What has learning about gut microbiome done to your ME?

[Davsey27]

Curious

There is increasing research out there regarding gut bacteria and the microbiome.I don't understand this very well but I imagine this may be important.I don't know there is a part of me that believes that an invader like a herpes virus is attacking the gut and maybe not a problem in bacteria ratios but I could be mistaken.


With what I see most people ordering everyday in their groceries and understand that most of these people dont have ME/CFS I question what the cause of this is.I can understand that certain foods are better for gut health but before ME/CFS I didnt have all of these food sensitivities.I know the gut is important to immune health but wonder if the microbiome is really what is driving ME/CFS or if is Herpes or a retrovirus inflaming the gut.

Thank You

 

[Wishful]

I think that some PWME have additional problems because of gut issues, but others have ME without gut issues. My ME started with a severe comorbid problem: type IV food sensitivity. That lasted 2.5 years, despite many dietary changes, candida treatments, and antibiotics. Then a bout of food poisoning flushed something out, which I assume allowed my gut microbiome to stabilize in a new arrangement, and the type IV reaction was gone. So yes, gut issues can affect you, and yes, it is possible to treat or even cure them...without necessarily reducing your ME symptoms. It's also not necessarily easy, as all those dietary changes and treatments did nothing for me, and it was an accident that cured it.

I do recommend experimenting with dietary changes. Even if it doesn't treat anything, it may reveal foods, or foods at times of day, that you should avoid. A rotation diet (having foods from one family no more than once every 5 days) is something to try (although it isn't much fun ). You can find lots of suggestions for other treatments or practices to 'help your gut microbiome'. You can try them, and it's possible that one or more might make a noticeable difference or even a big difference, but keep in mind that none are guaranteed to work for you, regardless of what the marketing claims or glowing reviews say.

 

[ebethc]

My ME started with a severe comorbid problem: type IV food sensitivity. That lasted 2.5 years, despite many dietary changes, candida treatments, and antibiotics. Then a bout of food poisoning flushed something out, which I assume allowed my gut microbiome to stabilize in a new arrangement, and the type IV reaction was gone.

what are type IV food sensitivities?
is there a test?
why is it that the type IV reaction are "gone"? is it something that goes into remission, or something else?

 

[Wishful]

Type IV reactions involve t-cells; completely different from standard allergies. They usually have a delay of 48-72 hrs. Mine started with a precise and consistent 48 hrs, +/- just a few minutes. The flu-like (also ME-like) symptoms would flare up, then fade again fairly quickly. When it finally stopped, I didn't realize for several years, since the symptoms remained the same, and were flaring up 20 minutes after eating carbs.

I never managed to find anyone to test for it, but that was before 2003; maybe now there is a test.

I think there was something in my microbiome that was priming my t-cells to react to most foods. Antibiotics might have weakened it, but also weakened the microbial defenses, so it would just build up again. The food poisoning (bad canned coconut milk) probably flushed out enough of the bad microbes that the good microbes could finally wipe them out. One day I was still having type IV reactions to food, and the next day, not. It hasn't returned. I'm guessing that however ME screws up the immune system allowed my t-cells to be overreacting to foods that they normally ignored, because of some molecule released by that evil microbe species.

Spoiled canned coconut milk for the win!

 

[JES]

- My ME/CFS and POTS symptoms reduce temporarily when I'm constipated, so there seems to be some bizarre relation to the microbiome in my case.
- Probiotics are much less useful in altering microbiome than the hype has lead us to believe. Most probiotics, especially lactic acid bacteria, typically only colonize the gut temporarily and are gone within 72 hours. Soil-based probiotics I found even harmful and one of them triggered a massive flare. Too little is known in this area to recommend any particular probiotic for pretty much anything.
- Still looking into FMT, this has much more potential than a probiotic pill. Biggest problems with FMTs are availability, price and safety. None of this is at the point where I feel safe experimenting with it, but I would instantly try if those three issues were sorted.
- Food sensitivities don't seem a big factor in my case, but diet is probably a useful tool in making some impact on your microbiome. I found that reducing complex carbohydrate intake reduced my flu-like feeling. This is probably due to reduced feeding of a dysfunctional microbiome. The problem with this approach is that healthy bacteria use the same food, so in the long term my approach might not be ideal. None of this has worked as a cure for my problems and diet changes will not fix the missing species observed in some ME/CFS patients, but at least it provided slight symptomatic relief.
- Attempts at various leaky gut protocols have provided little to no benefit.

 

[Wishful]

- My ME/CFS and POTS symptoms reduce temporarily when I'm constipated, so there seems to be some bizarre relation to the microbiome in my case.

There are too many other potential explanations for changes while constipated. You've got higher stress on tissues, lower moisture levels, maybe lower O2, probably lots of other non-microbiome factors. Could be microbiome related; could be something else.

If ME was strongly related to the gut, I would expect a lot more variation in symptom severity from changes in diet, timing of meals, etc. My ME symptoms seem remarkably insensitive to these things.

 

[keepswimming]

I have no idea where she got this from, but the therapist I saw at an NHS clinic said the latest research suggests CFS may be connected to the microbiome... However I have never seen this anywhere else so I don't know what research she was talking about 🤷‍♀️

 

[IThinkImTurningJapanese]

If ME was strongly related to the gut, I would expect a lot more variation in symptom severity from changes in diet, timing of meals, etc. My ME symptoms seem remarkably insensitive to these things.

You are lucky, I've spent decades paying dearly for any minor infraction regarding caution about what I consume and when.

I know the gut is important to immune health but wonder if the microbiome is really what is driving ME/CFS

I don't think it's the cause. I have though, found significant help from immunomodulatory microbes.

A breakthrough in probiotics: Clostridium butyricum regulates gut homeostasis and anti-inflammatory response in inflammatory bowel disease

Abstract
Intestinal immune homeostasis is regulated by gut microbiota, including beneficial and pathogenic microorganisms. Imbalance in gut bacterial constituents provokes host proinflammatory responses causing diseases such as inflammatory bowel disease (IBD). The development of next-generation sequencing technology allows the identification of microbiota alterations in IBD. Several studies have shown reduced diversity in the gut microbiota of patients with IBD. Advances in gnotobiotic technology have made possible analysis of the role of specific bacterial strains in immune cells in the intestine. Using these techniques, we have shown that Clostridium butyricum as a probiotic induces interleukin-10-producing macrophages in inflamed mucosa via the Toll-like receptor 2/myeloid differentiation primary response gene 88 pathway to prevent acute experimental colitis. In this review, we focus on the new approaches for the role of specific bacterial strains in immunological responses, as well as the potential of bacterial therapy for IBD treatments.

 

[Wishful]

You are lucky, I've spent decades paying dearly for any minor infraction regarding caution about what I consume and when.

Yes, we vary widely on what happens as a result of ME, with some people becoming very sensitive to various factors. This might be sensitivity of the core problem of ME (whatever that is) or it might be that the changes caused by ME makes other systems more sensitive.