Fecal transplants in ME/CFS

There's an article in The Telegraph that mentions this death after FMT. It's mostly an infomercial I think. Plenty of plugs for testing and clinics.

Secrets of the gut doctor: From faecal transplants to microbiome testing - the new treatments that could transform your entire health. By Victoria Lambert, 15 June 2019. Paywalled, but if you sign up for an account you can read one article a month for free.

Have you ever considered the trillions of teeming bacteria which are spinning around your gut right now, breaking down breakfast into human compost?

Well, prepare to get up close and personal. Thanks to a new era in affordable testing, anyone can have their personal colonies of bacteria – called the microbiome – tested and the results analysed to show just what the little critters are getting up to. If anything.

And the fascination with our insides doesn’t stop there – a new generation of gut specialists are offering ways to tune up our microbiomes via therapies from oral supplements to (steel yourself) human poo transplants.
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Kinda shows that, despite advances, we are still barely one step away from the dark ages in our medical knowledge, that we still have to rely on such barbaric sources to try to fix common problems.

I get it, bacteria are hard to handle and we barely know much about the microbiome so it's hard to determine how to go about differently, but this is still as primitive as it gets.

The next few years will be fascinating, overturning much of what we think we know and revealing all new truths about ourselves and nature.
 
Hi all. New to the board. I wonder if there are people here who have actually tried fecal transplants. I have run into several people in remission with it. I myself was able to get 30% improvement but have been sick a very very long time.
 
SomeoneTired said:
Hi all. New to the board. I wonder if there are people here who have actually tried fecal transplants. I have run into several people in remission with it. I myself was able to get 30% improvement but have been sick a very very long time.
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There is someone in my group who tried it but she said for her it was a big disappointment, although she had high hopes.
 
Thanks. I have some experience with it now and have spoken to many people. I think it can help and for some, even get them almost well again, but the majority cannot just do it a few times and be cured. They have to keep doing it because they do not yet know how to get permanent engraftment. So the people who say the improvements were temporary or it doesn't work, have to keep doing it and maybe use another donor. It is quite donor dependent. But I believe, if you are careful, this could be a pretty good option for us.

Some combine it with various types of diets, vagus nerve stimulation, and even brain retraining, and claim that the combination results in great improvements. I suspect calming the nervous system helps the microbiome via cortisol related mechanisms and perhaps others.

microbiome drugs given to people in hong kong, resulted in not one person getting long covid. clearly, we are missing key microbes.

another very intriguing theory is in the recent MS papers, which postulates that EBV triggers EBV-Induced Gene 2, which somehow results in lack of interferon being produced. This gene, in turn, can be down regulated by oxysterols produced by Clostridium cluster XIVa and IV, which we may be lacking. Indeed, these are abundant in "super donors"!

I also wonder if some viruses can harm the neuromodulatory cells in the gut, affecting motility and other things. Some papers say EBV, Ross River virus, Norovirus, and some others, can damage these cells...and these viruses also trigger cause me/cfs.... so maybe gastric emptying is delayed and bacterial overgrowth results?

Problem is more in small intestine I believe, because many report better results with FMT capsules rather than enemas.
 
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