Discussion in 'Health News and Research unrelated to ME/CFS' started by Sly Saint, Aug 3, 2019.
I am convinced that the gut is relevant to my illness. I think it influences the illness trajectory and severity and that there is some problem with increased permeability.
This could also explain why patients often say they feel better with gluten avoidance despite not having celiac disease. Gliadin in wheat increases intestinal permeability even in people without celiac disease. I have seen markedly increased zonulin during a flare of GI symptoms, which was followed by a long lasting worsening of health.
This. Zonulin has also been implicated in loss of blood brain barrier integrity.
I am convinced that in my case that the gut has absolutely nothing to do with my ME other than a downstream symptom.
This is based on me not having any specific sensitivity. I’ve also managed to make relatively small changes to diet to get my IBS type symptoms under control (I had daily multiple bouts of diarrhoea with constipation for around 2 years with bloating/stomach cramps). In my case this is not caused by gluten or dairy sensitivity....I can eat bread, cream, cheese, and yoghurt in moderation with no symptoms.
My ibs returns if I eat too many calories in one sitting, eat too much calorie dense foods (cheese in particular) or when I’m crashed.
This suggests that from my n=1 study that the gut isn’t the thing causing a problem, rather it is responding to a problem elsewhere. The diarrhoea probably caused an imbalanced gut biome that exacerbated the problem but this reset itself after the diet change with no need for any other intervention.
This could be regulatory of course. The fact that the ibs returns when I’m in PEM is interesting I think.
Like @strategist, I'm convinced my microbiome plays an important role in my ME. I had IBS for decades before ME. The IBS grew much, much more painful with gradual/mild onset. When my ME became much worse the IBS pain was extremely painful. A GI specialist found nothing wrong, but did inquire as to my home life.
Probiotics help not only my gut symptoms, but with my brain fog. I do need to be consistent in taking them though, as the improvement wears off.
If it's cause or effect I still want to do something about it. Exercise has been found to increase intestinal permeability, more so in pwME. Increased bacterial translocation (and food antigens) then causes inflammation and can give that "flu like" feeling. Also with impaired gut barrier integrity, there is the possibility of impaired blood-brain-barrier integrity, which could lead to cognitive/other brain issues. By increasing barrier integrity (for example by decreasing intake of food that impairs the barrier, increase foods that improves it, spending time outdoors, not exercising beyond one's limit) one could potentially rid the body of at least one source of strain to the system. I'd rather not waste my precious energy having my immune system fight something it shouldn't have to deal with/the body's clean-up system having to clear something that doesn't have to be there if I can prevent it from happening in the first place.
Zeolite was found to decrease permeability in a study. I tried it once and it seemed to help a bit.
For me gut symptoms are a downstream symptom as well. The worse the ME, the severer the PEM. I had a lot of awful stomach nausea in my severe/moderate-severe years of ME also but this was also a downstream in my experience.
But having experienced a permanent microbiome change (not the gut area) which occurred at the time of infection and the moment of use of an antibiotic pessary, I do feel that there could be a group of ME sufferers who could have experienced permanent gut microbiome changes which could have made them vulnerable to getting ME, like me. We do need to investigate this side of things if it is possible. I know the microbiome is complicated.
So, for some PwME, gut symptoms is more a downstream ME symptom but for another group they could be experiencing a double blow, changes in gut microbiome causing symptoms of their own, plus the added downstream gut symptoms.
I agree I am just speaking about my n=1 experience. I’m sure others have a different experience to you and me.
I also agree that we appear to have different groups in the ME community with different levels of sensitivity and symptom profiles and we should study the microbiome generally. This can give clues as to what may be affecting it from elsewhere, or help come with treatments to alleviate symptoms of ibs or food sensitivity.
I’m not sure I’m convinced there is a logical argument to say that it’s worth researching the gut biome as a direct cause of ME though or that the gut microbiome can be permanently changed (I understand other areas may be more difficult to change but this is not the case with the gut I think).
This is why I think that.
I speak as an ex-microbiologist. The thought that we have good and bad bacteria or that our gut can be permanently changed seems a fundamental misconception. This appears to arise from medical researchers who don’t appear to understand food, digestion or microbiology.
Microbes will grow if you give them the basic things they need ...food water etc. They compete with each other for these things and will stop growing if you make changes in their environment that they don’t like. You isolate some bacteria from others for instance using specific nutrient media. The gut is designed to be adaptable for our omnivorous diet, so it makes sense to assume that the gut biome will adapt to whatever we need to eat. The food we eat contributes to the biome, we move on eat something different with a different microbiological load etc etc. This is one of the things that has enabled us to spread across the globe adapting to our environment, with our gut biome adapting as we move to different pastures with different foods. Nowadays we eat a more diverse food than practically any animal on the planet.
I suspect this latest fad to attribute everything to the microbiome is just research funding gravy, based on how little we know. I’m surprised the BPS lot haven’t jumped on this lucrative gravy train. How the mind affects our gut via the vagus nerve that leads to permeability and leaky gut via the brain-gut axis or some such nonsense. Sorry I had to use a collection of nonsense words there. Seemed appropriate when talking about BPS.
I doubt very much that any gut biome study will find it is a root cause of ME, but what we may find is that diet or other exacerbating factors (like metabolites, histamine, hormones, low stomach acid) can can lead to changes in microbiome that in turn lead to poor digestion and transient food sensitivity. These in turn could also cause a cascade effect that lead to people getting or feeling sicker than they need to. To find treatment for food sensitivity would be a boon so I think it’s worth studying on that basis alone. This would help many, not just ME sufferers.
From my food background I also think we will find that probiotics and gluten-free foods have been one of the biggest con’s of the last 15 years. This is based on a lack of clear evidence to suggest that the numbers purchasing these products (which has changed dramatically like a fashion trend) have anything wrong with them at all.
Probiotics have been banned from making health claims on pack by the EU for over 5 years due to lack of scientific evidence. You would have thought that if a commercial company selling a health product had their health claims removed that they would have proven it by now? This makes me highly sceptical that probiotics do anything more for our gut biome than eating food which is a much cheaper solution.
I won’t elaborate too much on gluten-free since I know it upsets some people here ...but for the general population most of the evidence that this is beneficial is anecdotal self reported and very prone to placebo/misattribution. Gluten-free foods generally are at least 40% more expensive and in the majority of cases people could continue enjoying cheaper and just as nutritious sources of carbohydrate from wheat based product. That’s not saying that some people aren’t gluten sensitive or intolerant, but that the vast majority who think they are, probably aren’t. These people are paying too much for their food based on a misplaced belief originating from misinformation on the internet spread by unscrupulous people normally trying to sell something (book etc). The food retailers have jumped on this as a “trend” and are making a shed load of money at the expense of their shoppers ignorance. This to me is just plain wrong. But we live in a commercial world I suppose where the consumer (however poorly advised) is king.
That some people promoting probiotics and gluten free foods don't know what they are talking about (a lot of the gluten free food you can buy has poor nutrient density, so even if that person had a problem with gluten they are just exchanging that for poor nutrient status which is of little/no help. And don't get me started on supplements, be it probiotics or others ) doesn't mean everything about the theories are wrong. I agree, food is better than supplements. We are able to eat a whole lot of different foods, so why do so many people eat nutrient-poor diets? That the microbiome adapts doesn't mean the adaption does us any favors. I don't mean there is one way to eat for everyone, people can thrive on many different diets and there are probably as many types of "healthy" gut microbiomes as people, but I do believe some dietary patterns are detrimental to most. And then in part because it affects the microbiome.
Agreed. Although I don't think that altering the microbiome is the only way diet can cause cascading effects that makes people feel worse, but you didn't say that it was Claiming that the vast majority of people going gluten free are misinformed is a bold claim, in my opinion. But yes, we don't have to discuss that here. Some people tolerate grains, others don't. Some tolerates them when prepared in certain ways, other needs to stay away completely. To know the numbers research would have to be done.
I'm not a microbiologist, but I have spent many hours in a microbiology lab during my studies. Now studying nutrition and biomedicine/systems biology. I also believe in the microbiome-gut-brain-axis (and other (microbiome-) gut-axis'es).
I think that the British Gut study concluded that the more diversity in one's diet, the more diverse one's microbiome is. Eating omnivorous diet with 50+ varieties of plant foods led to the richest diversity.
I’m mainly sceptical on this because having spent time in research (in another field) and having had to pour over lots of nutrition papers over the last 10 years for work, I see a lot of outlandish claims in this area. I must look at about 2 or 3 a week that mention gut biome as if it’s some sort of perfect seasoning for their discussion, whether they are talking about vitamins, fibre, cholesterol, or sometimes even more bizarre connections.
My first rule when looking at papers of this sort is to ask myself ..does this sound plausible as an hypothesis? I then look at the quantity of studies, then look at the quality of studies. So far this theory of two way feedback with the brain is not inspiring much confidence on any of the three criteria. The literature surveys are often weak and make rather outlandish connections and often I spot clear knowledge gaps ...some of which is very basic.
I would like to see far more quality studies investigating what normal/healthy looks like at a much more detailed/deeper level than has been carried out so far. I would also like to see how much this varies within healthy. This however is not “sexy” quick funding research that anyone wants to pay for.
We can investigate all the brain shenanigans when we have a clear idea as to how it works on a basic level....and connect it up with what we already know about feedback during digestion etc. Doing this before is rather like putting the cart before the horse.
The fact that people are veering off on these tangents before doing the basics is making me smell a funding marketing rat. Perhaps I’m old fashioned?
It’s much easier to make up some hypothesis in a popular but little studied area ..even better if your test subjects are patients with a condition that is also poorly understood without a biomarker...you could literally make up anything you like and none could prove you wrong. This is publishing gold for scientists who care more about the list of papers they have with their name on it rather than moving science forward.
I am willing to be proven wrong, although I would need to see something more compelling in the literature than what we have so far.
It is very interesting though
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