

[MonkeyMan]

I just bought these https://www.sunday.de/en/livaux-capsules.html Hope they’re just as effective

I just ordered these 2 products from Amazon -

A bacteriophage (to gobble up the bad bacteria and make room for more good guys)
Gold kiwi powder (for the reasons discussed in this thread)

Also, I've been taking heaping tablespoons of this ripe banana powder everyday, and it definitely helps with my bowel function, and possibly my energy.

Just to put all this in context, my ME/CFS started when I was taking heavy extended doses of oral tetracycline antibiotics to treat my acne. All that tetracycline caused severe, prolonged intestinal dysbiosis / candidiasis, which in turn caused the ME/CFS that I've battled now for nearly 40 years.

 

[MonkeyMan]

The description says "15+ Kiwis in Every Bottle" and the bottle has 30 tablets. Does this mean that one tablet is equivalent to ~1/2 kiwi fruits? Why not then just eat kiwi fruits for a fraction of the price? or am I missing something?

Good question! A few thoughts:

1. It's clear from the research article @JoeS published that gold kiwi is beneficial. It's not clear to me if green kiwis are, and at least around here, green is all I can find.
2. Raw fruit is, at least for me, very difficult to digest and often aggravates my bowel issues.
3. It's just so darn easy to pop a pill!

 

[BrightCandle]

How do you test for that? Does a dr test for that?

No doctors don't do microbiome tests. You need a dna test and the one I had done was biomesight. They have an offer on for Covid Long haulers if you suffering that its half price and you enter into their study, otherwise its ~$150.

 

[MonkeyMan]

How do you test for that? Does a dr test for that?

No doctors don't do microbiome tests. You need a dna test and the one I had done was biomesight. They have an offer on for Covid Long haulers if you suffering that its half price and you enter into their study, otherwise its ~$150.

You can also get this test, which as you can see from this sample report includes Faecalibacterium prausnitzii.

 

[MonkeyMan]

https://www.nih.gov/news-events/news-releases/studies-find-microbiome-changes-may-be-signature-mecfs

I'm skeptical of these study results. My Genova stool test results show that I'm abnormally HIGH on F. prausnitzii AND on many measures related to butyrate.

 

[BrightCandle]

I'm skeptical of these study results. My Genova stool test results show that I'm abnormally HIGH on F. prausnitzii AND on many measures related to butyrate.

My skepticism goes further, on the NIHs own criteria. The NIH rejected the Nanoneedle as a biomarker because it wasn't clear how it was related to the disease process. Given multiple ME/CFS people have raised their bacteria naturally and its not cured them it would seem the relationship between biome and condition is not understood. If it was that easy we all chomp down some Kiwi fruits for a few weeks. So its actually a bad biomaker, worse than many others suggested especially since these types of changes aren't the same in all patients and they are present in other diseases. I feel like the NIH just abandonned their primary arguments to push two studies that don't on the face of things seem like anything but a replication of something we have known for 5 odd years and have not led to any usable treatment so far.