What are all the theories of what causes ME CFS?

[ljimbo423]

Brain fog cognitive dysfunction moment!

Remind me again - what does the "NTS" stand for?

Could it be nucleus tractus solitarii (NTS) ?

 

[lenora]

These acronyms can be tough at times. So many of them and in so many different fields; although this is obviously a medical term. Sadly, I won't remember even when the question is answered. Yours, Lenora.

 

[SNT Gatchaman]

Do we have an acronym page? Should we start one?

 

[Pyrrhus]

Do we have an acronym page? Should we start one?

Excellent idea!

It could simply be a thread under the "Information and Resources" sub-forum:
https://forums.phoenixrising.me/forums/information-and-resources.49/

 

[Rufous McKinney]

I feel lousy today (unsolicited announcement).

Reading a bit of this....why do my eyes hurt so bad today? What happened? Do we pin this down to I enjoyed the end of a slice of organic whole wheat bread?

 

[nerd]

Could it be nucleus tractus solitarii (NTS) ?

Yes, that's what I meant.

HI @nerd....so should everything with glutamate (supplements mainly) be cut out of the diet, in your opinion?

I certainly think so. But glutamate has a very low bioavailability unless it's taken as a supplement on the empty stomach. It's also consistent with other metabolic theories (e.g. Joshua's as far as I remember) in that alpha-ketoglutarate is tied to glutamate and the conversion between these metabolites depends on the NADP/NADPH and NAD+/NADH balance. This means that a dysfunctional Niacine system can set off the glutamate system and even the citric acid cycle.

But it also means that cell danger response can lead to the same effect by overactivity of hydrogen pumps, which then contribute to the NAD-dysbalance. This is one way of how the pathogen/virus etiology fits in.

But the other side has also to be considered, glutamine that is. Glutaminase overactivity might lead to a glutamatergic susceptibility by glutamine intake. Some people use glutamine for leaky gut treatment, which might not be wise because a leaky gut itself already has the potential for vagus overstimulation, especially due to its chronic nature.

Various caffeines contain glutamine and/or glutamate, so it might explain why some ME patients like myself have different reactions to different caffeine types. I can only handle one or maximum two espresso a day and definitely not on an empty stomach. Matcha, however, I can drink without much of an issue. I'm not sure why that is because otherwise amik

 

[gregh286]

I feel lousy today (unsolicited announcement).

Reading a bit of this....why do my eyes hurt so bad today? What happened? Do we pin this down to I enjoyed the end of a slice of organic whole wheat bread?

Would for me. Air hunger...fatigue...puffy eyes
Some days reaction is insant...some times 2 days later.
I think it affects different immune cells hence its hard to PIN down.

 

[Shanti1]

Matcha, however, I can drink without much of an issue. I'm not sure why that is because otherwise amik

Maybe because of the high L-theanine content in Macha?

 

[Pyrrhus]

I can only handle one or maximum two espresso a day and definitely not on an empty stomach. Matcha, however, I can drink without much of an issue.

I can not tolerate coffee at all, but I drink tea regularly.

The pharmacology of coffee is far more complicated than just caffeine. Personally, I think that caffeine is the least interesting ingredient of coffee. Most of the chemical compounds in coffee have never been studied, which I personally feel is a shame. But I perhaps digress...

 

[SNT Gatchaman]

Do we have an acronym page? Should we start one?

See this post and this post which referenced a (defunct) section from 2011, but I think rather than a series of posts, a wiki-type page that we could add to would be better. Doable?

 

[Pyrrhus]

See this post and this post which referenced a (defunct) section from 2011, but I think rather than a series of posts, a wiki-type page that we could add to would be better. Doable?

If only one person is in charge of the acronyms, then they could start a thread with only one post, and they could be set up to edit that first post in the thread without any time limitations. (Normally, I think you only have 7 days to edit one of your posts.)

If you are an MEpedia editor with at least 50 edits under your belt, then you can also update the MEpedia list of acronyms, which works just like Wikipedia:
https://me-pedia.org/wiki/List_of_abbreviations
(But beware of the fact that MEpedia has no moderators)

 

[Canned]

I think a lot of the known theories don’t exclude each other. For example you could combine the theories and research of Prusty, Chia, Lerner, Hyde and Vanelzakker/Proal.

What I don’t believe is, that there are many different causes to such a unique disease with symptoms like PEM. Especially because the illness starts with an infection in 80% of the cases. In some the Virus stays and is causing symptoms and in others a complete different cause is triggers by the initial infection and is causing the exact same symptoms? Doesn’t sound very likely to me

 

[lenora]

Hello @SATGachaman....I hope this finds you well. I can't access your list of acronyms at the moment, but perhaps the following could be added:

SM.....Syringomyelia. Cysts form inside the spinal cord.

ACM - Arnold-Chiari Malformation. Often accompanies SM and the repair for both is now actually done via the brainstem. ACMRepair. Both problems are now diagnosed by an MRI, so a doctor should always look for them.

Thanks for you great effort in putting together this page. I'm sure that many (certainly including me) will find it helpful. I hope it's listed on the front so people know it exists. Take good care. Yours, Lenora.

 

[Reading_Steiner]

Loads of theories but no really strong leads it seems, I hope Dr Davis can fix those robots soon, I haven't really heard much news recently, I know theres been conferences and stuff going on but no big announcements or promising progress down the various lines of inquiry, I know theres a big thing happening this week " From 12:30-4pm EST on Saturday, Oct 23rd, we’ll find out what Nath, Hanson, Lipkin, Unutmaz and Bateman have learned thus far about ME/CFS. "

I think that whatever the common denominator between patients is in Mild and Moderate, is probably the same thing, but then when people go into "Severe" for more than a week, there may actually be one or more different mechanisms going on there, that have some association or original causal link with the original 'common denominator' ( whatever causes PEM in mild patients ), but its possible these additional mechanisms are self sustaining in some way, that would explain how some patients get stuck in severe whereas others never get there, or vary between all 3 states over the course of years or decades.

 

[BrightCandle]

Excess Ammonia in the blood/body is my current pet theory.

Could be caused by a whole bunch of things, gut microbes produce it so if you have too many of certain types they can be the cause. Could be liver dysfunction or infection in clearing the ammonia from the body. Could also be the kidneys failing to excrete it due to a dysfunction or infection. In effect the symptoms of ME are just ammonia poisoning and PEM is the impact of all that nitrogen excess that exertion produces from the muscles and it clearing very slowly due to the overstress on ammonia already. Ammonia is meant not to be dangerous to humans but that assumes our ability to clear it is effective, otherwise it causes a lot of problems. It fits with everything so far, many would simply see heightened nitrates in their urine but not if it was a Kidney dysfunction and it would explain the tendency for liver stress results in urine and blood results.

It would explain the wide variety of differences too, it is really just the cause of body dysfunction but the reason underpinning it would still not be understood. Antivirals would work when its a liver or kidney viral infection, but they don't work in someone who has a gut microbiome pumping out more ammonia than the body can handle. You could have multiple heightened sources at once.

 

[Violeta]

Excess Ammonia in the blood/body is my current pet theory.

Could be caused by a whole bunch of things, gut microbes produce it so if you have too many of certain types they can be the cause. Could be liver dysfunction or infection in clearing the ammonia from the body. Could also be the kidneys failing to excrete it due to a dysfunction or infection. In effect the symptoms of ME are just ammonia poisoning and PEM is the impact of all that nitrogen excess that exertion produces from the muscles and it clearing very slowly due to the overstress on ammonia already. Ammonia is meant not to be dangerous to humans but that assumes our ability to clear it is effective, otherwise it causes a lot of problems. It fits with everything so far, many would simply see heightened nitrates in their urine but not if it was a Kidney dysfunction and it would explain the tendency for liver stress results in urine and blood results.

It would explain the wide variety of differences too, it is really just the cause of body dysfunction but the reason underpinning it would still not be understood. Antivirals would work when its a liver or kidney viral infection, but they don't work in someone who has a gut microbiome pumping out more ammonia than the body can handle. You could have multiple heightened sources at once.

Have you found any more information? I am currently focusing on ammonia, too.
I am cutting back on purines in my diet, but that can cause some uncomfortable symptom and even higher amounts of ammonia in the blood. Usually at this point of trying this method I stop, but this time I am going to try to press through.
I guess taking an herbal antiviral couldn't hurt and could help.
For the gut microbiome, I am going to take probiotics and resistant starch. If you have found that one probiotic is better than another, I would appreciate that information.

 

[hapl808]

The ammonia theory is compelling, but I haven't really found any of the 'solutions' for it particularly helpful so far. I haven't tried that much, though, other than dietary alterations and a few supplements.

 

[BrightCandle]

I Don't have much of a solution either. Hasd 3.2 seems to reduce it a bit as does LOLA, sodium benzoate and sydafed. This is mostly working on cellular production and disposal of it whereas it doesn't do much of anything for upstream cause and production. I have some hope microbiome adjustment may help but so far I haven't moved it very far that route.

 

[Rufous McKinney]

but I haven't really found any of the 'solutions' for it particularly helpful so far. I haven't tried that much, though, other than dietary alterations and a few supplements.

traditional chinese herbs can address some of these types of issues and some times help.

Generally, its tied to the Bulbous Lillii syndrome.

Its tied to restlessness, to insomnia.

but its tied to the Yin Deficiency, the huge issue ME CFS .

I"ve not been taking my main formula recently which contains this. I may resume soon. Took a break.

https://www.meandqi.com/herb-database/lily-bulb

You need a chinese herbal expert to put together a proper mix.

if you absolutely cannot find a good chinese herbalist, you could try the formula described in the link above (an existing mix of 10 herbs). Just realize something in there, might not be right for you specific circumstances. CTM is generally individualized medicine.

 

[Husband of]

Are you referring to Dr Igor Markov's chronic bacterial intoxication syndrome (CBIS) theory of ME/CFS, where he postulates that ME/CFS is caused by bacterial toxins entering the systemic bloodstream from a bacterial dysbiosis in the kidney?

I find Dr Markov's CBIS theory very interesting, especially since he also says that treating the kidney bacterial dysbiosis leads to a permanent cure of ME/CFS. His own clinic claims a 93% success rate in permanently curing ME/CFS by using autovaccines to treat the kidney dysbiosis. Unfortunately treatment takes time, 2 to 3 years for patients to reach full remission. Though he says you should see improvements within the first year.

One of the reasons I find the CBIS theory of ME/CFS intriguing and plausible is that at present, medical science has very little ability to detect bacteria toxins in the blood. For the most well-known bacterial toxin, lipopolysaccharide (LPS), there are now commercial lab tests which can measure blood levels.

But LPS is just one out of hundreds of different very pernicious toxins that bacteria will synthesis and secrete, and we do not have much in the way of blood tests which can detect these many other toxins.


So basically, as far as I am aware, medical science has a major blind spot when it comes to detecting bacterial toxins in the blood. So these toxins may have been present in ME/CFS patients all the while, but we have not developed the right blood tests to detect them.

Dr Markov was able to detect high levels of bacterial toxins in the blood of ME/CFS patients using a unique bacterial toxin test developed in the Ukraine. He finds without exception, all ME/CFS patients have these toxins in their blood.

These toxins Markov finds could be one in the same as the "something in the serum" that various ME/CFS researchers (Fluge & Mella, Ron Davis, Bhupesh Prusty) have found in ME/CFS blood, that negatively effects healthy cells in vitro, when those cells are exposed to a drop of ME/CFS patients' blood.

You might find this interesting if you haven’t seen it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3222156/
It is about how poliovirus requires bacteria, but it doesn’t have to be live because….
“ Moreover, poliovirus incubated with certain bacterial surface polysaccharides including lipopolysaccharide (LPS) and peptidoglycan (PG) had significantly enhanced yield over PBS-treated controls”
This is looking at replication in the gut of mice. But if you had a leaky gut, or perhaps if the bacterial coating or whatever it is were released via the kidneys, then a virus could bind to it somewhere not in the gut, even in the brain. Just thoughts. It would also presumably mean that if autovaccines are working it could be because they are making the virus replicate more by providing them the bacterial cells they want, but by doing so they are triggering a stronger immune response; or, actually they could make your virus situation worse, and therefore be a bad idea, or only work on sunsets who don’t have virus related issues. Or it could be a scam to make you sicker so you continue the treatment for longer.