Reduced diversity and altered composition of the gut microbiome in individuals with ME/CFS

[msf]

Hmm, I wonder if any bacteria that hang out in the mouth can cause ME. Anyway, I will stop derailing this thread now.

 

[kangaSue]

I agree - although I would like to know what effect FMTs have on people who can´t tolerate probiotics, I am not willing to try it myself, for a couple of reasons!

An acquaintance with severe gastroparesis could not tolerate any sort of probiotic, or most foods for that matter, but had no reaction at all to doing d.i.y. FMT which curbed their nausea, vomiting and abdominal pain virtually overnight and helped them in being able to tolerate a wider variety of previously problematic foods. Unfortunately the beneficial effect only lasted for about 3 months even with continuing with weekly infusions but they didn't encounter any other complications in a six month period of doing FMT.

Oh, and it wasn´t just anecdotal, there was that study that someone posted the link for above, although that was bacteriotherapy rather than FMT.

Bacteriotherapy gets used interchangeably for FMT in some quarters.

 

[Snow Leopard]

Has anyone read this study? Thoughts?
https://www.researchgate.net/public..._Syndrome_A_summary_of_bacteriotherapy_online

 

[MeSci]

Has anyone read this study? Thoughts?
https://www.researchgate.net/public..._Syndrome_A_summary_of_bacteriotherapy_online

Is it the same as http://www.cdd.com.au/pdf/publicati...robiome and its role in CFS - ACNEM paper.pdf Sorry, I'm not very compos mentis.

 

[Snow Leopard]

Is it the same as http://www.cdd.com.au/pdf/publications/All Publications/2013 - The GI microbiome and its role in CFS - ACNEM paper.pdf Sorry, I'm not very compos mentis.

Yes it is and I have discovered a bit of discussion about it on the forum from a few years ago.

 

[ruben]

Does this all indicate then, that at the minute FMT represents probably the best way forward. I did actually have FMT in England last summer, but didn't work. From what I gather though follow-up treatments can often do the trick.

 

[kangaSue]

Yes it is and I have discovered a bit of discussion about it on the forum from a few years ago.

http://forums.phoenixrising.me/index.php?threads/fecal-transplant-study-58-70-response-rate.20430/

I did actually have FMT in England last summer, but didn't work. From what I gather though follow-up treatments can often do the trick.

Did you do a 10 day series or just a one off? A one off can work well for C. diff but it sounds like a series at regular interval can work for other conditions.
I see some with Crohn's or Ulcerative Colitis get remission only after several months of weekly infusions. Some of those doing FMT d.i.y. found they got a result from changing to a different donor too so there can be some compatibility issues by the looks of things.

 

[CaptainA]

Well this timely article came out today. It could back some of these thoughts up: http://www.eurekalert.org/pub_releases/2016-07/mali-dtg071116.php

Quote from it:

In the interview, "The Role of Microbiome Diversity in Brain Health and Inflammation," David Perlmutter, MD, FACN, ABIHM, University of Miami School of Medicine, FL, discusses the role of the microbiome in conditions such as Alzheimer's disease, amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), and autism. He points to ALS as an example of how research on the underlying cause of certain diseases may be shifting from a focus on the brain to the gut. Future treatments for diseases such as ALS could involve fecal transplants to restore the integrity and correct the balance of bacterial composition of the intestines.

Regarding the link between the microbiome and Alzheimer's disease, autoimmune and inflammatory disorders, and the overuse of antibiotics to treat infection, Dr. Perlmutter states, "I hypothesize that our diets today are affecting our microbiomes and therefore challenging our immune systems. Our diets are setting us up for these opportunistic issues [infections]."

 

[kangaSue]

Hmmm, the majority of these conditions that are being found to have altered gut microbiome and GI dysfunction are autoimmune conditions.

 

[frog_in_the_fog]

Here is an excerpt from the Ask Dr. Dawn radio show. It is quite informative.
http://askdrdawn.com/audio/2016-07-02_microbiome_diagnosis.mp3

 

[aimossy]

I came across this and thought quite interesting...

'Crohn's disease treatments don't fully restore healthy gut microbes in children'

https://www.sciencedaily.com/releases/2015/10/151014132353.htm

summary:

A gut microbe analysis of children receiving treatment for Crohn's disease reveals that diet-based and anti-inflammatory therapies alter different components of the microbial community without fully restoring the normal balance of gut bacteria and fungi. The surprising findings could lead to new strategies for the diagnosis and treatment of inflammatory bowel disease.



just a bit of a quote:

"These data are a step to trying to identify ways to manipulate the gut microbiome to provide favorable outcomes to patients with Crohn's disease," says first author James Lewis of the University of Pennsylvania. "We observed that upon initiation of a therapeutic formula-based diet, the gut microbiota look even less similar to that of a healthy child, suggesting that one does not have to necessarily give back the healthy microbiota to have a therapeutic effect. It is possible that the effect of the formula diet is through mechanisms other than altering the microbial community."

Although more research is needed, the findings could pave the way for new ways to diagnose and treat inflammatory bowel disease. For example, patients who responded to treatment showed different changes in the composition of gut microbes compared to non-responders, suggesting that assessments of the gut microbe community could be used to predict responses to therapy.

In future studies, the researchers will analyze the metabolites produced by gut microbes to further examine the mechanisms underlying Crohn's disease. Some of these metabolites may be altered by the dietary therapy and could potentially be used as novel therapies.

The researchers will also continue to study how formula-based diets work. "We hope to use this information to develop diets that are less restrictive but equally effective, or medications that mimic the mechanisms of the formula-based diets," Lewis says. "We also hope to study other diets that are popular among patients with Crohn's disease in the coming years."

 

[ruben]

http://forums.phoenixrising.me/index.php?threads/fecal-transplant-study-58-70-response-rate.20430/

Did you do a 10 day series or just a one off? A one off can work well for C. diff but it sounds like a series at regular interval can work for other conditions.
I see some with Crohn's or Ulcerative Colitis get remission only after several months of weekly infusions. Some of those doing FMT d.i.y. found they got a result from changing to a different donor too so there can be some compatibility issues by the looks of things.

Yes I did the 10 day thing. I'll be speaking to the Taymount clinic next week on what my best move is next

 

[jepps]

Study about chronic inflammation in the gut, and susceptibility for pathogenic infections in the gut:

http://medicalxpress.com/news/2016-07-gut-nervous-cells-eyes-ears.html

"Our study reveals that the nervous system acts as the 'eyes and ears' of the immune system", says Veiga-Fernandes, who is currently moving his lab to the Champalimaud Centre for the Unknown (also in Lisbon). "Nervous cells receive alerts from the gut and then give specific instructions to the immune system to repair the damage."

It all started when he and his colleagues identified the presence of a receptor protein, called Ret, on the surface of a type of immune cells called innate lymphocytes (lymphocytes are white blood cells), which are among the most important regulators of inflammation and infection at mucous membranes. Ret acts, in fact, as a switch which can be turned on or off by the signals it receives.

the team started by locating the innate lymphocytes that expressed the Ret receptor in the gut of laboratory mice, which had been genetically modified so that their cells glowed green when carrying Ret on their surface. And they discovered that, immediately beneath the intestinal mucosa, there are, in fact, thousands of cellular clusters, each containing 100 to 200 innate lymphocytes expressing Ret.

The next step consisted in determining what could be the function of the protein in those lymphocytes. "We then showed that the Ret protein controls the production, by the innate lymphocytes in the gut, of interleukin-22 (IL-22), a molecule that is extraordinarily important for the repair of the gut epithelium [or wall]", says Veiga-Fernandes.

In fact, they confirmed that transgenic mice which did not express Ret on their innate lymphocytes had an altered intestinal epithelium that was less able to regenerate and to express the genes that promote repair.

These results led to another idea: proving that those animals, given their altered epithelium, were prone to various inflammatory pathologies and infections of the gut. "We tested this idea in mice infected with gut bacteria or in which we had induced a chronic bowel inflammation", says Veiga-Fernandes. "And what we saw was that the animals that did not express Ret were highly susceptible to both things and died very quickly."

On the other hand, transgenic mice in which the expression of Ret had been boosted to higher-than-normal levels proved to be "totally resistant" to these pathologies.

"We then discovered that all the cluster of innate lymphocytes were very close to glial cells, a type of nervous system cell", says Veiga-Fernandes. "In fact, these are the cellsthat activate the Ret protein on the innate lymphocytes." Glial cells are not neurons, but they are a crucial component of the nervous system.

 

[FMMM1]

I think the major problem is funding. The further along you go on a validation path, the more expensive it becomes.

I'm replying to Ales's post re potential diagnostic tests.
Dr. Robert Naviaux, part of Ron Davis's group, is due to publish a Mass Spectrometry [LC-MS] biomarker test "in the fall". This is based on a blood test for a biomarker relating (I assume) to the citric acid cycle.

I've checked here in Northern Ireland and the Government Laboratories are paid about £200 pounds [US $200 ish] for a statutory Mass Spectrometry analysis e.g. of antibiotics in meat. I asked the United Kingdom all party parliamentary part group (APPG) on ME to request the use of the English Government Laboratories to progress the use of Mass Spectrometry for ME diagnosis [FERA (Food and Environment Research Agency) in York]. An extract from the response is set out below, in essence I was told that this is not something the APPG (and therefore presumably the Government) would do.

Many Governments e.g. Australian, USA and all EU Member States have the resources i.e. Mass Spectrometry to validate this biomarker and, if the biomarker is usable, to test samples from patients. They currently use these resources to carry out Mass Spectrometry analysis e.g. of antibiotics in meat. However, the question is whether they will use these resources to validate a diagnostic test for ME/CFS and subsequently to test patients.

I once heard it said that the primary objective of a politician was to be reelected. You may wish to ask them whether they are prepared to use Government Laboratories/resources to validate a diagnostic test for ME/CFS and to test samples from patients.

Extract from response from the United Kingdom all party parliamentary part group (APPG) on ME (emphasis added):
"The role of the APPG does not include authority or responsibility for requesting peer review of research. As you may be aware, any diagnostic test that is identified will need to be validated by further research and therefore will require interested researchers and funding to be in place to progress this. Once validation has been undertaken there is then a process that will need to be followed before the test reaches the consulting room."

 

[Forbin]

I'm convinced my CFS arose because I was on tetracycline for more than a year as an anti-acne regiment when I was a teenager in the 70's. The antibiotics killed off much of my beneficial bacteria and a massive fungal overgrowth messed up my small intestinal lining. I was rarely ill before, but often got viral symptons after. Didn't know anything about probiotics then.

Yes!!! @EastTenn - Same with me! A year of Tetracycline was the start of my IBS as a teenager. Its always been in the back of my mind that maybe that was the predisposing factor in the development of the disease.

With the caveat that it sometimes doesn't seem too hard to find a paper making an association between any two search terms... here is a 2010 paper that reports a possible association between IBD and tetracycline use.

Am J Gastroenterol. 2010 Dec;105(12):2610-6. doi: 10.1038/ajg.2010.303. Epub 2010 Aug 10.
Potential association between the oral tetracycline class of antimicrobials used to treat acne and inflammatory bowel disease.

CONCLUSIONS:
Tetracycline class antibiotics, and particularly doxycycline use may be associated with the development of IBD, particularly CD [Chron's disease].

http://www.ncbi.nlm.nih.gov/pubmed/20700115

 

[luminescencs]

Have any of you had noticeable success with taking butyrate to help correct autoimmunity, fix "leaky gut," and prevent bad bacteria in the gut? Have you tried Hi-Maize (resistant starch) for this as well? Or did this increase your brain fog due to increased carbs..

It seems people have different effects, and I'm wondering if this would be helpful for most people with ME, or if it's better to wait until the end of treatment...

 

[Sushi]

Have any of you had noticeable success with taking butyrate to help correct autoimmunity, fix "leaky gut,"

If you do a search for butyrate, you will find quite a lot of posts.

Have you tried Hi-Maize (resistant starch) for this as well? Or did this increase your brain fog due to increased carbs..

There is also a very long thread on resistant starches that you might find interesting.

 

[luminescencs]

If you do a search for butyrate, you will find quite a lot of posts.
There is also a very long thread on resistant starches that you might find interesting.

Thanks digging them up now!

 

[sarah darwins]

There is also a very long thread on resistant starches that you might find interesting.

When you say "a very long thread", Sushi ... that's kind of an understatement! Currently at 179 pages of posts. I wonder if it's some sort of internet record?

 

[SWAlexander]

What has changed since 2015 when this discovery was made?

Changes in Gut and Plasma Microbiome following Exercise Challenge in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0145453
Around the world, med professionals still don't test stool.