ME is not mould intolerance; mould intolerance is not ME

[frozenborderline]

I wish the theory was true, believe me. I sometimes wonder if it applies to me as well, given that I start feeling very bad when I don't leave the house for more than a week.

However, there doesn't seem to be much scientific evidence supporting it.

If it there is indeed such evidence, why haven't researches made human experiments testing the theory? A simple example: take a group of patients, put one half in a moldy building, the other in a very clean zero-mold building, let them live there for a month or two and then see if the no-mold group improves? That can't be that difficult can it?

Surely, if is there is good evidence, even if not scientific, researchers would jump in and do tests to see if it holds up. Take for example the CCI hypothesis. It started gaining traction less than 2 years ago and there's already researchers planning experiments that will put it to the test.

I dont think "if there was something to the theory, researchers would look into it " is a good metric. There are many theories researchers in me/cfs have looked into and tried to find replicable evidence for for years and years that have not borne fruit.

It's just not a good criteria. Researchers are influenced by dogma and ideology just like anyone else. The theory deserves to stand on it's own merits. And if there is such a large contingent of patients begging for research into environmental factors, they deserve to be heard.

 

[niall]

I have been on a detox protocol for the past six months and have noticed a reduction in my overall pain level and an increased ability to tolerate sustained activity. I am taking coconut charcoal capsules twice a day and liposomal glutathione 5cc twice a day. Dr. Rey and Dr. Klimas told me that it can take up to two years for the detoxification to be completed. Even if you can't move out of a mold environment, the detoxification process will pull the mycotoxins out of your body faster than you are breathing them in so you will still get better. It will just take more time.

 

[perrier]

I have been on a detox protocol for the past six months and have noticed a reduction in my overall pain level and an increased ability to tolerate sustained activity. I am taking coconut charcoal capsules twice a day and liposomal glutathione 5cc twice a day. Dr. Rey and Dr. Klimas told me that it can take up to two years for the detoxification to be completed. Even if you can't move out of a mold environment, the detoxification process will pull the mycotoxins out of your body faster than you are breathing them in so you will still get better. It will just take more time.

What are coconut charcoal capsules? Thanks

 

[Rufous McKinney]

What are coconut charcoal capsules? Thanks

How do you decide when to take the charcoal?

Doesn't it just absorb whatever is the first liquid solution it meets up with? (like the stomach)...

Curious how you deploy it.

 

[Artemisia]

I have been on a detox protocol for the past six months and have noticed a reduction in my overall pain level and an increased ability to tolerate sustained activity. I am taking coconut charcoal capsules twice a day and liposomal glutathione 5cc twice a day. Dr. Rey and Dr. Klimas told me that it can take up to two years for the detoxification to be completed. Even if you can't move out of a mold environment, the detoxification process will pull the mycotoxins out of your body faster than you are breathing them in so you will still get better. It will just take more time.

I'm also very curious about your protocol. Would you mind sharing the brand of the charcoal and gluatathione, and how many charcoal capsules you take per dose? Thanks.

 

[lagarto]

If someone's ME-like symptoms are relieved by mould avoidance, then they don't have ME, they have mould intolerance.

If symptoms can be made worse by mould, why wouldn't they be relieved by mould avoidance? It seems logical that they would, for the patients whose symptoms were worsened by it.

 

[frozenborderline]

Here's a theory that includes mold as well as hips dual factor theory and structural issues https://docs.google.com/document/d/1fEfZMg90k0OW7ct3jDHYWwWpDg37nA8gCLjj9HCIX0s/edit?usp=drivesdk

 

[Rufous McKinney]

Here's a theory that includes mold as well as hips dual factor theory and structural issues https://docs.google.com/document/d/1fEfZMg90k0OW7ct3jDHYWwWpDg37nA8gCLjj9HCIX0s/edit?usp=drivesdk

In Utero: I really liked that concept your starting with.

I need to figure out more about- what was going on at this stage.

So I had spine structural problems evident as a toddler. Multiple types of structural problems..all viewed as mild. (lordosis, mild scoliosis, probably the german defect as well).

Admirably flexible as well.

My parents are now gone, but perhaps my older brother can help me- figure out the timelie of where was I actually conceived.

I feel I was got by organophosphates....later. But pinning down an earlier exposure would be- interesting if only theoretical.

Meanwhile: imagine we stopped using these chemicals. Wouldn't that be a nice day.

 

[Rufous McKinney]

Here's a theory that includes mold as well as hips dual factor theory and structural issues https://docs.google.com/document/d/1fEfZMg90k0OW7ct3jDHYWwWpDg37nA8gCLjj9HCIX0s/edit?usp=drivesdk

I think we have some at least anecdotal evidence that over time collagen degradation is taking place or some other type of protein degradation- and this may contribute to brain stem collapse.

I think this is the other way we may converge with: lower brainstem issues.

 

[Rufous McKinney]

Here's a theory that includes mold as well as hips dual factor theory and structural issues https://docs.google.com/document/d/1fEfZMg90k0OW7ct3jDHYWwWpDg37nA8gCLjj9HCIX0s/edit?usp=drivesdk

At 67 years of age here: all my ligaments are extremely weak. If I assume that the ligaments holding, for instance, my Brainstem, and my bladder, are similar to my wrists, knees, hips etc., the body is poorly held together.

Fingerprints gone here.

Parts of the body that seem to include more collagen tissue- are compromised.

I suspect a lack of sci references on this general condition, sadly.

 

[frozenborderline]

Here's a rough transcription :

I used a software to do a rough transcription of this:

Open Letter to the Open Medicine Foundation:

"My name is Walker storz, and um, I'm a severe ME/CFS patient. Um, and I wanted to make this video to the OMF about trying to get across the severity of the situation of the environmental component and why I really feel like we need, Um, despite the great work, you're already doing, you guys to step up and really strongly look into this environmental component.

Uh, and let me try and tell my story, you know, succinctly. Um. I got Lyme while also living in a moldy house, which I didn't know at the time. It was moldy. In 2016 I sort of gradually deteriorated until I ended up being bedridden. In that time, I got the diagnoses of ME/CFS from Susan Levine, um, pots, um, MCA S and eventually.

I started having these new symptoms and I got diagnosed with CCI, which as you guys know, um, means my brain STEM is being compressed because my ligaments, her legs, I have no hereditary connective tissue disorder. I've never had head trauma. And so my strong feeling is that the mold, which I think is short hand for environmental.

You know, bad stuff that we notice we're affected by is what caused this. Um, and I was experiencing episodes of like total paralysis, being unable to speak, um, or move in my house in Vermont. Um, and my sister took me across the country in the back of a van horizontal because of the CCI, because it could not have had handled train travel and did months of just like camping, which is kind of insane to do when you're this severe, but we didn't have the money for an RV or to just indefinitely stay in hotels and Airbnbs.

And the improvements are slow. I don't think it's going to heal my CCI, but at home I was, you know, raising my heart rate to like insane levels, just crawling to the bathroom and back in death Valley. Um, two or three weeks ago, I walked the length of a football field and back without my heart rate breaking 100 and now I'm here and I'm near Taos, New Mexico. Questa and what I just said might sound like, you know, a total success story, but you know, this lifestyle is, it's insane. I don't think we can keep it up. And yet it's one of the only things that has helped us. So that's why we desperately, desperately need researchers to look into the environmental aspect of like the location's effect on our health.

And my story is not uncommon. And the connection to CCI shows that this is not a zero sum thing. This is, um. You know, they might be really deeply intertwined. Um, there's studies that show mycotoxins and mast cell activation can degrade collagen. Um, so I'm just, I'm not sure if we can keep doing this lifestyle, even though it's the only thing that has helped me with our financial resources.

It's, it's totally cold here. Um. We had bad luck in this. Um, Airbnb actually isn't good. It's moldy. Um, and there are just so many things about this lifestyle that are really difficult. I caught some kind of bug. Um, and, uh, that makes things harder. So I've dipped down a little since the improvement I talked about.

Um, so in short, I think that. Unless someone looks into the whatever environmental aspect to this disease there is. Um, and like the epidemiology, including like the cluster outbreaks and how they were geographically contained within certain areas. Until someone does that, I think people are going to die.

They're going to not be able to do this lifestyle. I wouldn't consider myself lucky because we don't have the financial resources for like an RV or something, but I'm still luckier than a lot of people in that I had a caregiver willing to drive me across the country. Um. So please look into this, or people will die.

That's basically my message and that sounds aggressive, but, um, you know, I'm out here shivering and Taos, and I'd rather just, you know. Have a cure for this component of the illness. Um, even though it's beautiful, as you can see, um, this isn't about sight seeing. It's about survival. And, uh, thank you very much."

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Apr 24, 2020
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Transcription of the video entitled "what if I'm right"

transcription of another one:
"what if I'm right"

"This one is really short because I'm really worn out after I'm doing these other videos, um, and feeling pretty awful. But, um, I wanted to try and be really succinct in getting across, um, an urgent message about looking into environmental factors in ME/ CFS. And so I want to say to ME/ CFS researchers
what I, um, said to my parents when I was arguing with them about this, um, about us being maybe canaries in the coal mine for, um, or sentinels for, um, environmental changes, environmental, bad environmental changes. Um, um, maybe first in line for a human extinction. And what I said to them, um, and what I think is a really simple message is, what if I'm right?

You know, you don't have to assume I'm right, but what if I am right. That this is happening and you're not doing anything about it. I mean, like, if there are nonlinear cascading environmental effects that I'm like, Erik Johnson has suggested, make mold way more pathogenic, but also maybe make it more prevalent.

Um, just make the biome more messed up. Um, and we're canaries for that. And then let's step back and not just assume its mold, but that there's something [known unknown] in the environment that we're sensitive to that's devastating. Us and ME/ CFS patients are canaries for it, or are the first test subjects or, um, the first humans to go extinct maybe.

Um. What's the worst case scenario, if I'm right and you don't look into it, and then what's the worst case scenario, if I'm wrong, and you dont look into it? Um, I think the worst case scenario, if I'm right and I don't want to be right, is that this problem will grow exponentially, and that. Lots of people won't be able to be in a healthy environment and, um, won't be able to do all this stuff, and they'll die.

They'll kill themselves. They'll get so sick that they cannot be moved. Um, and if I'm wrong, I'm really happy to be wrong. And if it's, if it's all genetic, and if some like niche gene therapy cures all of this, and if there's nothing going wrong in the environment that's causing this disease, I'm happy to lose that bet.

But right now, I'm really betting that I'm right and I want you to think about what if I'm right."

 

[Davsey27]

Curious debrored if you found activated charcoal to be helpful?

 

[Aidan Walsh]

I dont think "if there was something to the theory, researchers would look into it " is a good metric. There are many theories researchers in me/cfs have looked into and tried to find replicable evidence for for years and years that have not borne fruit.

It's just not a good criteria. Researchers are influenced by dogma and ideology just like anyone else. The theory deserves to stand on it's own merits. And if there is such a large contingent of patients begging for research into environmental factors, they deserve to be heard.

 

[Aidan Walsh]

The National CFIDS Foundation has been involved in only Radiation Sickness & McMaster University has tested patients for it & are positive. It is not Mold 100%

 

[frozenborderline]

Thanks for quoting me, I quite agree with myself

 

[frozenborderline]

The National CFIDS Foundation has been involved in only Radiation Sickness & McMaster University has tested patients for it & are positive. It is not Mold 100%

nobody has tested anything in cfs enough to rule out anything really. When we get five hundred million in funding that will change

 

[Aidan Walsh]

nobody has tested anything in cfs enough to rule out anything really. When we get five hundred million in funding that will change

The tests done were Government testing for internal ionisation radiation

 

[lenora]

Again, I think it comes down to the immune system itself and what it can withstand. Molds have been with us forever, as have fungi, but I think we can feel the effects of both much faster than the average person.

In TX, especially along the gulf, we had numerous cases of black mold and it was taken very seriously b/c these people became quite ill. Should that be included in a diagnosis of CFS/ME? I'll leave that to the experts to debate, but I certainly wouldn't enter any building that has these problems.

Even new homes can be affected if there something like a leak in the roof (which often happens during construction) although the chances seem to be less. One of the reasons we don't move...we know exactly what to expect of the house we're in and I'm sure other people feel the same.

Yours, Lenora.

 

[frozenborderline]

Again, I think it comes down to the immune system itself and what it can withstand. Molds have been with us forever, as have fungi, but I think we can feel the effects of both much faster than the average person.

Molds have changed a lot too. We don't really know when we react to stuff in the air what we react to. Some recent studies showed that mold spores at construction sites collect nanoparticles on the Tips , this making them mire pathogenic and inflammatory. Similarly, a cyanobacteria that kills Eagles doesn't make the cyanotoxin in a lab environment, it requires bromides which come from pollution to make its toxin. Recent article on this in my backlog of posts.

The microbiome of the outdoor world and indoors is changing. Pollution is changing . complex and unpredictable second and third order effects may happen when things like molds interact with pollution. We are putting g so many novel chemicals in the world that we have no idea how safe they are in a sterile lab, let alone when they join toxic slurry of other pollutants , or get broken down by microbes. Its all very complicated and hard to say what's going on without further study

Regardless mold has never been "great" for you.,. But we haven't always had these chemical pollutants , nor habe we always lived in poorly ventilated drywall houses that are located sometimes in high population /car density exurbs, suburbs and cities . not that those are the only problems but just to put "mold" in perspective. A forest mold in a remote pristine location may have a different health effect than what's growing in the drywall in the house in the suburbs of Pittsburgh or Palo alto or Denver.

 

[frozenborderline]

In Utero: I really liked that concept your starting with.

I need to figure out more about- what was going on at this stage.

So I had spine structural problems evident as a toddler. Multiple types of structural problems..all viewed as mild. (lordosis, mild scoliosis, probably the german defect as well).

Admirably flexible as well.

My parents are now gone, but perhaps my older brother can help me- figure out the timelie of where was I actually conceived.

I feel I was got by organophosphates....later. But pinning down an earlier exposure would be- interesting if only theoretical.

Meanwhile: imagine we stopped using these chemicals. Wouldn't that be a nice day.

if we stopped , simply stopped, systems would correct themselves. We could even speed it up with using plants and mushrooms for remediation, and binders and chelators. It'll probably never happen but If there's any good news on that front wake me up from my planned long nap and tell me about it