ME/CFS "theory of everything"/etiology

[frozenborderline]

Here's a draft I'm working on regarding me/cfs etiology. Would love any feedback. It's not entirely novel, draws on theories by Jeff, jen brea , Erik Johnson, and @Hip

https://docs.google.com/document/d/1MnGJs4IzeFi44r_JkEgw5zUEiHF9CRsLCBT7t9umDKE/edit?usp=drivesdk

 

[suevu]

Here's a draft I'm working on regarding me/cfs etiology. Would love any feedback. It's not entirely novel, draws on theories by Jeff, jen brea , Erik Johnson, and @Hip

were is it?

 

[Wishful]

were is it?

It includes all that is really known about ME, therefore it's blank.


I've forgotten to include links in posts too.

 

[Rufous McKinney]

It includes all that is really known about ME, therefore it's blank.

It contains a footnote- see Brochure, yet to be drafted.

 

[frozenborderline]

were is it?

https://docs.google.com/document/d/1MnGJs4IzeFi44r_JkEgw5zUEiHF9CRsLCBT7t9umDKE/edit?usp=drivesdk

Here it is. Updated the post as well

 

[frozenborderline]

Here's basically the finished draft: https://docs.google.com/document/d/1fEfZMg90k0OW7ct3jDHYWwWpDg37nA8gCLjj9HCIX0s/edit?usp=drivesdk

 

[Davsey27]

Interesting Debrored what do you think of DNRS for these symptoms triggered by toxins?

 

[frozenborderline]

Interesting Debrored what do you think of DNRS for these symptoms triggered by toxins?

Totally worthless. Total quackery.

 

[Davsey27]

Totally worthless. Total quackery.

Interested there is a part of me that has wondered if this is a cult and then another part that has seen testimonials on YouTube and wonder if they are trying to program the mind in a way to react to the the Mcas/mold is this in line with Navieux's theory of trauma quieting the cell danger response mechanism

I ran into a woman who recovered in the bay area with doing lots of sauna and DNRS

 

[frozenborderline]

Interested there is a part of me that has wondered if this is a cult and then another part that has seen testimonials on YouTube and wonder if they are trying to program the mind in a way to react to the the Mcas/mold is this in line with Navieux's theory of trauma quieting the cell danger response mechanism

I ran into a woman who recovered in the bay area with doing lots of sauna and DNRS

This is a totally misread of cell danger response and naviauxs work. Cells in a dish react to "stressors" without having brains , DNrs wouldn't work for them

 

[Rufous McKinney]

Here's basically the finished draft: https://docs.google.com/document/d/1fEfZMg90k0OW7ct3jDHYWwWpDg37nA8gCLjj9HCIX0s/edit?usp=drivesdk

sorry I made some comments about your draft- on that other thread about Mold...got lost!

 

[Davsey27]

This is a totally misread of cell danger response and naviauxs work. Cells in a dish react to "stressors" without having brains , DNrs wouldn't work for them

I hear you Debrored

Seems like you are not taking the disability route and still managing

How do you get by my friend?

Still new to this stuff myself.I believe there are anecdotes of the limbic system stuff helping but others didnt respond.

It's hard to say.Maybe neuroplasticity works for some and not others.I know that some required cci surgery like Brea and this is probably evidence of a physical mechanism.200 bucks for a program seems pricey I dont know.

Positive thinking,visualizations,etc. may be good
I get temporarily relief from mast cell dampeners
Lorazapam,valium relatively low doses.May not be good long term but with Me nothing is guaranteed

As well as not ignoring science

Appreciate it Debrored

 

[Wishful]

Do abrupt periods of temporary remission (switching state from full ME to full health over a period of minutes) fit your theory?

I haven't noticed any neck/spinal issues. I expect that's a subgroup of ME, rather than a common issue with all PWME.

If toxins are a significant factor in ME, I'd expect more fluctuation with changes in the victim's environment. I've made drastic changes in my environment (moved from city to remote woods, major dietary changes) and not noticed a change in my ME, so I don't think a toxin is involved.

 

[sometexan84]

@debored13 Have you been tested for toxins?

 

[frozenborderline]

@debored13 Have you been tested for toxins?

I dont think there are any tests I would trust. Developing accurate assays for various environmental toxins and pollutants should certainly be a scientific priority

 

[frozenborderline]

Do abrupt periods of temporary remission (switching state from full ME to full health over a period of minutes) fit your theory?

I haven't noticed any neck/spinal issues. I expect that's a subgroup of ME, rather than a common issue with all PWME.

If toxins are a significant factor in ME, I'd expect more fluctuation with changes in the victim's environment. I've made drastic changes in my environment (moved from city to remote woods, major dietary changes) and not noticed a change in my ME, so I don't think a toxin is involved.

I will answer this more in full later. Not trying to avoid criticism but writing this crashed me a lot and my cci has gotten way worse recently , perhaps requiring emergency surgery , and so I have to pace myself with discussion.

As a quick note though, I'll say two things: 1) despite the title , I dont actually think any one theory can encompass every single person diagnosed with this disease, I wanted to be reasonably parsimonious and 2) issues like cci and brainstem inflammation from toxic exposure can manifest in relatively subtle ways.

 

[frozenborderline]

I appreciate the engagement and will give a more robust response later.

 

[Rufous McKinney]

(switching state from full ME to full health over a period of minutes)

I can continue to believe something called remission...exists.

But there could not possibly be a return to full health in minutes for some of us who- have been ill with versions of this for decades. My fingerprints do not- seem to reappear.

despite the title , I dont actually think any one theory can encompass every single person diagnosed with this disease, I wanted to be reasonably parsimonious

Just put Asterisk on Paragraph 1: exceptions will apply.

There is no sentence you can write about this that somebody won't indicate it does not apply to them.

And since we have no consistent diagnostics still, who does this apply to- is a moving target.

Its still worthwhile to ponder.

 

[frozenborderline]

My fingerprints do not- seem to reappear.

Did you know Paul Cheney reported that in his original Tahoe patients they lost their fingerprints? He did biopsy and find some inflammation and immune cells in the collagen I think.

I haven't had this but its interesting in terms of general collagen stuff

@JenB @jeff_w @Hip will try and find the fingerprints stuff

 

[Davsey27]

Debrored i like your ideas

The stuff you talk about mirrors some of Dr Klinghardts works in some ways.

There are clinics in Mexico if you can crowfund a few grand perhaps gets some treatment for mold,biotoxin,heavy metal detoxes

https://www.sanoviv.com/about-sanoviv/

Yeah I hear you on the cci and brainstem.Seems like
you have some objective clues towards elements that may be contributing and cause your ME.

Are you considering getting the CCI surgery?