ANOTHER INDICATION THAT GUT MICROBIOME MAY PLAY LARGER ROLE THAN BELIEVED IN M.E./CFS

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A few of us have long harbored the suspicion that disaffected, damaged or diminished gut bacteria may play a larger role in this busy little burrowing badger of an illness (I'm looking at you @ljimbo423) than anyone's hitherto given it credit for.

This, in spite of the relatively pronounced incidence of IBS issues in our community, along with other digestive disruptions like slow motility and gastroparesis (serious slow motility), SIBO, leaky gut as well as others, possibly even sensitivity to B vitamins, many of which are produced in the gut by bacteria, and other supps that we seem to show sensitivity to.

Now, a Canadian experiment has linked the effects of stress, and the subsequent damage to the immune system, to Crohn's disease.

It's not a huge leap to expand that to other chronic autoimmune and inflammatory illnesses, or others, including ours.

Is stress to blame for Crohn's disease? Anxiety hormones impede the body's ability to fight off bad gut bacteria by disabling immune cells and causing the inflammatory disease, study suggests
https://www.dailymail.co.uk/sciencetech/article-10378537/Health-Stress-contribute-flare-ups-Crohns-disease-weakening-innate-immune-system.html
 
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There's likely a link, but whether it's cause or effect--or even cause and effect--isn't known yet. If, for example, ME's root cause was neuroimmunological, it could still cause gut issues, which could in turn worsen other ME symptoms. I'm not aware of having any significant gut issues. Maybe do a poll asking how many of us don't have significant gut issues?
 
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Maybe do a poll asking how many of us don't have significant gut issues?
The thing is, not having IBS or gut issues doesn't mean that someone with ME/CFS don't have dysbiosis and/or leaky gut.

I've heard functional medicine doctors that specialize in SIBO and gut dysbiosis, say that some of there patients don't have any gut symptoms, but have dysbiosis, leaky gut and systemic symptoms, which are very much like ME/CFS. Like brain fog, aches and pains, fatigue, etc.

ME/CFS researcher Mady Hornig has a video out that shows ME/CFS patients with, and without IBS. She shows that both groups had significant gut dysbiosis, although caused by different types of bacterial imbalances, and dysbiosis often causes leaky gut.

I actually think it works both ways, so to speak. From the bottom up and from the top down.

I think dysbiosis and leaky gut can cause brain abnormalities. Maybe by activating sensitized microglia in the brain via lipopolysaccharides from a leaky gut, or by inflammation activating the vagus nerve in the gut, as Michael VanElzakker said in one of his latest videos, which signals the brain of inflammation in the gut, activating microglia.

I also think a dysfunctional brain from sensitized/activated microglia, and/or stress can cause dysbiosis and leaky gut. So it could be working both ways. One feeding the other.
 
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The thing is, not having IBS or gut issues doesn't mean that someone with ME/CFS don't have dysbiosis and/or leaky gut.
True, but I would expect dysbiosis and/or leaky gut to be noticeable in at least some ways, such as responses to foods and diets. I'm sensitive to various foods and chemicals, but nothing that makes me believe that they are due to gut issues.
 
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I am not really even sure how to fix this. I have spent the last year trying to work on my gut from large amount of probiotic pills to the past 5 months taking in active foods 3-4 times a day with a significant amount of my calories coming from probiotic foods. I will do another microbiome test at some point but all impacts it had were fairly quick from the dietry changes and nothing much since. Its not like I am in severe stress at the moment, nor was I when ME happened. Honestly I think the stress is just speak for neuroligical conditions that are caused by the disease.
 
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I am not really even sure how to fix this. I have spent the last year trying to work on my gut from large amount of probiotic pills to the past 5 months taking in active foods 3-4 times a day with a significant amount of my calories coming from probiotic foods.
I've been doing some pretty heavy gut interventions for 4-5 years now and my gut is still messed up. I've been doing low carb, probiotics, and herbs to kill off inflammatory bacteria, with very little improvement.

Whatever is causing our guts to be messed up, it often seems very difficult to fix with diet and supplements.
 
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Wishful

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I've heard functional medicine doctors that specialize in SIBO and gut dysbiosis, say that some of there patients don't have any gut symptoms, but have dysbiosis, leaky gut and systemic symptoms, which are very much like ME/CFS. Like brain fog, aches and pains, fatigue, etc.
Okay, I've thought about this and now wonder: what sorts of tests do these doctors do that verifies gut disorders in people without noticeable gut symptoms? I'm not feeling any desire to go to my doctor to ask for gut disorder tests; I really doubt that he'd even refer me to a specialist given that I don't have any gut complaints. If he did, I'm pretty sure that the tests wouldn't show any problems. I don't trust alternative medicine doctors who specialize in diagnosing disorders that can't be verified by conventional tests.
 
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Okay, I've thought about this and now wonder: what sorts of tests do these doctors do that verifies gut disorders in people without noticeable gut symptoms? I'm not feeling any desire to go to my doctor to ask for gut disorder tests; I really doubt that he'd even refer me to a specialist given that I don't have any gut complaints. If he did, I'm pretty sure that the tests wouldn't show any problems. I don't trust alternative medicine doctors who specialize in diagnosing disorders that can't be verified by conventional tests.
Microbiome tests although I doubt most doctors do anything with them or know what to do with the results. I did a biomesight test. There are a lot of individual dysfunctions but the common one that we all seem to have is too little Faecalibacterium prausnitzii. https://www.healthrising.org/blog/2021/11/24/butyrate-chronic-fatigue-syndrome-long-covid-bacteria/ may be of some interest.
 
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Okay, I've thought about this and now wonder: what sorts of tests do these doctors do that verifies gut disorders in people without noticeable gut symptoms?
I don't know all the tests they do, but some are the same gut tests that people do here, including SIBO tests and other general gut microbiome tests.

Sometimes they don't even test. From experience they are familiar with the symptoms of brain fog, aches and pains and fatigue as often being caused by SIBO/dysbiosis or leaky gut.

The real proof comes when the patients symptoms improve or are gone from treating their dysbiosis.

I don't trust alternative medicine doctors who specialize in diagnosing disorders that can't be verified by conventional tests.
I respect that you don't trust alternative medicine doctors that do testing outside of conventional medicine, many people don't.

Edit- Actually there are tests that alternative medicine doctors do, that I don't trust myself.
 
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seamyb

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Has anybody tried lots of different prebiotics simultaneously and over long periods?

I heard a podcast where this doctor (PhD rather than MD) that specialises in the gut microbiome was talking about treating dysbiosis. He said probiotics do not recolonise the gut. He said often levels of a certain bacteria can be below the sensitivity of the test. When people are treated with prebiotics, if the levels rise then all well and good, but if they don't then they are extinct in that species. Apparently there is no way back from this, although treating with probiotics forever can help to serve the function of the missing bacteria. Some strains can stick around for a few weeks, but that's the height of it.

Apparently a wide variety of prebiotics are needed to feed a range of different bacteria. Not all bacteria can be fed from a given fiber.

I am certain there's a gut element in my illness. I strongly suspect dysbiosis. I'm going to start on prebiotics, fibers, resistant starches etc etc. I'm interested to hear experiences.
 
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When people are treated with prebiotics, if the levels rise then all well and good, but if they don't then they are extinct in that species. Apparently there is no way back from this, although treating with probiotics forever can help to serve the function of the missing bacteria.
That seems a bit ... simplistic. Actually, to me it sounds like soothing nonsense a doctor might say to cover the fact that he doesn't really know what he's doing. I don't think there is an absolute correct-for-everyone microbiome. Maybe one person doesn't have a particular strain in the same numbers as someone else. That might mean that their microbiome is optimized for their particular diet and gut and body. It could mean that their microbiome does cause health problems and can't be simply corrected. We're just at the beginning of understanding our microbiomes and how to identify problems and correct them.

As for a specific strain being unable to remain at a healthy level, that could change at any time, since bacteria swap genes, and phagocytes change too. I do wonder just how dramatically the gut microbiome changes during a typical day. Does eating a blueberry/banana bran muffin instead of bacon&eggs result in major changes in strain proportions? Maybe in a few more decades of research we'll be able to answer that question.
 

JES

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Speaking of tests, I recently did one of those microbiome tests. Attached is a snapshot of the result summary I got.

It is true that these tests are somewhat unreliable and I reckon people have submitted to different companies and got quite different results. For me the main hassle was actually getting the test done and following all the procedures to ship within deadline etc. Without getting into TMI category, the test I did required to keep track of around 10 tubes from samples of different days and make sure you ship just in time for some of the more sensitive test samples to stay fresh. The first time it failed due to shipment not reaching destination country in time, so I had to redo everything. Now that I got the results, there were a few takeaways.

The probably most useful thing this test discovered was one intestinal parasite species (D. Fragilis) via PCR. I actually recently finished a treatment course for this, which I reckon was worth doing even though eradication of parasites is quite difficult and actually, it doesn't seem that likely this had anything to do with my ME/CFS symptoms.

Regarding the rest of the results, it gets harder to interpret. I was found to have basically no inflammation, which is good, but overgrowth in most of the commensal bacteria, notably among the bacteroidetes and proteobacteria phyla. F. prausnitzii was actually high outside reference range, which goes completely opposite to what some ME/CFS studies have found.

I guess my conclusion would be, like lots of other tests there is some value, but main obstacle is lack of know-how in how to interpret and provide treatments for detected problems, like so often seems to be the case in ME/CFS.
 

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Actually, to me it sounds like soothing nonsense a doctor might say to cover the fact that he doesn't really know what he's doing
It must be terribly frustrating for him to have earned a PhD in a subject only to be bumped down to "not really knowing what he's doing" in a single internet comment.
 
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It must be terribly frustrating for him to have earned a PhD in a subject only to be bumped down to "not really knowing what he's doing" in a single internet comment.
It depends on the kind of PhD he is. Some get high marks by being good at taking exams, but being terrible at applying knowledge. At this point, I don't think there's enough knowledge about microbiomes and how they interact with the body for anyone to be considered 'knowing what he's doing'. Healers in 1200 AD managed to successfully treat some diseases by random chance and paying attention to what did work, but they didn't know about chemicals or cell functions or what was really going on in the bodies. I think diagnoses and treatments for microbiome disorders is presently in a similar state. It is increasing rapidly, but it's still just a lot of guesswork, and there will be lots of mistakes made.
 
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Some get high marks by being good at taking exams, but being terrible at applying knowledge
PhDs don't involve taking exams, they involve publishing papers by applying knowledge and creating more.

Regardless, a lot is known about the gut microbiome. It's known, for example, that bilirubin is further detoxified in the gut by bacteria and that an absence of this bacteria leads to jaundice, even where the liver is fully functional.

The importance of the gut microbiome isn't even questionable, despite the infancy of the field. And the quote you made of mine isn't even anything that is difficult to verify through experimental methods.
 
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And the quote you made of mine isn't even anything that is difficult to verify through experimental methods.
It's the "Apparently there is no way back from this, " part that bothers me. I'm certainly no expert, but I find it hard to believe that such a complex, ever-changing system can never regain a population of a specific strain. Even if the person had a strong phagocyte targeting that strain, mutations and gene swapping occurs, which could lead to a strain surviving. There's certainly no guarantee that a single probiotic capsule will restore a population, but given enough time and changes, I don't see why it should be impossible.
 
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Regardless, a lot is known about the gut microbiome.
There may be a lot known, but there's probably a vastly larger amount unknown. The interactions between microbes and the body are just too complex for quick understanding. We might know a lot about larger specie ecologies too, but we still have lots to learn. After overfishing the east coast cod stocks, they then overfished the fish species that cod fed on, which prevented the cod from reproducing quickly. Whodathunkit? I expect similar mistakes to be made with human microbiome management. Some people might abnormal numbers of <specific strain> for a good reason.
 
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Any field that is in its infancy, by definition is full of unknowns. Whenever people speak about the microbiome (or ME/CFS for that matter) with certainty, I get very suspicious. Some people get better from CFS, some don't. Some people take antibiotics once and have lifelong gut problems. Some people take antibiotics every time they get a cold and never have digestive problems. Why? Who knows. Hopefully we will learn more. It seems like a very important area, but one in its infancy as far as study and actionable knowledge.
 
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Has anybody tried lots of different prebiotics simultaneously and over long periods?
I've tried various prebiotics, along with specific strains of three probiotics useful to restabilize the gut after heavy use of herbal antibiotics, and it worked pretty well. But it was an intervention, not an absolute cure. It helped my gut pull itself together after the onslaught of olive leaf, oregano oil, etc, that helped me defeat another, different, issue.
He said probiotics do not recolonise the gut.
From everything Ive read, and I've read a reasonable amount in this area, probiotics WILL NOT colonize the gut, no matter how heavily they're sold as CFU's (colony forming units). In many cases, they can further destabilize an already tenuous situation.


As a temporary intervention they work well, but most of the time they're not a permanent solution.

Prebiotics, on the other hand, can be extremely helpful in supporting and expanding the gut's native, commensal flora.
I don't think there is an absolute correct-for-everyone microbiome.
There isn't. There are some strains that may be generally universal in similar populations, but the gut flora is commensal, established pretty much at birth, passed along by the mother in everything frm the uterus to the birth canal to breast milk, which is why breast feeding is so important, no matter what the baby formula companies say in their adverts.
That might mean that their microbiome is optimized for their particular diet and gut and body
That, and all the above. The habitual diet will optimize some strains and starve others. That's why prebiotics can be so helpful on a longer term basis, as opposed to the temporary help from probiotics.
As for a specific strain being unable to remain at a healthy level, that could change at any time, since bacteria swap genes, and phagocytes change too.
If it changes, its because it mutates due to exogenous factors, which means that it wouldnt be exactly the same strain.
I'm certainly no expert, but I find it hard to believe that such a complex, ever-changing system can never regain a population of a specific strain
I think I agree. Your most native, commensal microbiome will usually be able to fight thru and win out in the end. At least I hope so.
Even if the person had a strong phagocyte targeting that strain, mutations and gene swapping occurs, which could lead to a strain surviving.
As I said above, under a strong assault by other bacteria or absorption by phagocytes, whatever survives may not be the exact same thing it was prior to attack, and definitely not in the same numbers.
There's certainly no guarantee that a single probiotic capsule will restore a population,
Totally agree. In fact, there's compelling research that proves that ingesting probiotics can actually disrupt your native microbiome, and start a nasty little nuclear war in your gut, as your native microbiome tries to evict the foreign invaders.


Another deep and mysterious subject with no clear answers, and a lot of vested interests fighting to promote the financial survival and future of their particular product.