Microbiome in CFS and ME

[Baz493]

Decades ago I experienced a year of chronic fatigue due to exposure to an industrial solvent called trichloroethylene. Years ago I was able to find research identifying specific changes which the solvent caused in cellular energy production. Yet recently I found this 2021 article linking the solvent to negative alterations in the microbiome. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8314436/ So I took another look at microbiome changes involved in CFS and ME. Two days ago this article was published. https://www.researchgate.net/public...ronic_fatigue_syndrome_a_retrospective_review The whole article is available, for free, on another site (commercial).

What I have been looking at, for my own health, relates to how antibiotic/toxic exposure/heavy metal induced reductions in healthy bacteria (such as butyrate producing bacteria and akkermansia muciniphila bacteria) leads to increases in pathogenic bacteria (such as clostridium difficiles and e-coli) and greatly reduced health and increased fatigue.

 

[Creekside]

While I don't believe that microbiome changes are the root cause of ME, I've experienced several episodes where gut microbiome changes did affect the severity of my ME. Last year I somehow (no obvious cause) apparently lost a critical colonic strain, resulting in worsening ME symptoms if I consumed fermentable dietary fibre. I eventually thought to try a probiotic, and luckily the 14-strain capsule had the right strain to fix the problem. I don't think that probiotics or FMTs will solve most people's ME, microbiome-modifying treatments could reduce the severity for at least some.

 

[Baz493]

I would never challenge Dr Ronald L Hoffman's perspective on CFS and ME; that they can be the result of numerous factors which cumulatively undermine the health. I think that microbiome changes are the consequence which generally prevents people from recovering once the initial factors have been resolved. Reading the figure 3 list of bacteria which tend to be increased in ME and CFS it's easy to see that they tend to be bacteria which produce more toxins than healthy substances. Those which are higher in healthy individuals tend to be bacteria which produce more healthy substances than toxins. I view it as being a lot like a see-saw, with too much toxin release being a weight on the fatigue side of the fulcrum and the specific toxins likely to determine whether someone is diagnosed with ME or not.

 

[Baz493]

While I don't believe that microbiome changes are the root cause of ME, I've experienced several episodes where gut microbiome changes did affect the severity of my ME. Last year I somehow (no obvious cause) apparently lost a critical colonic strain, resulting in worsening ME symptoms if I consumed fermentable dietary fibre. I eventually thought to try a probiotic, and luckily the 14-strain capsule had the right strain to fix the problem. I don't think that probiotics or FMTs will solve most people's ME, microbiome-modifying treatments could reduce the severity for at least some.

It appears that FMT has actually been used for ME with seven out of twelve patients achieving complete remission of symptoms even after fifteen to twenty years (section 2.6). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7826222/

 

[Ken Lassesen]

Microbiome as the ROOT Cause -- I agree is very unlikely. An infection as the root cause is more probable. The catch is that the infection changes the microbiome which start a cascading series of changes over time. The result is a STABLE DYSFUNCTIONAL microbiome that causes most of the symptoms and maintains ME/CFS.
See this table for which bacteria are associated with which symptoms.

 

[Baz493]

I'm uncertain whether toxic insults can cause ME but the CFS which I experienced decades ago was caused by trichloroethylene exposure. As this article explains, this can cause irreversible alterations in the microbiome; generally leading to autoimmune consequences. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6338528/ While most people who develop ME seem to have experienced infection I have to wonder about the people whose condition didn't seem to have involved the same cause.

The involvement of CD8 T cells in ME could indicate a reduction in microbiome production of short chain fatty acids, which normally help to regulate CD8 activity. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8249424/ The recent article, detailed in my first post, discusses reductions in levels of some of the bacteria which produce or are essential to production of short chain fatty acids, such as bifidobacterium, roseburia, faecalibacterium, and certain lactic acid bacteria. I used to focus on what the original cause of a disease was but have since learnt that health can be a bit like a magic trick; while you're watching one hand the other is moving everything around. I now see the microbiome as the other hand.

 

[Creekside]

It appears that FMT has actually been used for ME with seven out of twelve patients achieving complete remission of symptoms even after fifteen to twenty years (section 2.6).

I'm not up to digging into the veracity of those claims, but a lot of claims may be questionable as to whether the patients actually had ME. Early criteria encompassed a lot of people with non-ME disorders. Also, the people quoting those results may have cherry-picked their sources to make their own paper look better. There may be other studies that contradict the quoted successes.

The result is a STABLE DYSFUNCTIONAL microbiome that causes most of the symptoms and maintains ME/CFS.

I doubt that the gut microbiome is all that stable. If you eat grains and veggies for weeks, then have a big steak or eat a tub of ice cream, there should be fairly drastic changes in the bacterial populations. That should result in lots of PWME reporting significant changes in their ME symptoms or severities, but I haven't seen that. Cases where drastic changes in the microbiome do have significant effects are uncommon, but do show that it is possible. There are probably numerous cases where a PWME has had to undergo major cleaning out of their microbiome for surgery or whatever, and didn't lose their ME.

 

[Baz493]

Although there have been much more recent articles on the stability of the human microbiome this was the best that I could find on a non-commercial site. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3791589/ Despite the fact that the microbiome can be altered by dietary changes and toxic events the article, at the end of its prospectus, explains that the human microbiome is basically determined by "the impact of early colonization events on our microbiota in later life; early colonizers, such as those acquired from our parents and siblings, have the potential to provide their metabolic products and exert their immunologic effects for our entire lives." This indicates that most dietary and toxic changes are likely to have only short term effects on our health.

I have recently been considering the potential benefits of fecal microbiota transplants and whether their effects can significantly alter the microbiome over the long term. This article seems to indicate that it is possible. https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-015-0070-0 However there are inherent risks involved in such transplantation. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7280140/

 

[Sarabethn]

I recently completed a gut health protocol that is outlined in the Immunity Challenge, and it was very helpful. Hasn't reduced any ME symptoms but has calmed my gut!

 

[Baz493]

I recently completed a gut health protocol that is outlined in the Immunity Challenge, and it was very helpful. Hasn't reduced any ME symptoms but has calmed my gut!

If that's the ten day challenge that I could see online then it wouldn't have the slightest chance of significantly altering the microbiome in your colon. I have been taking a look at what I need to do to improve my own microbiome and it's not an easy task. Bacteria in the colon established themselves when we were in the first few years of our lives and it's very difficult for other bacteria to challenge them there. Because bacteria use biofilms to protect themselves inside us it sounds a lot like trying to storm a castle when foreign bacteria try to take over their territory in the colon. The rest of our gastrointestinal tract sounds as though it is much more malleable and I'm fairly certain that the gut health protocol is primarily aimed at improving those areas.

Trying to understand how I can try to help recolonization of the colon I have been focusing on including things like olive oil, rice bran oil, and macadamia oil as well as plant sourced vitamin C in my diet. Some of the fatty acids in the oils have been found to break down bacterial biofilms as has natural vitamin C (as opposed to the ascorbic acid found in vitamin C supplements). I did consider fecal microbiota transplant, which can be very effective, but it carries too many risks from my own perspective.

 

[MaximilianKohler]

I DO believe the gut microbiome is the root cause of most chronic conditions, including CFS. There is a two-way street between the gut microbiome and other functions, infections, etc., but the research overwhelmingly shows that FMT can correct those imbalances. Virtually everything seems to be downstream from the gut microbiome. So if you're not correcting gut dysbiosis you're not addressing the root cause.

I created this non-commercial resource that covers all of this, including CFS, a FAQ, and a page on FMT:

Introduction to the Human Microbiome - Human Microbiome Wiki

Articles, studies, podcasts, and more, covering the important role of the gut microbiome in every aspect of human health & development.

humanmicrobiome.info

FAQ - Frequently Asked Questions - Human Microbiome Wiki

Find out how to maintain or develop an optimal gut microbiome, or restore a damaged one. Covering interventions like prebiotics, probiotics, and FMT

humanmicrobiome.info

FMT - Everything to Know About Fecal Microbiota Transplants - Human Microbiome Wiki

Everything you need to know about Fecal Microbiota Transplants (FMT). Stool donors, screening, procedures, where to get FMT, safety, and outcomes

humanmicrobiome.info

Search my post history to see what I'm doing about it, and how others can help: https://www.healthrising.org/forums/search/27000/

Patient initiative: Screening half a million stool donor applicants to find FMT (Fecal Microbiota Transplant) super-donors

My history: web.archive.org/web/20220801072636/https://old.reddit.com/r/HumanMicrobiome/comments/8sv31e/my_detailed_experiences_lessons_from_8_different/ www.youtube.com/watch?v=6wi52tLjCps I've been following the microbiome research, doing FMTs, and trying to find a highly effective donor for...

www.healthrising.org

As you say, correcting the gut microbiome is not a simple task, for many reasons such as:

While antibiotic resistance gets all the attention, the damage being done to our host-native microbiomes is arguably as big a threat as climate change, as the damage compounds over generations, and once it's gone you can't get it back. (Apr 2019)

The solutions require political action worldwide, but this issue is largely being ignored. Martin Blaser's "Missing Microbes" is a fantastic, extremely important, layperson-friendly introduction to this issue. Humans are holobionts, and we are extincting the human race via antimicrobial abuse...

forum.humanmicrobiome.info

Which is why you can read in the link above that I've screened more than a million stool donor applicants without finding an ideal candidate.

 

[Baz493]

What I have been realising, after searching through the medical research, is that knowledge of which specific pathogens are causing your specific diseases makes a big difference to approach. My birth family has a history of gluten allergy and multiple sclerosis which both seem to heavily involve heliobacter pylori bacteria. When I cross-checked that bacteria with my own lifelong health issues it fit with the majority of them, though I believe that it's likely that another unidentified pathogen is likely to underlie a couple of other issues. There is so much research online about various foods which either kill or limit H pylori, eg; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7248673/ Watching a documentary on Japan last night they even detailed how wasabi's antibacterial properties are part of why Japanese live such long lives; https://pubmed.ncbi.nlm.nih.gov/15246236/ I've long loved wasabi so I'm really excited to try using it in my diet regularly. Knowing that it's essential to destroy the bacterial biofilm, in order to render the bacteria vulnerable, is likely the most important point in trying to repair the microbiome.

 

[MaximilianKohler]

I don't think that's correct. See:

FMT donor-matching and selection, screening for specific microbes, and pre-treatment/eradication. "Killing things off" vs suppression & ecosystem restoration.

Someone wrote to me about this. It's always better to discuss publicly so others can learn and weigh in. I have a strong suspicion which microbes are my problem based on test results and symptoms and I want to be sure that those microbes are not present in the donor stool. See...

forum.humanmicrobiome.info

H. pylori (Helicobacter pylori) and the Microbiome - Human Microbiome Wiki

Is H. pylori (Helicobacter pylori) a pathogen? Should we eradicate it? Does it have any benefits?

humanmicrobiome.info

 

[Baz493]

I don't think that's correct. See:

FMT donor-matching and selection, screening for specific microbes, and pre-treatment/eradication. "Killing things off" vs suppression & ecosystem restoration.

Someone wrote to me about this. It's always better to discuss publicly so others can learn and weigh in. I have a strong suspicion which microbes are my problem based on test results and symptoms and I want to be sure that those microbes are not present in the donor stool. See...

forum.humanmicrobiome.info

H. pylori (Helicobacter pylori) and the Microbiome - Human Microbiome Wiki

Is H. pylori (Helicobacter pylori) a pathogen? Should we eradicate it? Does it have any benefits?

humanmicrobiome.info

Unfortunately most of the microbes in our bodies have both good and bad sides to them and H pylori is no different. https://nihrecord.nih.gov/2022/04/15/scientists-reveal-good-bad-and-ugly-h-pylori https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5360666/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7874896/

From my own perspective the research into how H pylori, through the enzyme gamma glutamyltransferase, breaks down glutamine into glutamate and ammonia and glutathione into glutamate and glycine-cysteine tells me that it decreases levels of protective glutamine and glutathione while increasing levels of both ammonia and glutamate, which both have damaging effects on the body. There are too many other effects which H pylori can have upon the body, both beneficial and harmful, to cover here but I am aiming at reducing my own levels to a manageable size.

 

[Creekside]

Bacteria in the colon established themselves when we were in the first few years of our lives and it's very difficult for other bacteria to challenge them there.

It can be difficult to completely eliminate a strain, or establish a new one, but not impossible. My ME started as a type IV food sensitivity. It persisted for 2.5 years, during which I made many dramatic dietary changes and had several treatments with antibiotics (for tooth infections) which had no effect on my immune problem. Then I had a typical bout of food poisoning from spoiled coconut milk, which flushed my digestive system out quite well, and the next morning I no longer had that type IV reaction. I assume I removed enough of a problematic strain to allow the good strains to completely eliminate it. I suppose an alternative theory is that it established a new strain that corrected the immune response.

More recently, I suddenly developed an intolerance for fermentable dietary fibre. After about a year, I decided to try probiotics. Probably the first capsule reestablished the missing strain, and solved the intolerance. I didn't take antibiotics or anything else that would be likely to exterminate a bacterial strain, but somehow I apparently lost an important strain and didn't reestablish it from ordinary foods or licking my fingers or other sources of bacteria. I was simply lucky that the missing strain was one of the 14 in that probiotic capsule.

So my experience is that it is possible to gain an unwanted strain or lose a helpful strain, but it can also be difficult to do so, or as easy as swallowing a capsule. It all depends on the strain (and the existing microbiome) and the circumstances.

 

[GforGeorgie]

H. Pylori was the major cause of my 20 years of fibromyalgia with accompanying periods of CFS, I believe. There were certainly contributing factors (chronic stress, long term inadequate sleep, herpes virus, allergies etc) but my fibro and CFS have reversed as I've healed my gut over the past 5 years.

I believe I picked up H.Pylori whilst living in Thailand as a teenager. That's when the stomach aches and body aches began. My theory is that H.Pylori lead to maldigestion, SIBO, dysbiois, Candid overgrowth, nutrient deficiencies, gut permeability and food sensitivities. Over 20 years, this weakened my immunity and I was chronically inflamed. I was missing key beneficial bacteria and the difference it made when I introduced them was quite profound.
I spent years working to get the correct diagnosis. All the Dr's said my stomach aches were 'just fibro' but the last one I had was the day before I started antibiotics for H.Pylori. From there, the SIBO corrected itself but all the other problems have taken years of therapy and restrictive diets, at a huge cost.
I still am extremely selective in what I eat however, recent microbiome testing shows my diversity is very high. Something I am proud of and have worked hard for. My gut healing is ongoing and I'm working with a PhD Nutritionist at the cutting edge of this research. He's currently using me as a case study (which is great because I just got a free $550 microbiome test and additional consultation)

I didn't know about the H.Pylori - glutamate link but that makes perfect sense. I long suspected my nervous system was neurotoxic with too much glutamate.

These days I'm 90% symptom free. At my worst I was 9/10 severity with dozens of the symptoms and sensitivities that accompany fibro. I ended up on disability so it's wonderful to be pretty much fully functioning again.

 

[GforGeorgie]

Unfortunately most of the microbes in our bodies have both good and bad sides to them and H pylori is no different. https://nihrecord.nih.gov/2022/04/15/scientists-reveal-good-bad-and-ugly-h-pylori https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5360666/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7874896/

From my own perspective the research into how H pylori, through the enzyme gamma glutamyltransferase, breaks down glutamine into glutamate and ammonia and glutathione into glutamate and glycine-cysteine tells me that it decreases levels of protective glutamine and glutathione while increasing levels of both ammonia and glutamate, which both have damaging effects on the body. There are too many other effects which H pylori can have upon the body, both beneficial and harmful, to cover here but I am aiming at reducing my own levels to a manageable size.

I'd love to see some of the research pertaining to H.Pylori and glutamate, if you care to share.

 

[Baz493]

I'd love to see some of the research pertaining to H.Pylori and glutamate, if you care to share.

Sorry to hear what you've been through but glad to hear you worked it out. There are a lot of articles on the gamma glutamyltransferase and how it affects various diseases. This one is non specific so I thought it appropriate to commence with. https://pubs.acs.org/doi/10.1021/bi701599e This one however should give you what you're asking for. Right at the beginning it details what I previously mentioned about it breaking down glutamine and glutathione. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3921472/

 

[ChristianBonanno]

Microbiome as the ROOT Cause -- I agree is very unlikely. An infection as the root cause is more probable. The catch is that the infection changes the microbiome which start a cascading series of changes over time. The result is a STABLE DYSFUNCTIONAL microbiome that causes most of the symptoms and maintains ME/CFS.
See this table for which bacteria are associated with which symptoms.

The infections are the cause (for many), but why is it the cause?

Because to fight infections you need ATP and GTP. And to make and recycle ATP and GTP you need nutrients. And people with ME/CFS have either high genetic or nutritional need for these nutrients that act as cofactors for the enzymes that make and recycle ATP and GTP.

 

[Baz493]

The infections are the cause (for many), but why is it the cause?

Because to fight infections you need ATP and GTP. And to make and recycle ATP and GTP you need nutrients. And people with ME/CFS have either high genetic or nutritional need for these nutrients that act as cofactors for the enzymes that make and recycle ATP and GTP.

During the first four years of life our microbiomes are largely formed from microbes which we receive from our mothers, particularly during birth and breastfeeding, and other loved one's who handle us. Research shows that once we pass the age of four our microbiomes are largely established for how they will be throughout our lives. That will affect us for good and bad, depending upon which microbes we have received. Healthy bacteria produce substances which kill, or help our bodies to kill, pathogenic bacteria so the more healthy bacteria which we inherit then the healthier we are likely to be throughout our lives. Heavy metal or toxin exposures, antibiotics, and similar factors have the capacity to tip the balances towards more pathogenic bacteria.

90% of the cells in our bodies are microbial so it doesn't take much for a small imbalance towards pathogenic bacteria to impact our health. Substances produced by healthy bacteria help to maintain healthy energy production and cellular function throughout our bodies so once we have higher levels of pathogens we begin to get into trouble. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8281717/