ME/CFS researcher Derya Unutmaz's hypothesis on cause of ME/CFS....

[ljimbo423]

As has been pointed out elsewhere in this forum, infections, immune system, mitochondria, oxidative and nitrosative stress, etc. can all play a role,

Most or all of which can be explained by Derya Unutmaz and Chris Armstrong's hypotheses.

I think their hypotheses are the core issue in ME/CFS. Will there be subsets of people that have other issues or additional infections etc. to address, almost certainly.

I don't think that negates their hypotheses, that the gut is the core issue.

He recommended I use glyphosate to restore my microbiome, so I'm a bit skeptical of his suggestions.

That seems a bit out there. He must of been having a bad day, I hope!

 

[Wishful]

The only prominent patient I know of that recovered fully from probiotics is Ken Lassesen and I read his blog with great interest.

I can't accept that as strong evidence, because he might have recovered from other causes. ME is really hard to test treatments on because it responds to so many variables that it's hard to isolate which one was responsible. For my own experiments, I try to repeat at least three times before accepting results as 'likely'.

If ME/CFS was caused by gut problems, I would expect a lot more cases to occur in people with serious gut problems, who I expect greatly outnumber ME/CFS victims. I agree with the other people who feel that it's more likely that ME/CFS causes gut problems than gut problems causes ME/CFS.

 

[FMMM1]

There are indeed many variables and though the digestive system is important, it is not the only set of variables.



Ken has been a patient in the same naturopathic practice as I've gone to. The interventions he did were far more than just treating his gut. I called him on it, and he agreed, saying that most patients couldn't afford to do what he did, so he thought focusing on the gut is a low cost thing most patients can try.

He recommended I use glyphosate to restore my microbiome, so I'm a bit skeptical of his suggestions.

As has been pointed out elsewhere in this forum, infections, immune system, mitochondria, oxidative and nitrosative stress, etc. can all play a role, and the researchers have been saying there are subsets of us patients, so until 25 years from now when they have this all figured out, our best bet might just be to look for our own set of weird variables and try to normalize them through treatment and hope for the best, using the clues the researchers are turning up as guideposts.

At the moment our understanding of ME/CFS is very low; therefore, a statement that it will take 25 years is based on current knowledge i.e. very little.

Check out Jen Brea's Ted Talk etc. She mentions Helicobacter pylori which causes ulcers. Until a doctor infected himself and treated himself (i.e. found cause and cure) you could say it will take 25 years --- 1000 years. It took a relatively short space of time after the discovery of H pylori.

I reckon that if the metabolic trap theory is correct (at least for some people) then the turn around would be relatrively quick. I'm concerned that for some/many it will take longer but look at current technology; Ron Davis said (video - OMF site re viruses in ME/CFS) that today it would take 48 hours to identify the aids virus and identify potential drugs, it took years in the 1980s.

Ron also pointed out that scientists tend to overestimate what they can do in the short term and underestimate what they can do in the long term.

We need some hard science; at last we seem to be getting some more good science funded which should help to understand this.

 

[pamojja]

It's because he just quotes from various studies depending on what bacteria pop up, without screening for whether they make sense or not (or conflict with each other).

And at his site read the disclaimer:

Items in the recommendations are directly from scientific literature with no filtering. Some may be clearly unreasonable - for example "RoundUp".

 

[Learner1]

Exactly.

 

[Learner1]

At the moment our understanding of ME/CFS is very low; therefore, a statement that it will take 25 years is based on current knowledge i.e. very little.

My point was we are nowhere near a standard of care. For those of us over 50 (or snybage, for that matter) we don't have the luxury of sitting around for the answer to be discovered and handed to us - for most of us, if we are to get well, its experimenting with the hunches we and our doctors have.

We need some hard science; at last we seem to be getting some more good science funded which should help to understand this.

Part of my viewpoint comes from having a stage 3 cancer, where the doctor pointed to a box in a chart and said, "This is the national standard of care for your stage and grade of cancer - this is the treatment you'll get," as if all the science were known, and there have been billions spent on cancer research.

Well, it seems to be partly my genes, partly because I was carrying a load of viruses and toxicity, but that well-researched treatment led to my ME/CFS.

We are individuals, and for every point solution for this disease, there will be a need for personalized medicine. And I think this gets forgotten in the discussion of moon launches for curing diseases.

 

[ljimbo423]

@pamojja posted-

Items in the recommendations are directly from scientific literature with no filtering. Some may be clearly unreasonable - for example "RoundUp".

As I understand that quote from Ken Lessesen he is saying that the recommendations in the scientific literature about roundup were "clearly unreasonable".

It doesn't sound to me like he is recommending it in any way.

I also found 2 pages on his blog where he clearly points out his views that roundup or glycophosphate is very toxic and should be avoided whenever possible.

Page 1- The Good Food List for glyphosate reduction

Page 2- Roundup and food grown with roundup

 

[FMMM1]

My point was we are nowhere near a standard of care. For those of us over 50 (or snybage, for that matter) we don't have the luxury of sitting around for the answer to be discovered and handed to us - for most of us, if we are to get well, its experimenting with the hunches we and our doctors have.

Part of my viewpoint comes from having a stage 3 cancer, where the doctor pointed to a box in a chart and said, "This is the national standard of care for your stage and grade of cancer - this is the treatment you'll get," as if all the science were known, and there have been billions spent on cancer research.

Well, it seems to be partly my genes, partly because I was carrying a load of viruses and toxicity, but that well-researched treatment led to my ME/CFS.

We are individuals, and for every point solution for this disease, there will be a need for personalized medicine. And I think this gets forgotten in the discussion of moon launches for curing diseases.

I was thinking that I should have directed you to Jen Brea's comments (and discussion of same) re time taken to develop drugs etc to treat/cure ME/CFS.

I'm worried that this may take a long time as well.

The situation isn't helped by difficulties in funding research.

However we have seen some progress e.g. Ron Davis/OMF. I'm hoping that the metabolic trap theory may help some people and help explain ME/CFS generally.

I think you're correct about personalised medicine e.g. the system is set up to deal with large groups (drug development etc) rather than small groups where the costs are commercially unattractive.

I sometimes forget the stakes here.

I hope this works out for you and for all those who are/whose families are effected.

 

[perrier]

I wonder what causes leaky.

Check out Chris Armstrong's response to questions (following his 2016 webinar) on this site.

Chris, in response to one question, points out that exercise increases translocation of bacteria/bacterial toxins i.e intestinal bacterial move across into the blood stream. Chris also points out that normally you can deal with this; however, a shift to more pathogenic species (owing to metabolic change) may mean that you cannot deal with the bacteria/bacterial toxins.

alex3619 pointed out that we currently do not understand type 2 diabetes; however, we can treat it. Alex's point (from memory) is that we may not understand ME/CFS but we could potentially learn to treat it.

I wonder what fixes "leaky"???

We have purchased every supplement on earth that is supposed to address this, as well as altering diet, and if the illness is still there, so is leaky, I guess.

 

[perrier]

I was thinking that I should have directed you to Jen Brea's comments (and discussion of same) re time taken to develop drugs etc to treat/cure ME/CFS.

I'm worried that this may take a long time as well.

The situation isn't helped by difficulties in funding research.

However we have seen some progress e.g. Ron Davis/OMF. I'm hoping that the metabolic trap theory may help some people and help explain ME/CFS generally.

I think you're correct about personalised medicine e.g. the system is set up to deal with large groups (drug development etc) rather than small groups where the costs are commercially unattractive.

I sometimes forget the stakes here.

I hope this works out for you and for all those who are/whose families are effected.

Am I correct in understanding that no person is being tested now for reversing the metabolic trap; are the tests still in the Petri dish? I'm just trying to determine how will it be known that it works. Thanks

 

[mariovitali]

I wonder what fixes "leaky"???

We have purchased every supplement on earth that is supposed to address this, as well as altering diet, and if the illness is still there, so is leaky, I guess.

Have you tried Butyrate ?

 

[junkcrap50]

I wonder what fixes "leaky"???

We have purchased every supplement on earth that is supposed to address this, as well as altering diet, and if the illness is still there, so is leaky, I guess.

Supposedly, the product Restore aka Restore4Life will cure leaky gut, but it's high price is downright criminal. Considering what it's made of, lignite (peat coal) dissolved in water, it's disgusting the price it commands. Theoretically, you could make your own. I've been meaning to post some of their white papers and youtube videos showing fairly convincing evidence that it actually does work and repairs tight junctions.

It don't take it regularly because of how expensive it is, but I do take it before and after eating gluten - if I go out and have a slice of pie or cake or something. And I don't notice any bloating, foul gas, and change in stool despite eating gluten if I take it. So I think it works. I think it works better than gluten-ease or other anti-gluten enzymes (which I also take, but did at one point take each independently to compare them).

 

[perrier]

Supposedly, the product Restore aka Restore4Life will cure leaky gut, but it's high price is downright criminal. Considering what it's made of, lignite (peat coal) dissolved in water, it's disgusting the price it commands. Theoretically, you could make your own. I've been meaning to post some of their white papers and youtube videos showing fairly convincing evidence that it actually does work and repairs tight junctions.

It don't take it regularly because of how expensive it is, but I do take it before and after eating gluten - if I go out and have a slice of pie or cake or something. And I don't notice any bloating, foul gas, and change in stool despite eating gluten if I take it. So I think it works. I think it works better than gluten-ease or other anti-gluten enzymes (which I also take, but did at one point take each independently to compare them).

Dear JC
We have this product. How do you know it works? And should the dose be the one on the bottle? Since consummated no it not much is changed, non stop PEM,etc

 

[perrier]

Have you tried Butyrate ?

Dear Mario, Which butyrate? We did have a product with that in the name. But what specifically have you in mind?

 

[mariovitali]

Dear Mario, Which butyrate? We did have a product with that in the name. But what specifically have you in mind?

I actually was referring to Butyric acid (sorry for not being specific) :

https://en.wikipedia.org/wiki/Butyric_acid

 

[M Paine]

I wonder what fixes "leaky"???

This is the thing, it's not clear what "leaky gut" is caused by. We know for example that there are many cytokines which alter epithelial and endothelial barrier function, including the epithelium of the gut, or the blood brain barrier. We also know that the immune system plays a large role in lining the gut with absolutely massive quantities of immunoglobulin IgA (SIgA). The loss of SIgA correlates with LPS in the blood.

So lets just say for argument sake, CFS is a disease state caused by an immune system gone awry, and immune signalling, or malfunction is allowing microbial products to 'leak' out of the gut... then the fix isn't going to be applied to the gut. It's going to be addressing the immune system fault which causes rampant inflammation and loss of barrier function.

On the other hand, if there is an issue in the gut, such as a small intestinal bacterial overgrowth, which is caused by a metabolic disease state like the metabolic trap hypothesis (or some other cause), then sure... the microbiome might be altered and a fix could come from some other therapy.

My point is, I wouldn't waste my time and effort on any leaky gut routine. There's no shortage of people sharing their stories of something that worked for them. Great, but for each of those stories there is a wealth of people stopping by to say "it didn't do anything for me". You can literally spend thousands of dollars on supplements and other products. Great if you can afford it. We're all super eager to get well, but if there's a working fix out there, it's going to spread fast like wild fire. If something worked, we'd all be doing it.

 

[FMMM1]

Am I correct in understanding that no person is being tested now for reversing the metabolic trap; are the tests still in the Petri dish? I'm just trying to determine how will it be known that it works. Thanks

Good question and I guess you could ask OMF - Janet Defoe/Ben H.

I'm guessing that it's petri dish i.e. take cells add X look for Y.

I assume that you need proof of concept (if that's what it's called) before you could treat people. Janet Defoe's been quite clear that they are concerned that people will try this at home (risking their health) hence they are not publicising what they are doing at his stage.

 

[FMMM1]

I wonder what fixes "leaky"???

We have purchased every supplement on earth that is supposed to address this, as well as altering diet, and if the illness is still there, so is leaky, I guess.

If you were OK before you came down with ME/CFS, and the problem is altered metabolism, then if you can reverse the metabolic problem (metabolic trap) the gut problems should resolve by themselves. I.e. if I understand it correctly Ron Davis/Chris Armstrong/Phair are suggesting that it could all be consequence of the altered metabolism.

Check out M Paine comments above (only scanned it briefly), he obviously understand this much better than I do.

I seem to recall Baraniuk's 2017 paper regarding leaky blood brain barrier (tight junction proteins); I was a bit surprised that they also turn up in the gut blood barrier but I've only had a brief look on the web.

If it's leaky gut not resolved by altered metabolism then I'm guessing that OMF (and others) will be looking at possible drugs etc.

 

[mariovitali]

Title : The Gut-Liver Axis and the intersection with the microbiome


https://www.nature.com/articles/s41575-018-0011-z


Some excerpts :

• Alcoholic and nonalcoholic fatty liver diseases share key characteristics, such as intestinal dysbiosis, gut permeability and shifts in levels of bile acids, ethanol and choline metabolites

and (recall that Bile Acid metabolism issues have been found to ME/CFS Patients)

BAs and the gut microbiota closely interact and modulate each other; BAs exert direct control on the intestinal microbiota. By binding to FXR, they induce production of antimicrobial peptides (AMPs) such as angiogenin 1 and RNase family member 4, which are directly involved in inhibiting gut microbial overgrowth and subsequent gut barrier dysfunction

and

Intestinal permeability is characterized by compromised tight junctions between enterocytes and is consistently seen across the spectrum of liver diseases66,67. Liver damage is associated with small intestinal bacterial overgrowth (SIBO) and dysbiosis of the lower gastrointestinal tract

 

[unicorn7]

I wonder what fixes "leaky"???

We have purchased every supplement on earth that is supposed to address this, as well as altering diet, and if the illness is still there, so is leaky, I guess.

I think often it's a lot harder than just supplements and diet. Maybe the "easy cases" can get fixed that way and that's why there are succes stories out there.

Leaky gut is just part of the problem. The leaky gut is part of a three-way problem with dysbiosis and overgrowth (SIBO) in the gut and a dysfunction of your immune system.
I think the therapy should be individual and you need to keep testing what is off in your case and medicate/supplement accordingly.