SIBO and ME/CFS similarities ......

[nerd]

My wife, for example, has equally sky-high EBV antibodies, but no chronic fatigue.

The correlation of antibodies doesn't make them an adequate biomarker with sufficient specificity for chronic diseases. It just means that chronic diseases are more likely. The HLA genome also plays a large role when it comes to susceptibility to pathogen-induced chronic diseases. If you have a high antibody count, you either got infected with a large inoculum, or you got reinfected regularly (if you have a lot of intimate/personal contact), or you had a long infection phase due to your immune system, vitamin deficiency or stress and the many other contributing factors.

Does this indicate a remnant condition, rather than something treatable?

Everything is treatable if you have full knowledge of the underlying pathology and the right technology available. But this might take a lot of time to figure out, and a lot of interested parties demanding their share. If this theory is true, it is more than just a remnant/latent infection, and an antiviral treatment might not be the first choice, just as it isn't the right choice for SLE and other EBV-associated diseases. The presumed problem lies within lymphocytes and/or the lymphoid system. This makes it difficult. Only a part of the whole lymphocyte population circulates in the blood. There are existing immunological treatments such as immune modulation, lymphocyte transfusion, lymphocyte filtration, the surgical removal of lymph nodes and the thymus, which could be applied as they are already being applied for MG. They often work for MG but you can't remove the whole lymph system, so it's no wonder pill. This is why an extensive immunological diagnosis of the lymphoid system of CFS/ME patients could clarify important questions in a study. Is the thymus always affected, as for MG?

For MG, you also have adequate symptomatic treatment via AChE inhibitors. Because the core pathology of the disease is known, though not much of the pathogenesis. With CFS/ME, we aren't even at this point. I think this is because CFS/ME is too complex to narrow it down to a specific antibody group or biomarker. It's not much different for rheumatoid diseases. But rheumatoid diseases have been researched extensively. With CFS/ME research, it's more like everyone skips from diagnosis to treatment and hopes to achieve significant results because they focus on a single aspect of the disease's pathology that is known. Maybe the EncodeME study can soon clarify some questions by narrowing down the susceptible genes and which genes correlate with disease severity. This allows for some important inferences.

 

[LINE]

Indeed! We have to stay open-minded. In fact, I have my own theory that a subgroup of MG (Myasthenia Garvis) patients is confused with CFS/ME, especially seronegative ones. I only have anecdotal evidence and a theory, though. Unlike GIS treatment for CFS/ME, a certain type of MG pathology and therapy (i.e. thymus-focused) has never been studied. There isn't even a correlation study on thymus hyperplasia with CFS/ME. The presumed pathophysiology of both conditions is pathogen-induced, especially by herpes viruses such as EBV. I might explain this in another post eventually, why I think this hypothesis should be evaluated.

I'm only mentioning this here to show that there are many other theories and conditions which share these symptoms, even including PEM, tachycardia, immune dysfunction, etc. But our current medical research system isn't really organized to cross-evaluate data with similar/coinciding conditions. For guidelines to include most differential (co-)diagnoses, such studies are urgently necessary. Instead, every department and expert center does their own thing and drives their own specific theory further. No wonder there isn't any consensus with CFS/ME. If you meta-analyzed all of the available data, you might be able to exclude certain things such as psychosomatic illness because all physiological studies contradict this theory if accumulated. Everyone assumes that their own theory is the right one and the others are wrong. Similar things can be observed with COVID-19 research.

\
I hope my comment did come across as being snarky. Thank you for your contributions.

 

[EddieB]

CFS/ME research is certainly a gray area. Every point can be both supported and argued. The only thing that matters is that you provide the right treatment and get the result. If I don't get the result, then I modify my theory and reapply, this method has been successful for me.

Agreed.

I hope my comment did come across as being snarky.

I think you meant “didn’t”. I don’t think so. I hope mine aren’t either...

There are theories on the origins of me/cfs from here to the moon. I appreciate “nerds” vast knowledge, but the majority of us here are laypeople just looking for a little relief.

I believe the purpose of this thread, was to look at the similarities between me/cfs symptoms and gut function/ dysbiosis. Let’s keep the discussion going...

 

[ljimbo423]

Thomas Borody did a study on ME/CFS patients with what he calls "Bacteriotherapy". He took healthy bacteria from the gut of healthy donors, cultured them and then implanted the cultured bacteria into the gut of ME/CFS patients.

He found a 58%, 15-20 year "complete resolution of symptoms" in the ME/CFS patients.

abstract

Introduction: Chronic Fatigue Syndrome
(CFS) has a complex and multifactorial
etiology making treatment and definitive
diagnosis, currently made through exclusion,
difficult.

Current therapies, such as cognitive
behaviour therapy and graded exercises,
are inadequate and targeted to address
symptoms, rather than the underlying
disease pathology.

Increasing evidence
implicates the microbiota of the gut in a
number of conditions previously thought
distinct from the gastrointestinal system.

Previous work with bacteriotherapy in CFS
has suggested a link between the condition
and the composition and health of the gut
microbiota.

Here, we review and further
examine a larger cohort of CFS patients who
had undergone bacteriotherapy for their
CFS.

Method: A total of 60 patients from the
Centre for Digestive Diseases presented
with CFS. Of these, 52 patients had
concurrent IBS and 4 patients additionally
had constipation.

All underwent initial
transcolonoscopic infusion of 13 nonpathogenic
enteric bacteria. 52/60 patients
undertook an additional rectal infusion a day
later and 3/60 undertook an additional 2
rectal infusions.

Results: 35/60 patients who underwent
initial bacteriotherapy responded to
treatment. 10/15 patients who failed
this course were offered a secondary
transcolonoscopic infusion followed by a
rectal infusion or an oral course of cultured
bacteria.

Of these 7/10 responded, giving
a total of 42/60 (70%) patients who
responded to treatment. Contact was
achieved with 12 patients after 15-20
year follow-up. Complete resolution of
symptoms was maintained in seven of the
twelve patients and 5/12 did not experience
recurrence for approximately 1.5-3 years
post bacteriotherapy.

Conclusion: Bacteriotherapy achieves initial
success rate of 70% in CFS and a 58%
sustained response.

Given that manipulation
of the colonic microbiota improved CFS
symptoms, bacteriotherapy for CFS warrants
further investigation and may provide
further insight into a possible etiology of
CFS.

 

[lenora]

Hello Everyone....IF it is true that the stomach is lined with cells very similar to those in the the brain, it would easily explain why there are so many GI issues among us. I think 90% of us would agree that stress never makes anything better, especially an illness like ME (& cohorts).

Just think of when you're faced with a stressful moment....usually the first thing that tightens up is the stomach in some way or another. We can't feel our brain cells in the same way....the after-effects may show up in a few days under the guise of "brain fog." I wish we had more research on this...and I also wish they'd say for certain whether or not GI and brain cells are the same. It would help. Wishing all of you well. Yours, Lenora.

 

[EddieB]

I wish we had more research on this...and I also wish they'd say for certain whether or not GI and brain cells are the same. It would help.

From my experiences, I’ve seen first hand how much of an impact antidepressants have on my gut, both mildly positive and severely negative. I’ve stated this elsewhere, but l now believe that the majority of antidepressant effects, both positive and negative, are due to changes to the micro biome. Recent studies are showing the same,

https://www.nature.com/articles/s41398-019-0466-x

https://www.drugtargetreview.com/ar...e-be-the-key-to-new-antidepressant-therapies/

https://www.sciencedirect.com/science/article/pii/S0924857918301912

If this doesn’t clearly show a brain/ gut connection, I don’t know what does. It’s time for the medical establishment to take notice. And I don’t mean just throwing antidepressants at the problem either.

 

[LINE]

Agreed.

I think you meant “didn’t”. I don’t think so. I hope mine aren’t either...

There are theories on the origins of me/cfs from here to the moon. I appreciate “nerds” vast knowledge, but the majority of us here are laypeople just looking for a little relief.

I believe the purpose of this thread, was to look at the similarities between me/cfs symptoms and gut function/ dysbiosis. Let’s keep the discussion going...

I think the bigger issue is that immune activation is destructive and changes cell behavior in a myriad of ways. One can reference Lyme studies to see this, Autism studies also prove the immune relationship with neurological abnormalities.

The immune system is the strongest force in the body. It creates some pretty nasty byproducts such as Reactive Nitrogen Species (RNS) and ROS (Reactive Oxygen Species), plus a whole host of other chemicals such as cytokines, these all change cell behavior. In addition to this, the immune system alters the endocrine system.

I have gone through numerous stages of this disease, but things changed dramatically when I contracted a gut bug. As I have addressed the infection, things have turned around.

 

[kangaSue]

Thomas Borody did a study on ME/CFS patients with what he calls "Bacteriotherapy". He took healthy bacteria from the gut of healthy donors, cultured them and then implanted the cultured bacteria into the gut of ME/CFS patients.

He found a 58%, 15-20 year "complete resolution of symptoms" in the ME/CFS patients.

You have to take Borody's findings with a grain of salt because no one else has been able to replicate his results and he won't respond to queries about his methods or findings.

 

[ljimbo423]

You have to take Borody's findings with a grain of salt because no one else has been able to replicate his results and he won't respond to queries about his methods or findings.

Although his results have not been replicated yet, that doesn't mean they are not accurate. He actually is responding to questions about his study methods and findings. I'm sure not everybody's though.

He answered someones email about his methods and findings several months ago. That person shared them with me in a private conversation.

 

[nerd]

Thomas Borody did a study on ME/CFS patients with what he calls "Bacteriotherapy". He took healthy bacteria from the gut of healthy donors, cultured them and then implanted the cultured bacteria into the gut of ME/CFS patients.

He found a 58%, 15-20 year "complete resolution of symptoms" in the ME/CFS patients.

If you can't achieve significant results within one to three years, your therapy doesn't work. There is no need for a "complete resolution" in a study if other studies can't even replicate partial resolutions, It's simply not replicable then. 15-20 years make a study immensely confounded by all kinds of things. Confounding factors only become visible once you include controls in your study.

 

[ljimbo423]

If you can't achieve significant results within one to three years, your therapy doesn't work. There is no need for a "complete resolution" in a study if other studies can't even replicate partial resolutions, It's simply not replicable then. 15-20 years make a study immensely confounded by all kinds of things. Confounding factors only become visible once you include controls in your study.

That's your opinion and you are welcome to it.

As "LINE" said in a prior post in this thread. There can be arguments made both for and against all research about ME/CFS. There is no proven cause.

It's all a matter of opinion. Regardless of how much research I or anyone else shows. It's just opinion, as to weather that research is true or false.

 

[nerd]

That's your opinion and you are welcome to it.

As "LINE" said in a prior post in this thread. There can be arguments made both for and against all research about ME/CFS. There is no proven cause.

It's all a matter of opinion. Regardless of how much research I or anyone else shows. It's just opinion as to weather that research is true or false.

Of course. I didn't mean to offend you or something. We're all in the same boat after all.

 

[nerd]

I encourage you to continue this discussion. But I think it's healthy for a discussion to show multiple points of view about all arguments. I just wanted to give my input on this study. I'm not the type who disagrees just to disagree. I do this for completion's sake. But I will stand back now. I don't want to ruin your mood. This isn't so important.

 

[EddieB]

Ok, so back to discussion...

I moved this posting about colonoscopy to it’s own thread, under”The Gut, SIBO and IBS.

This thread is about SIBO related to ME/CFS, and I went off course. My sincere apologies.
E.

 

[lenora]

There have been so many "reasons" for our illness(es) since I started volunteering in this work about 35-37 yrs. ago (before the computer). It's a big question of well, unproven questions. I don't tend to get excited about research until it has been proven to work.

Personally I feel that there will be many reasons for the suffering of most of us. I'll be really shocked if just one answer comes out of all of this. I'm hopeful that more research is being done than at any other time in our history. I hope that most of you will have answers within the next 10 years or so....and if something else works for you in between, that's wonderful. Feel better. Yours, Lenora.

 

[2Cor.12:19]

​

@EddieB You or others might be interested in this. If you can't listen to this at 5:00. All you need to do is sign up for it and they will email you a replay.

This live call is today at 5:00 Eastern time in the United States. Which is 3 hours from now.

@ljimbo423 Do you have a link for that now?

 

[ljimbo423]

@ljimbo423 Do you have a link for that now?

Yes I do- The podcast is here.

 

[2Cor.12:19]

There have been so many "reasons" for our illness(es) since I started volunteering in this work about 35-37 yrs. ago (before the computer). It's a big question of well, unproven questions. I don't tend to get excited about research until it has been proven to work.

Personally I feel that there will be many reasons for the suffering of most of us. I'll be really shocked if just one answer comes out of all of this. I'm hopeful that more research is being done than at any other time in our history. I hope that most of you will have answers within the next 10 years or so....and if something else works for you in between, that's wonderful. Feel better. Yours, Lenora.

@lenora I hear ya! 35 years for me and every time I received a new diagnosis (be it Hashimotos, Sleep Apnea, Polyneuropathy, gut issues, .or you name it) I got my hopes up. While every new treatment helps to a degree, and some more than others, at the end of the day I’m still disabled with ME/CFS.

I am hopeful that my SIBO, other gut tests, and gallbladder tests will yield some helpful treatments. I gave up on finding the magic bullet years ago, nevertheless, I’m always happy to find anything at all that will improve my health- and especially if it improves my energy and sense of well being.

 

[2Cor.12:19]

Yes I do- The podcast is here.

Awesome- thanks!!!

 

[SwanRonson]

I've been down the SIBO path quite a few times since getting sick. The problem with the entire hypothesis is that nobody knows if those gasses were already present before the illness. I'm not aware of a single A-B comparison where someone had a breath test done before getting sick, then another one afterwards showing the presence of gasses only in the illness state. Without that, SIBO as the causative agent is just conjecture. Not saying it's wrong. It's just not knowable what role it plays, if any.