Open letter to the OMF--help save us canaries

debored13

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Made this video which id like to get to people at the Open Medicine Foundation and maybe other researchers as well.

As a side note, I find the thumbnail deeply unflattering and want tech support to know if I can edit the thumbnail from mobile
Please watch and share as widely as possible if you agree with me on this issue.
 

Wolfcub

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You are likely on to something when you mention the environmental aspect of cluster out breaks of ME/CFS. That makes a good deal of sense actually.; that some environmental toxin or mycotoxin is involved.

And when we think about it there are very few mould-free places in the world which would be accessible to people, whether sick or well ! (and even less so for people who are sick with limited financial resources.)

Thanks for this video @debored13 Thank you for using your precious energy to produce it, and I hope if it is widely shared it will get some real attention.

I hope you are managing....or at least doing okay-ish? Take care and my kind thoughts to you :hug:
 
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Heres a follow-up.

My vote: is Your Right.

Ignoring the environmental trigger component of this illness is a bad plan.

Assuming micro-organisms don't evolve, is a bad idea.

Believing you can dump toxic chemicals all over the environment, and then ignore health consequences, is simply lame. Add electromagnetic pollution.

The toxins, environmental connection got noticed, up there at Lake Tahoe. And they packed their bags.

We continue to allow horrific chemicals to be released throughout our environment.

I worked on toxic cleanups (planning them, not doing them). There are repercussions for Better Living Through Chemistry.
 

debored13

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Btw, @Hip , One interesting aspect of the dual factor theory is the observation that the infectious aspect could make one perpetually more sensitive to the enviromental aspect. I don't know exactly why this happens but in my case I had signs of mild cirs before getting a fairly straightforward, acute case of Lyme, and then without knowing it I became more reactive to mold. Erik reported that those in Tahoe who both lived in mold and got the Tahoe flu, were both the ones who became sickest and also the ones who were most reactive to mold afterwards. Whereas those who had a single exposure without infection often didn't develop full blown me/cfs and could get by with less intense forms of avoidance. Lisa Petrison said that she thinks that this accounts for why many me/cfs patients, especially the most severe , need stricter more intense forms of mold avoidance than standard cirs patients, and don't get better on the shoemaker protocol. Food for thought , and relevant to my point in the video about this not being a zero sum game research wise.
 

Hip

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One interesting aspect of the dual factor theory is the observation that the infectious aspect could make one perpetually more sensitive to the enviromental aspect.
I think that's quite possible.

I've recently been pondering over the Japanese study which found that in vaccine-triggered ME/CFS-like illnesses, there was chronic inflammation in the nasopharynx.

The nasopharynx, even under normal circumstances, contains a high concentration of immune cells. When there is chronic nasopharynx inflammation, these cells are then exposed to inflammatory factors and cytokines, and the theory is this localized inflammation's effect on the immune cells may then have body-wide immune repercussions, like the development of autoimmunity.

So maybe likewise, the presence of mold in say the nasal cavities might cause local inflammation which might have global immune repercussions.
 
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debored13

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That makes sense from an evolutionary perspective --nostrils are one of the first line entry points for both inhaled toxins and infectious microbes. I wonder if those most sensitive to mold have a heightened immune response in that area --somwthing tbat would have been helpful at one point in time but no longer is
 

debored13

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I was just rereading my PDF of Erik on avoidance , which I recommend for people to skim even if they aren't interested in pursuing mold avoidance, because it emphasizes so much how hard this lifestyle is to pull off, to the extent that Erik says he doesn't even really recommend it to people as much as he wants researchers to look into it.

It's not about moving homes or moving to the desert, its about an insane level of counterintuitive, dynamic approach to avoiding ans sensing small amounts of "the bad stuff". And Erik makes it look deceptively easy.

He had to build a custom all metal trailer to really make rhe lifestyle work. Its almost too hard to do in a tent and very hard to keep conventional housing good
 

debored13

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"After being forced out of several homes by plumes that blew in from elsewhere, I lost interest in having a fixed-base, unless I could really make sure that it was out in the middle of the Godforsaken desert. And even then, I would definitely want a mobile Plan B backup. I need a MECU for travel, anyway. -Erik (2010) * When I was crawling on the floor and barely getting enough energy to stand up for a few minutes at a time, I realized that if I were to completely collapse, most likely I would be found and taken to a hospital where they would pump me full of drugs, not believing or understanding when I ask to be taken to the desert. At the time it seemed that if I did not make it out there while I still could, my only option was suicide. This is why I spent all these years showing my Mobile Environmental Control Unit to researchers, explaining that making something like this available would be a Godsend that could pull people back from a very low place. -Erik (2015) * >What kind of home is best? A mobile one. Because you never know when the shit might hit the fan at your neighbors’ house. -Erik (2015) "
 

gbells

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@debored13 I'm curious. You state that you have CCI following ME. Do you have any other symptoms of ligament laxity? Personally, I don't have CCI but my thumbs now retroflex (bend backwards) and stay in a retroflexed position where previously they were in a normal aligned neutral position. It is much harder to bring them into full flexion.
 

debored13

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@debored13 I'm curious. You state that you have CCI following ME. Do you have any other symptoms of ligament laxity? Personally, I don't have CCI but my thumbs now retroflex (bend backwards) and stay in a retroflexed position where previously they were in a normal aligned neutral position. It is much harder to bring them into full flexion.
I have long slender fingers and ectomorph build w slight pectus excavatum, tall skinny and double jointed thumbs. Which sounds a little like marfans. But i don't think i fully meet any criteria for connective tissue disorders. The only pathological area seems to be my ccj.

Btw @jeff_w wondering if you think what i said sounds at all like marfans and if you have any ideas on testing for marfans and good doctors to do it...would dr b refer me?
 

debored13

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Erik said that he would like to see money spent by me/cfs institutes making safe metal trailers for people to detox in the desert with. I also think that this could be a worthy cause. It could even be cheaper than conventional housing. PwME have died because of inability to do all of this stuff. The answer to "mold avoidance is too hard resource wise for severe ME patients " should be " let's study and treat rhis using institutional resources" not "well that's a good reason not to study it".
 

debored13

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Regardless of whether your house is good, if a source point gets going upwind of you, whatever you do in your house doesn't matter. I never wanted to be trapped again without an escape route. That's why I bang away so hard on the need for an MECU. Nobody would think to plan for this. Nobody says to themselves, "I really need a camper, or some place I can move if my whole neighborhood goes bad.” The lucky ones are those who already have an RV. Hopefully it wasn't too badly contaminated, but very likely it is. After it's happened and people have gone the rounds of doctors who found nothing, and after they spent all their money trying to remediate their house when it was the whole area that put them under the power curve..... What are they going to do if they have no MECU? Well, I can tell you. They just go from hotel room to hotel room, from house to house, trying again and again to find a safe place to sleep. People who haven't gone through this yet have no idea how much they need one, if they are headed towards this kind of reactivity. The only people who can advise them in advance are those who have gone through it. -Erik (2008)
 
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I have long slender fingers and ectomorph build w slight pectus excavatum, tall skinny and double jointed thumbs. Which sounds a little like marfans. But i don't think i fully meet any criteria for connective tissue disorders. The only pathological area seems to be my ccj.

Btw @jeff_w wondering if you think what i said sounds at all like marfans and if you have any ideas on testing for marfans and good doctors to do it...would dr b refer me?
A cardiologist or genetic specialist can evaluate you for Marfan. Internists usually aren't familiar with it.