7 ms·

Does the microbiome hold the key to chronic fatigue syndrome?

80 points by vincvinc 3y ago

cupcake-unicorn 3y ago
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-butyricum-revisited/ 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/ 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/ 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.
- zingababba 3y ago
  I use butyric acid. Anecdotally it is one of the few things I've tried that actually helps with my stomach issues.
imwillofficial 3y ago
I hope they figure something out ::slams 5th cup of coffee::
- GordonS 3y ago
  Do you have CFS? Personally, I find that coffee doesn't do very much to help.
  - imwillofficial 3y ago
    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.
    - digging 3y ago
      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.
      - TeffenEllis 3y ago
        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.
ilya_m 3y ago
Betteridge's law of headlines: "Any headline that ends in a question mark can be answered by the word no."
- accoil 3y ago
  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."
  - ben_w 3y ago
    Goodhart's law of headlines: Any quick measure for recognising and avoiding clickbait, when widely shared and applied, stops being a good measure.
jsbisviewtiful 3y ago
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.
- throwawaycities 3y ago
  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.
  - elmomle 3y ago
    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!
    - 3y ago
pella 3y ago
imho: this is a slightly better link: "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-microbiome-changes-may-be-signature-mecfs 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(23)00029-X 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(23)00021-5 https://www.cell.com/cell-host-microbe/fulltext/S1931-3128(2...
noyeastguy 3y ago
[flagged]
- Jacky4Chan 3y ago
  Source?
- dang 3y ago
  Not to be the tool of Big Yeast or anything, but single-purpose accounts aren't allowed on HN. That's because pursuing a fixed, pre-existing agenda is incompatible with the curious conversation we want on HN, which is unpredictable and free ranging. So I'm afraid we have to ban this account. If you want to participate as a community member—i.e. posting and discussing on a variety of topics of interest as curiosity moves you—you're of course welcome. A little yeast or no-yeast is reasonable as part of a mix alongside everything else, but we don't want campaigns here.
- deleted 3y ago
  [deleted]
- deleted 3y ago
  [deleted]
ipunchghosts 3y ago
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.
deleted 3y ago
[deleted]
thedailymail 3y ago
Is there a sex-specific difference in gut immunity that would account for the much higher prevalence of CFS in women?
- gymbeaux 3y ago
  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.

80 points by vincvinc 3y ago

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-butyricum-revisited/ 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/ 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/ 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.

zingababba 3y ago
I use butyric acid. Anecdotally it is one of the few things I've tried that actually helps with my stomach issues.

imwillofficial 3y ago

I hope they figure something out ::slams 5th cup of coffee::

GordonS 3y ago
Do you have CFS? Personally, I find that coffee doesn't do very much to help.
- imwillofficial 3y ago
  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.
  - digging 3y ago
    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.
    - TeffenEllis 3y ago
      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.

ilya_m 3y ago

Betteridge's law of headlines: "Any headline that ends in a question mark can be answered by the word no."

accoil 3y ago
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."
- ben_w 3y ago
  Goodhart's law of headlines: Any quick measure for recognising and avoiding clickbait, when widely shared and applied, stops being a good measure.

jsbisviewtiful 3y ago

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.

throwawaycities 3y ago
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.
- elmomle 3y ago
  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!
  - 3y ago

pella 3y ago

imho: this is a slightly better link: "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-microbiome-changes-may-be-signature-mecfs 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(23)00029-X 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(23)00021-5 https://www.cell.com/cell-host-microbe/fulltext/S1931-3128(2...

noyeastguy 3y ago

[flagged]

Jacky4Chan 3y ago
Source?
dang 3y ago
Not to be the tool of Big Yeast or anything, but single-purpose accounts aren't allowed on HN. That's because pursuing a fixed, pre-existing agenda is incompatible with the curious conversation we want on HN, which is unpredictable and free ranging. So I'm afraid we have to ban this account. If you want to participate as a community member—i.e. posting and discussing on a variety of topics of interest as curiosity moves you—you're of course welcome. A little yeast or no-yeast is reasonable as part of a mix alongside everything else, but we don't want campaigns here.
deleted 3y ago
[deleted]
deleted 3y ago
[deleted]

ipunchghosts 3y ago

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.

deleted 3y ago

[deleted]

thedailymail 3y ago

Is there a sex-specific difference in gut immunity that would account for the much higher prevalence of CFS in women?

gymbeaux 3y ago
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.