ME/CFS "theory of everything" Etiology

[frozenborderline]

https://walkerstorz.com/me-cfs-etiology/

This isnt the final form of the theory. I have three substantial parts to add, and it will become even more big and unwieldy. But I think that its substantial enough that I may as well put it out there for now.

@Hip I referenced your dual factor theory. @JenB and @jeff_w I also referenced your theories.

I have more to say on NMDA upregulation, glutamate, glycine site NMDA antagonism, and what that has to do with the IDO metabolic trap/kynurenic acid--far more to say about that. I also have stuff to add about csf pressure, glial cells, and immunoglobulins of various types and their deficiencies and the balance of sorts btwn innate and adaptive immune system. But I don't have an assistant or anything and it hurts my neck to type more than a couple minutes, so I will have to unfortunately leave my unrefined theory here and do the refining only when i get the proper assistive technology, or someone to dictate my ideas to

 

[Boba]

so I will have to unfortunately leave my unrefined theory here and do the refining only when i get the proper assistive technology, or someone to dictate my ideas to

@frozenborderline
Can‘t you dictate them into your phone using speech to text? After that you could correct it on your computer. Less typing.

 

[frozenborderline]

Can‘t you dictate them into your phone using speech to text? After that you could correct it on your computer. Less typing

the speech to text programs on the cheap android phones i have are pretty crappy. and if you get into specialized terminology then id be hafving to manually correct over half the words which is a nightmare with my level of energy. Frankly i just need to find a way i can type on my back while looking upwards at a computer or tablet screen without putting any effort into flexing my neck or looking at all. its sort of hard tho and expensive to find good assistive technology like that

 

[Boba]

I‘m sorry man. Hope you find a solution soon. I‘m bedridden since 3 months myself due to covid... This is madness

 

[Hip]

https://walkerstorz.com/me-cfs-etiology/

Nice looking website. Clean minimalistic design.

 

[frozenborderline]

Nice looking website. Clean minimalistic design.

its really basic wordpress stuff but I did make sure the banner was a really nice picture of a beautiful place we've been in our mold avoidance travels, and I think/hope that makes some difference. Thank you, in any case. I know very little about web design, but am hoping to improve all of this.

 

[Reading_Steiner]

Doesn't seem to explain how me/cfs can take root in less than a week though does it ? I feel like if it was this obvious they would have focused in on this area by now.

 

[frozenborderline]

Doesn't seem to explain how me/cfs can take root in less than a week though does it ? I feel like if it was this obvious they would have focused in on this area by now.

I think it does explain that , sort of. Some parts are missing by any immune insult bad enough could cause inflammatory damage to ligaments as well as generalized inflammation overnight. Or slower. Just depending on the infection and or the environment

As to the idea that they would be focusing on it if it was correct, I have to disagree with that more vehemently. I have learned far more from collecting anecdata and observations from other patients or sometimes even autodidact patients that know some science , than I have from any published research in this disease ...I think researchers are by and large not focusing in the correct areas with a few exceptions

 

[Hip]

Doesn't seem to explain how me/cfs can take root in less than a week though does it ?

It could be that the CCI neck issue only starts to appear some months later, as a result of the viral infection weakening neck ligaments.

The initial ME/CFS might be purely viral, but then CCI might appear later, to further compound the condition.

 

[Rufous McKinney]

weakening neck ligaments

I experience a weird phenom that alot of my symptoms are worse on the right side of my body (lymphatic I suspect). And coincidentally, the liver is on that side (maybe the liver does receive lymph from both halves somehow). Sore swollen lymph nodes are on the right side only. More neuropathies on the right side.

And its the right side of my neck is full of "wind" at night. Popping over and over and over and over. The ligaments must be incredibly weak, but only on one side and I can;t for the life of me understand where all this wind. comes from (air, gases, literally).

I ask experts what is this popping and they say its- gasses.

 

[bensmith]

It could be that the CCI neck issue only starts to appear some months later, as a result of the viral infection weakening neck ligaments.

The initial ME/CFS might be purely viral, but then CCI might appear later, to further compound the condition.

This makes a lot of sense, and clearly was the case for jen and jeff and a few others on that facebook group.

Its too bas we sont have testing, because it seems like at least 10 percent of cfs people could be cured by cci surgeryzx. But we have no idea if knowing who they are. Even with traction response. Although that does seem to improve outcome odds.

There was a lady who posted yesterdya and seemed ro get nothing out of surgery. And she seemed to have done her homework before hand. Consults with all 3 i think. Its tough.

Sorry i cant comment on your work frozen, but good job.

 

[frozenborderline]

Its too bas we sont have testing, because it seems like at least 10 percent of cfs people could be cured by cci surgeryzx. But we have no idea if knowing who they are. Even with traction response. Although that does seem to improve outcome odds.

Agreed. Maybe asking for research into complex environmental phenomena, as I have, is too much, but cci studies, at least just 3establishing prevalence rather than anything ontreatment, would be quite easy and cheap compared to many types of studies,. Upright MRI, 600$/person. Then you have to use software to get the angles but it's still not rocket science.

 

[Perfson]

There are also lots of stories of recovery after FMT, which says how importart is gut health in ME/CFS. And a lot of people think it's one of most important factors, if not the most important. Though, i understand that it's not confirmed in any study yet, as far as i know.

I see that only gut motility issues are mentioned.

Curious if gut health is important only because it's important for connective tissue health. Collagen issue?

 

[frozenborderline]

see that only gut motility issues are mentioned.

I have trouble covering everything in a single etiology theory. If anything I feel my theory is overly large to accommodate too many things. But I do think that gut dysbiosis could be a symptom of outdoor and indoor air and soil and environmental dysbiosis. You understand?

 

[frozenborderline]

https://www.nature.com/articles/s41581-020-00357-4