It's all in the Gut. Why we get ME/CFS

[Enid]

Yes this is a vital topic JPV - and isn't a major part of the Immune System in the gut. Thanks kurt too for mentioning Polio - presumably latent for me - all the symptoms early on muscles "frozen" - could barely breathe or swallow at one stage (amongst other things) - Immune System overwhelmed my simplistic conclusion - probably from infection/overgrowth/interactions etc in the gut. Could there be a "tipping of the balance" allowing different individual latent viruses expression.

 

[redo]

I'll take your word for it for the moment since I don't feel like doing the background research tonight.

I still feel that the more straightforward explanation lies with a root cause that directly impairs the immune system allowing other infections to take hold. Over and over we find PWCs with infections that they should be able to clear or keep in latency -- Lyme, herpesviruses, unwanted gut bacteria and so on. I believe any postulated cause needs to address the question of why we are unable to suppress "normal" infections.

I get what you're thinking. But I am thinking it's not nessecarily that way. It could be XMRV as an "enabler" for unwanted microbes taking over in the gut (and both of them being immune supressive, making it harder to get rid if other infections). And, with the gut hypothesis, it might be just the gut microbes which are having a large impact on the immune system.

 

[Enid]

Following your thinking redo - aetiology difficult - I think the reason the Iime conference (London May) will bring together so many varied specialists is to share/discuss and hopefully be able to resolve. I agree with your thoughts about an "enabler" which sets the whole "thing" in motion. From what I hear K de M is finding viruses needing treatment (XMRV/MLVs positive). Chia finds many enteroviruses (latents ?) be interesting to hear his latest research/findings/thoughts too.

 

[lansbergen]

I get what you're thinking. But I am thinking it's not nessecarily that way. It could be XMRV as an "enabler" for unwanted microbes taking over in the gut (and both of them being immune supressive, making it harder to get rid if other infections). And, with the gut hypothesis, it might be just the gut microbes which are having a large impact on the immune system.

In the monkey study XMRV is found in CD4 cells in the gastrointestinal lamina propria.

This layer of the mucosa is not part of the gut flora. Treating gut flora will not make the virus go away. As long as the virus is present it can be activated by any stressor.

I call that mopping with the tap open.

 

[Enid]

Interesting lansbergen - thanks for posting. Could it be termed the "reservoir" of infection too that all seem to seek.

 

[redo]

lansbergen.

That is given that it's the XMRV which causes the symptoms, and not a gut microbe, such as clostridum. I've not said that treating the gut flora will make the virus go away. Nor have I said treating the gut flora (with a faecal transplant) will make the harmful microbes in the gut go away.

If the XMRV can found in the gastrointestinal lamina propria (I can only tell by the name, but that sounds like it's near the gut), then that just adds to me thinking that XMRV may be an enabler for microbes in the gut.

And. Mopping with the tap open is better than not mopping at all. If we can get better with doing a faecal transplant, then I'd have no problems with trying that "mopping" out.

 

[lansbergen]

@lansbergen.
And. Mopping with the tap open is better than not mopping at all. If we can get better with doing a faecal-transplant then I'd have no problems with trying that "mopping" out.

I wish you good luck.

 

[kurt]

That is given that it's the XMRV which causes the symptoms, and not a gut microbe, such as clostridum. I've not said that treating the gut flora will make the virus go away. Nor have I said treating the gut flora (with a faecal transplant) will make the harmful microbes in the gut go away.
If the XMRV can found in the gastrointestinal lamina propria (I can only tell by the name, but that sounds like it's near the gut), then that just adds to me thinking that XMRV may be an enabler for microbes in the gut.
And. Mopping with the tap open is better than not mopping at all. If we can get better with doing a faecal transplant, then I'd have no problems with trying that "mopping" out.

The idea that something deeper in the gut is the core pathology makes sense, if this were just flora, probiotics would help a great deal, but I have never met a CFS patient cured by probiotics. In fact many say probiotics make them sick, which I think suggests that the probiotics are actually feeding some other pathogen, or increasing some part of the digestive imbalance.

Not sure how you came up with the idea that XMRV is causing CFS symptoms. First of all, XMRV is still very hypothetical, certainly not proven to be the cause of CFS, so that is not a given. However, I think you present a useful model for what might be going on, although I suspect some other virus is probably the culprit. What seems highly probable to me is a highly contagious enterovirus, perhaps in the polio family (such as coxsackie) or perhaps even some other enteroviral family (there are several that could be responsible for 'outbreaks' of CFS). Something people with certain immune genetics or with pre-existing immune or gut-neuro pathologies can not defend against as well as other people.

So if we have a mystery gut virus deeply embedded in the gut, beyond the flora, and that virus is somehow creating an immune dysfunction, in the B-cells perhaps, then in fact it might facilitate the dysbiosis of OTHER bacteria or parasitic or even fungal infections. And those secondary imbalances might create the symptoms of CFS. Particularly those producing H2S.

I think there is strong anecdotal evidence for this scenario in temporary treatment successes from various gut interventions. Some people with CFS have had temporary remissions after colonoscopy, for example. This is believed to be due to the chemicals used to clear out the gut. The wife of a former co-worker of mine had moderate (not severe) CFS/Fibro, and she had this experience. Her husband encouraged me to try the chemicals, maybe I should have... But the effect on his wife was temporary, after a few months the CFS/Fibro came back. So something deeper was involved. Then there are the people with CFS who have had head injuries and been in a coma for a few months, who no longer had CFS when they recover. I've never heard an explanation for this, but have heard of at least two cases, and wonder whether this was due to use of IV feeding for those months, allowing the immune system to finally defeat some mystery virus, and allow the gut to repair and re-balance its flora.

Incidentally, I think there are non-viral candidates for this scenario as well, spirochetes, micro-bacteria, maybe even toxin and chemical damage deep in the gut for some people. Perhaps even methylation problems. In my own case, B12 has done more for my gut than years of various probiotics.

My take-away from this is that we need some serious GI researchers to study CFS patients.

 

[Enid]

Very interesting - thanks Kurt. Much hoping researchers with all their current findings will try to reason through too. The "temporary relief" you mention sounds a pretty important clue for greater understanding of the whole "picture" too. And on another thread "do you feel better when you don't eat" the answer seems to be yes as a temporay measure - starving/reducing the bad guys out ?

 

[fla]

In the cases of the coma/IV feeding cures, did the CFS symptoms eventually return or was it a permanent cure?

 

[Cloud]

Kurt....I tend to feel mostly the same about this issue. I have long believed that something in the GI system is close to the core of this problem for many reasons. I like the idea that there's something even deeper than the disrupted bacterial flora...and maybe even influencing that imbalance for self protective or symbiotic purposes. I like this idea because it fits with my experience of treating dysbiosis only providing temporary relief before bouncing right back to it's previous condition.

 

[JPV]

The idea that something deeper in the gut is the core pathology makes sense, if this were just flora, probiotics would help a great deal, but I have never met a CFS patient cured by probiotics. In fact many say probiotics make them sick, which I think suggests that the probiotics are actually feeding some other pathogen, or increasing some part of the digestive imbalance.

This is real hard to interpret without detailed information. What sort of probiotics and what dosages? There is much anecdotal evidence that D-Lactate aggravates CFS symptoms. Most probiotics are also sold in uselessly small quantities.

 

[kurt]

In the cases of the coma/IV feeding cures, did the CFS symptoms eventually return or was it a permanent cure?

What I recall from two coma cases discussed on another forum years ago was that one was fairly permanent remission. I don't believe the long-term outcome of the other case was reported.

There was another case of a woman who had one half of the amygdala removed, due to a brain tumor, and recovered from her CFS. I always thought in the past that recovery story was from reducing her fight-flight response. Now I wonder if the level of bloodflow to the gut also improved as the flight-flight responses normalized. This gut explanation might be able to come 'full circle' with several types of successful treatments.

 

[sensing progress]

I do believe that the gut plays a critical role in developing and/or maintaining CFS illness. The more I read about Leaky Gut Syndrome the more I think it explains a lot of my own symptoms.

 

[Enid]

Can I throw into the mix - a friend currently under K de M and found MLV positive is receiving (don't know exact dosage) - 6 courses of Antibiotics, LOTS of Probiotics, Nexavir, B12, Vit/Mins, Ess Fatty Acids, Vit C, and GcMaf. Lots of Probiotics advised stands out. (I've upped mine whilst appreciating that "lots of" may relate to the antibiotic treatment and added a Biocare Permatrol for leaky gut - on the simplistic principle of crowd the bad guys out/heal).

 

[lucy]

I was also recently reading about the vagus nerve - it seems that the nerve regulates CD4+ T cell activity, which in turn is a very important messenger in inflammation. Vagus nerve goes through the chest, stomach and gut. If one has a messed up gut, the vagus nerve can be messed up too. I cannot recommend precise articles, but if you google "Gut inflammation vagus nerve", you will find the links.

 

[pine108kell]

I didn't have time to read all these posts, so sorry if I am repeating something.

Maybe it is the gut, but I sure don't have the typical symptoms one would expect from gut problems. Although I generally eat well, I can tolerate almost anything. I rarely have gas, bloating, stomach pain, or anything normally related to gut problems. I can eat hot peppers, dairy etc., you name it. I don't take many medications but my gut has tolerated all of them. Almost nothing has changed about my digestive system since I got ill. Its everything else that doesn't work.

 

[redo]

The idea that something deeper in the gut is the core pathology makes sense, if this were just flora, probiotics would help a great deal, but I have never met a CFS patient cured by probiotics. In fact many say probiotics make them sick, which I think suggests that the probiotics are actually feeding some other pathogen, or increasing some part of the digestive imbalance.

I'd say both yes and no. Yes, it would be logical that probiotics would help if the problems are with the gut flora. But on the other hand, changing the gut flora is really difficult to do. Probiotics may contribute in the right direction (or the wrong direction), but they are not able to change the composition of the gut flora for long and they probably aren't able to change it enough.

Correct me if I am wrong, but isn't the gut flora the sum of microbes with are "inhabitants" in the gut? (easily put)

Not sure how you came up with the idea that XMRV is causing CFS symptoms.

.

I am guessing it is a misunderstanding here. I haven't written that I think that it's XMRV which is causing the symptoms. I wrote that XMRV may be an enabler (by "pulling the rug underneath the immune system which is responsible for regulating the gut flora), and thereby the gut flora gets changed in a way which causes severe illness (such as overgrowth of the pathogenic clostridum strains).

First of all, XMRV is still very hypothetical, certainly not proven to be the cause of CFS, so that is not a given. However, I think you present a useful model for what might be going on, although I suspect some other virus is probably the culprit. What seems highly probable to me is a highly contagious enterovirus, perhaps in the polio family (such as coxsackie) or perhaps even some other enteroviral family (there are several that could be responsible for 'outbreaks' of CFS).

.

Agree. We gotta put up models, and try to see if we can disprove the model. I am with you on that it might very well be other viruses causing problems (as in the immune system not being able to regulate the gut) with the gut flora (or no viruses). H2S is a good clue to what's going on. When that is as high as it is, as often as it is, I think we're onto something. Not sure if I misunderstood you though, I might have.

 

[redo]

I didn't have time to read all these posts, so sorry if I am repeating something.

Maybe it is the gut, but I sure don't have the typical symptoms one would expect from gut problems. Although I generally eat well, I can tolerate almost anything. I rarely have gas, bloating, stomach pain, or anything normally related to gut problems. I can eat hot peppers, dairy etc., you name it. I don't take many medications but my gut has tolerated all of them. Almost nothing has changed about my digestive system since I got ill. Its everything else that doesn't work.

If a gut microbe (such as one or more strains of clostridum) are behind this, we don't necessarily have to feel something... Yes, we would if it was c. diff, but other strains might not work the same way.

Since these microbes are present (in low levels) in most healthy individuals, I am thinking it might be something specific which makes us unable to control the flora in the gut as we should. It might be that the harmful microbes have got the "upper hand", and we no longer are able to keep them down (the reason for them gaining the upper hand may be temporary immune problems such as EBV, vaccines, stress etc). But it might also be that a specific virus such as XMRV (or others) are what which makes us unable to control the gut like we should, and then all of this breaks loose.

That's my theory.

 

[redo]

And if it holds true that much of the problems are located in the gut, then it makes great sense to see that CFS patients have abnormally often food intolerances. Let's say that clostridum strain x was causing havoc in the gut, then it wouldn't be illogical if that could lead to problems with food x, y and z. Especially foods which that particular strains feed most effectively off (some bacteria are effective breaking down some food, other other foods).