Does the microbiome hold the key to chronic fatigue syndrome?(theguardian.com)
theguardian.com
Does the microbiome hold the key to chronic fatigue syndrome?
https://www.theguardian.com/science/2023/jul/09/microbiome-chronic-fatigue-me-long-covid-research
47 comments
Folks in Maureen's group at Cornell have been looking at this for at least 10 years. There are changes but the research isn't replicable nor can people predict the changes.
This is not at all surprising and has been noticed by actual chronic fatigue sufferers for years - maybe we should have listened to them?
https://cfsremission.com/2015/10/19/miyarisan-clostridium-bu...
This is an open sourced microbiome site that's run by the author of the above blog, someone who has CFS and a background in science: https://microbiomeprescription.com/
You can easily spend around 200 dollars to get a full sequencing of your stool and suggested food and probiotics to take.
The problem is most probiotics you can get over the counter are pretty much a scam. Lactobacilli don't survive fecal transit. Even suggestions like changing diet don't really help if your microbiome is that messed up, and you will see more cutsey suggestions like "Eat more resistant starch to increase butyrate producing bacteria!".
The two probiotics that consistently actually work for CFS patients are Mutaflor (a probiotic E. Coli Strain) and C. Butyricum. You can only now just get this in the US from Pendulum, but it's been available in Japan for years as the Miyarisan probiotic, which you can easily order from eBay.
Butyrate/buytric acid is a game changer and is being studied in a variety of diseases. It's a Histone deacetylase inhibitor, but without the side effects of the drugs on the market. A relative of mine with Parkinsons supplements buytric acid and this has controlled her tremor. PD and autism are also associated with disrupted gut biome and benefit from Butyrate or Butyrate producing probiotics. You can read more about it here:
https://thehomeschoolingdoctor.com/butyrate-series/
But, I guess big pharma, and CFS patients be faking/crazy, and probiotics are "hippie" stuff (along with the fact that you can't actually buy the ones that make a dent in these condition easily in the US). Really wish patients and their lived experiences were taken more seriously.
https://cfsremission.com/2015/10/19/miyarisan-clostridium-bu...
This is an open sourced microbiome site that's run by the author of the above blog, someone who has CFS and a background in science: https://microbiomeprescription.com/
You can easily spend around 200 dollars to get a full sequencing of your stool and suggested food and probiotics to take.
The problem is most probiotics you can get over the counter are pretty much a scam. Lactobacilli don't survive fecal transit. Even suggestions like changing diet don't really help if your microbiome is that messed up, and you will see more cutsey suggestions like "Eat more resistant starch to increase butyrate producing bacteria!".
The two probiotics that consistently actually work for CFS patients are Mutaflor (a probiotic E. Coli Strain) and C. Butyricum. You can only now just get this in the US from Pendulum, but it's been available in Japan for years as the Miyarisan probiotic, which you can easily order from eBay.
Butyrate/buytric acid is a game changer and is being studied in a variety of diseases. It's a Histone deacetylase inhibitor, but without the side effects of the drugs on the market. A relative of mine with Parkinsons supplements buytric acid and this has controlled her tremor. PD and autism are also associated with disrupted gut biome and benefit from Butyrate or Butyrate producing probiotics. You can read more about it here:
https://thehomeschoolingdoctor.com/butyrate-series/
But, I guess big pharma, and CFS patients be faking/crazy, and probiotics are "hippie" stuff (along with the fact that you can't actually buy the ones that make a dent in these condition easily in the US). Really wish patients and their lived experiences were taken more seriously.
I use butyric acid. Anecdotally it is one of the few things I've tried that actually helps with my stomach issues.
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Is there a sex-specific difference in gut immunity that would account for the much higher prevalence of CFS in women?
As far as I know, all autoimmune diseases are more prevalent in women, so I’m skeptical that a gender-specific difference in gut immunity is at play, but it’s possible.
Betteridge's law of headlines: "Any headline that ends in a question mark can be answered by the word no."
Betteridge's corollary: "any headline that ends in a question mark will have a comment pointing out Betteridge's law when linked to in a forum."
Goodhart's law of headlines:
Any quick measure for recognising and avoiding clickbait, when widely shared and applied, stops being a good measure.
Any quick measure for recognising and avoiding clickbait, when widely shared and applied, stops being a good measure.
I hope they figure something out
::slams 5th cup of coffee::
Do you have CFS? Personally, I find that coffee doesn't do very much to help.
I don’t know.
I’ve been chronically tired for years now. It’s spanned from when I was military running 5 miles a day annd eating great, to periods of eating bad and barely exercising.
Life style doesn’t seem to effect it.
Life style doesn’t seem to effect it.
Any chance you have ADHD? I learned (far later in life than I would have liked) that I have ADHD and that it is one of the biggest reasons I'm almost always tired or even exhausted. Brain's just thinking too hard/inefficiently. (I have other contributing factors, but this one is significant and fairly obvious). Still can't get treatment, but the awareness has helped me work around it somewhat, by removing stressors and taking time to relax and/or hyperfocus.
Seconding for for ADHD and narcolepsy. I had a sleep study done a few years back that came up borderline positive. Doctor had me try a few meds out but the one that really stuck was Vyvanse (basically a slow release pro-drug of Adderall). Suddenly I’m not having sleep attacks every time I sit down, or even feeling like my head is made of bricks.
I grew up in a family that didn’t believe in ADHD so I would cope with excessive amounts of caffeine. It’s definitely worth looking into if you have the slightest suspicion.
Also don’t get too caught up in passing the MSLT. Personally, I think it’s barely medical science, but it’s a part of getting a diagnosis and some insights into how your brain is (or isn’t) sleeping.
I grew up in a family that didn’t believe in ADHD so I would cope with excessive amounts of caffeine. It’s definitely worth looking into if you have the slightest suspicion.
Also don’t get too caught up in passing the MSLT. Personally, I think it’s barely medical science, but it’s a part of getting a diagnosis and some insights into how your brain is (or isn’t) sleeping.
Same for me. Chronically tired all the time since I can remember. Tried everything. Exercise, diet, probiotics, meditation, sleep training. Got diagnosed for depression ten years ago. No medication helped. Finally got prescribed “off label” treatment for narcolepsy and ADHD called Modafinil.
Completely changed my life!
Turns out there is some connection to narcolepsy and ADHD (Huberman talks about this on his podcast), and it makes sense.
Anecdotally, other people I know who’ve been diagnosed with CFS or ME tend to exhibit similar ADHD-like patterns. Maybe there’s something to that. Certainly worth exploring further.
Completely changed my life!
Turns out there is some connection to narcolepsy and ADHD (Huberman talks about this on his podcast), and it makes sense.
Anecdotally, other people I know who’ve been diagnosed with CFS or ME tend to exhibit similar ADHD-like patterns. Maybe there’s something to that. Certainly worth exploring further.
Wait that's not just me? Holy crap.
Have both ADHD and Sleep Apnea, both are treated (CPAP and Addral)
I've been reading about health and all of this stuff for a bit now. Some things I learned...
1. Sleep is massively important. Not getting enough, sleep Apnea, and other things that mess with sleep will lead to feeling tired.
2. Diet matters. What most people consider healthy is often not all that healthy. You can read about the gut/brain connection. To keep the gut in healthy shape you needs plenty of fiber and micro nutrients found in things like vegetables and whole grains. Doctors aren't trained much in this stuff but nutritionists are.
3. I personally found that drinking too much coffee lead to it. I almost needed the coffee to feel awake. When I broke myself of that (I have limited amounts of coffee now) I had more energy. I cut off coffee cold turkey. Was not fun.
4. ADHD can lead to feeling tired.
1. Sleep is massively important. Not getting enough, sleep Apnea, and other things that mess with sleep will lead to feeling tired.
2. Diet matters. What most people consider healthy is often not all that healthy. You can read about the gut/brain connection. To keep the gut in healthy shape you needs plenty of fiber and micro nutrients found in things like vegetables and whole grains. Doctors aren't trained much in this stuff but nutritionists are.
3. I personally found that drinking too much coffee lead to it. I almost needed the coffee to feel awake. When I broke myself of that (I have limited amounts of coffee now) I had more energy. I cut off coffee cold turkey. Was not fun.
4. ADHD can lead to feeling tired.
In the last couple years I've had to overhaul my diet due to sudden onset of all kinds of food allergies since COVID. I used to be chronically tired especially in the afternoons. I now eat very little sugar and no corn syrup/HFCS at all and I've made two interesting observations: My cravings for sweets are virtually zero and my energy levels are stable all day.
There are exceptions but for the most part I'm almost never tired during the day anymore unless I worked out a lot. My energy isn't exactly bouncing me off any walls but it's a noticable improvement.
There are exceptions but for the most part I'm almost never tired during the day anymore unless I worked out a lot. My energy isn't exactly bouncing me off any walls but it's a noticable improvement.
Have you been tested for sleep apnea? This can affect even people who aren’t overweight.
Yeah I was diagnosed and have used a cpap consistently for years
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Doesn't it actually make it worse. The chronic stimulation of Catecholamines, especially dopamine is going to lead to chronic fatigue.
I always find these articles about "the microbiome being the key to a healthcare revolution" to be kind of annoying and just repetitive info.
If a person's diet consists of Diet Coke, high carb/fat/sugar processed foods, 14 servings of bacon or beef a week and alcohol every other day with no exercise _they are going to feel like shit_. Leafy greens, fruits, less meat and less breads with some exercise would do anyone wonders - especially for their microbiome.
These articles and ideas on the microbiome have been coming out for at least 10 years and the realistic takeaway from the research has always been _make healthier decisions and you'll be healthier_. It's just never seemed _that_ revolutionary, aside from the microbiome and mental health connections, which are interesting but still the same message.
If a person's diet consists of Diet Coke, high carb/fat/sugar processed foods, 14 servings of bacon or beef a week and alcohol every other day with no exercise _they are going to feel like shit_. Leafy greens, fruits, less meat and less breads with some exercise would do anyone wonders - especially for their microbiome.
These articles and ideas on the microbiome have been coming out for at least 10 years and the realistic takeaway from the research has always been _make healthier decisions and you'll be healthier_. It's just never seemed _that_ revolutionary, aside from the microbiome and mental health connections, which are interesting but still the same message.
There is a study that would really annoy you then, the subjects were pairs of identical twin children throughout Africa. They would find twins where one was perfectly healthy and the other was malnourished. The reasoning is both nature (genetics) and nurture (diet) were nearly identical. The difference is nearly all cases was the makeup of the microbiome leading to one child being healthy & the other malnourished with all other things being equal. Per your comment it would seem no amount of dietary changes would makeup the difference, plus it probably also highlights a possible bias that a bunch of malnourished kids around the world can simply make “healthy” dietary changes.
10 years really isn’t a significant period of time to study something as complex as the microbiome. Don’t be surprised if it continues to be studied for decades, just as we have been studying genetics for decades and despite all the incredible advancements and understanding we still have more questions than we have answers.
10 years really isn’t a significant period of time to study something as complex as the microbiome. Don’t be surprised if it continues to be studied for decades, just as we have been studying genetics for decades and despite all the incredible advancements and understanding we still have more questions than we have answers.
That's interesting--it's certainly plausible, even probable, sense that good diet is necessary but not sufficient to ensure that the microbiome is in a personally-optimal state. Please give a citation if you can!
I don’t think this is the study I was referencing but it’s on point (317 pairs of twins 1-3 yrs old, 1 healthy & 1 malnourished)
https://www.science.org/doi/10.1126/science.1229000
https://www.science.org/doi/10.1126/science.1229000
Did the study suggest what had damaged one of the twins biome? I can only assume it was antibiotics.
Reading a second study a bacteria was present in the malnourished twin but not in the healthy twin. I’m not certain but it seems the bacteria was just an unfortunate roll of the dice.
Starvation can severely alter the microbiome in a negative way.
Haven't read much into the how. Acids and such possibly.
Haven't read much into the how. Acids and such possibly.
I haven't been able to track this study down, do you have a link or a name?
There must be another, but this one is dominating my search result
https://www.science.org/doi/10.1126/science.1229000
https://www.science.org/doi/10.1126/science.1229000
> _make healthier decisions and you'll be healthier_
> aside from the microbiome and mental health connections
Conjecture: If our microbiome has the ability to impact our mental health, then it most certainly is possible for an unhealthy microbiome to rob individuals of the willpower necessary to maintain the discipline for their healthier decisions to bear fruit; a kind of self-preservation, perhaps.
The behavioral changes of toxoplasmosis-afflicted individuals suggests to me that these little buggers can effect complex change.
> aside from the microbiome and mental health connections
Conjecture: If our microbiome has the ability to impact our mental health, then it most certainly is possible for an unhealthy microbiome to rob individuals of the willpower necessary to maintain the discipline for their healthier decisions to bear fruit; a kind of self-preservation, perhaps.
The behavioral changes of toxoplasmosis-afflicted individuals suggests to me that these little buggers can effect complex change.
I have run into a previous report of a temporary reversal of autism symptoms from an antibiotic.
I agree that it's being touted as a panacea and The One Cause. But I think that you can do all those things and still have life suck. For instance, Crohn's and celiac both look similar to the untrained eye. You have digestive trouble. And some generic "just eat healthy" advice won't have worked properly. Literally cutting out gluten would instantly work wonders for celiac, not "less bread, less meat". Literally just "no bread from sources with gluten". So, we just go through and find causes and more precisely intervene.
And the worst thing is that someone would have gotten a bit better with celiac's if they eat less bread, but the problem will have been unsolved. Way better to identify precisely and they can do all these other things and just avoid bread with gluten and can enjoy the occasional matcha mochi waffle.
And the worst thing is that someone would have gotten a bit better with celiac's if they eat less bread, but the problem will have been unsolved. Way better to identify precisely and they can do all these other things and just avoid bread with gluten and can enjoy the occasional matcha mochi waffle.
What interests me is the possibility that over time you can cause certain strains of beneficial bacteria to go extinct in your gut, so you can't repopulate it by correcting your diet. And if that bacteria is initially populated by the mother, if she already has some of those strains go extinct when she has children, they could be born without those strains at all. But that's all a wild guess on my part.
You are being a bit reductive. For understandable reasons: the articles actually are repetitive and not terribly information-dense. This is because most of what sciences has uncovered about the microbiome so far does not translate well to journalism even when it's directed at a semi-technical audience.
The microbiome is insanely complex. In some ways I believe the GI tract is a more complex system than the brain (in terms of more variables all cross-interacting which has significant and sometimes severe influence on health outcomes). We are a long way away from fully understanding any single aspect of it, let alone how multiple aspects of the GI or microbiome work in concert.
The microbiome is insanely important in human health. It is the absolutely critical foundation of our entire immune system, for one thing. Yes, a good diet is foundational to health. But if you encounter enough microbiome research, it becomes quite clear that a proper diet is not a magical cure for a whole lot of severe diseases and disorders in which the microbiome is moderately to strongly implicated. And various extreme and fad diets don't really bear out in the research to cure many let alone most diseases in large populations (aside from the few obvious ones, type II diabetes, obesity, lower risk of heart disease, etc). Eating well is better than eating like crap just like not slamming heroin is better than becoming a junkie.. but that is not where insights from microbiome research begin nor end.
If you get impatient with the slow pace of actionable results, do keep in mind that researchers are only looking closely at only a fraction of the 1,000 or so species that make up the 100 trillion bacterial cells in it, and almost none of the fungi and yeast nor the viruses that also compose it (the latter of which are now believed to vastly outnumber the 100 trillion bacteria!). All of these critters produce side effects - whether good or bad (eg bacterial and fungal metabolites, many of which are critical to host immune signaling and other essential aspects of human health).
The microbiome is insanely complex. In some ways I believe the GI tract is a more complex system than the brain (in terms of more variables all cross-interacting which has significant and sometimes severe influence on health outcomes). We are a long way away from fully understanding any single aspect of it, let alone how multiple aspects of the GI or microbiome work in concert.
The microbiome is insanely important in human health. It is the absolutely critical foundation of our entire immune system, for one thing. Yes, a good diet is foundational to health. But if you encounter enough microbiome research, it becomes quite clear that a proper diet is not a magical cure for a whole lot of severe diseases and disorders in which the microbiome is moderately to strongly implicated. And various extreme and fad diets don't really bear out in the research to cure many let alone most diseases in large populations (aside from the few obvious ones, type II diabetes, obesity, lower risk of heart disease, etc). Eating well is better than eating like crap just like not slamming heroin is better than becoming a junkie.. but that is not where insights from microbiome research begin nor end.
If you get impatient with the slow pace of actionable results, do keep in mind that researchers are only looking closely at only a fraction of the 1,000 or so species that make up the 100 trillion bacterial cells in it, and almost none of the fungi and yeast nor the viruses that also compose it (the latter of which are now believed to vastly outnumber the 100 trillion bacteria!). All of these critters produce side effects - whether good or bad (eg bacterial and fungal metabolites, many of which are critical to host immune signaling and other essential aspects of human health).
Until I stop getting surprised looks when I explain that probiotics and proper dietary fiber effectively stop bad bacteria from eating your gut lining, causing bowel (and often systemic) inflammation, I hope one of these posts makes it to front-page weekly.
Hopefully daily.
Hopefully daily.
I mostly agree, but I think we need to start discussing/researching the effects of nuking our gut bacteria with antibiotics and the herbicides like Roundup which are present in our food.
The latter is obviously pretty tough because you risk upsetting the ag industrial complex who would like to continue spraying everything with Roundup and claiming it has no harms whatsoever.
The latter is obviously pretty tough because you risk upsetting the ag industrial complex who would like to continue spraying everything with Roundup and claiming it has no harms whatsoever.
The correlation you presented is obvious, but there ia also a question of what causes what.
Speaking for the devil, there might be a case when biome makes people irresistive to Coke, sugar and bacon, through, say, depressive/impulsive shots.
Fortunately, unlike astronomy, we can test it, e.g. by injecting a different biome without touching anything else, and see what happens on its own.
Speaking for the devil, there might be a case when biome makes people irresistive to Coke, sugar and bacon, through, say, depressive/impulsive shots.
Fortunately, unlike astronomy, we can test it, e.g. by injecting a different biome without touching anything else, and see what happens on its own.
They find it easier to directly monetize a pill for a chronic condition, instead of preventing the chronic condition.
noyeastguy(4)
"Studies find that microbiome changes may be a signature for ME/CFS"
Wednesday, February 8, 2023
NIH-funded studies link altered gut microbes to debilitating chronic disease.
https://www.nih.gov/news-events/news-releases/studies-find-m...
(1); Guo, et al. Deficient butyrate-producing capacity in the gut microbiome is associated with bacterial network disturbances and fatigue symptoms in ME/CFS. Cell Host & Microbe, February 8, 2023. DOI: 10.1016/j.chom.2023.01.004. https://www.cell.com/cell-host-microbe/fulltext/S1931-3128(2...
(2); Xiong, et al. Multi-‘omics of host-microbiome interactions in short- and long-term Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Cell Host & Microbe, February 8, 2023. DOI: 10.1016/j.chom.2023.01.001. https://www.cell.com/cell-host-microbe/fulltext/S1931-3128(2...