Epidemiology and Environmental factors in ME/CFS

[frozenborderline]

Anything that doesn't involve throwing away all your clothes, your belongings and starting over completely from scratch.

A) Erik has never recommended throwing away all your stuff
... he recommended putting it in storage for a time , then reevaluating it after healing more. And by the way, the idea that contamination of stuff, not just active mold growth, could be a problem, Is discussed by some mainstream and respected mcas doctors like theoharides. Who brings up this point In the Anne Ortegren memorial lecture, that mycotoxins stick to stuff and cause mcas reactions.

@Gingergrrl actually had a remediation company measure /detect the mycotoxins on ber stuff if I recall, not just spore counts in the house. It's not just people in the extreme mold avoidance world that recognize that stuff can be contaminated by mold

B) you didnt answer the question and provide examples of modalities by which people totally recovered.

 

[frozenborderline]

We live in a bowl with constant cloudy skies that lock the pollution in. (GP's words)
Hills on one side, city on a hill the other side. But we are surrounded by heavy traffic, air traffic included. It might be me but I felt better during the lockdown earlier this year here in the U.K, perhaps because there was hardly any road traffic and all air traffic had ceased.

Now we are back to heavy road use and I feel worse for it. My ME/CFS aside, the sore throat and headaches from my chronic sinus issues are back. That cave on the hills 3 miles away is looking more and more favourable as we go back to 'Normal'.......

This is some good info and food for thought. The inversion phenomenon where low pressures trap pollution in a "bowl" is known about by mainstream science even if they dont go far enough in studying the nanoparticles etc. I heard that in parts of the UK using more diesel cars has caused worse air quality even while improving co2 emissions. I hope you find a solution

 

[dannybex]

As I've pointed out repeatedly this is basically a red herring for two reasons:
1). Shoemaker is not a proponent of "extreme mold avoidance ". He doesmt recognize outdoor toxins as a problem for the most part and has never recommended people camp in the desert or wilderness.

I was talking about his 'dreaded mold gene' claims.

2). While erik seems to respect parts of shoemakers work, neither he nor lisa petrison have said that this genetic claim is correct. In fact lisa petrison has said repeatedly she thinks shoemaker has never presented evidence for this claim. Erik has never said whether its correct or incorrect claim but has said that he told shoemaker he thinks the focus on genetic variation in responses is misguided.

Good for them.

I could not care less whether you personally believe in mold avoidance , but this is either ignorance or deliberate misrepresentation

Of course you care or you wouldn't have replied. But AGAIN, we'll have to agree to disagree. Doesn't mean I'm right or you're right -- or anyone's right -- just that we disagree.

 

[frozenborderline]

talking about his 'dreaded mold gene' claims.

If shoemaker has nothing to do with extreme mold avoidance or the reasons people do it, why is his mold gene claims relevant to the subject at hand ?

 

[dannybex]

If shoemaker has nothing to do with extreme mold avoidance or the reasons people do it, why is his mold gene claims relevant to the subject at hand ?

Because I was asked what specific things I disagree with, and that was one of them, because there's no science to back up his claim.

 

[jason30]

Sorry, not going down that rabbit hole again. I'm glad mold avoidance worked well for you, that's really great. Working a 40-hour week sounds like near recovered to me!

I just don't happen to agree with the 'Extreme Mold Avoidance' and especially the 'Locations Effect' protocols, but that's just my silly opinion.

Edited to add: As Valentijn discussed many, many times, years ago, Shoemaker's claim that 25% of the population has a 'dreaded' mold gene is flawed, not backed up by science.

Thanks Danny.

We can't process the toxins. For many of us there is no other way then to leave the house, many of us ended in a car and hotels. I ended many times in the hospital after being exposed to bad toxins. We don't have a choice other then avoiding the toxins. The extreme mold avoidance is not a protocol, it's a guide that helps mold avoiders to avoid toxins.

Shoemaker, a great guy who's giving us a name. For me personally, and I am just a simple guy, what is the added value of this test? I guess someone can use the result for telling their doctor, family etc. about it, but the test on itself doesn't change anything. We already know that we can't process the toxins, we don't need a test to define that we can't process them. You now see the danger of this test by the people who have taken this test, and now say that all their problems with the toxins is because of that gene. They don't look further into methylation, heavy metals etc, which is in my opinion a missed opportunity. So to be honest, I discourage people to take that test.

Location effect? For me it's all about the toxins, I once lived next to a big lake with blue-green algae. There were toxins in the air. I had the same reaction to these toxins as mold toxins. I react in the same way to pesticides used in agriculture. It seems that both pesticides and (mold) toxins are processed by liver phase 2 methylation pad and glutathione.

 

[Sledgehammer]

This is some good info and food for thought. The inversion phenomenon where low pressures trap pollution in a "bowl" is known about by mainstream science even if they dont go far enough in studying the nanoparticles etc. I heard that in parts of the UK using more diesel cars has caused worse air quality even while improving co2 emissions. I hope you find a solution

Our only solution is to cease, or at least cull the huge amount of both road and air traffic where I live.
Seeing roads narrowed along with more and more bike lanes created locally might be a sign of hope for some sufferers. For me at least this can't come soon enough.

Yes diesel cars have caused huge pollution issues here. But if it wasn't for VW having their cheat system exposed I dare say the problem would have only gotten worse. More lawsuits are on the horizon but it'll take time. Too little to late for many who have been victims of pollution.

I'll add that I spent 4 weeks on West coast Australia back in 2018.
My sinus problems got better, I actually though I might be cured.
Once back in ther U.K it got worse and has never let up since.

 

[frozenborderline]

https://www.ncbi.nlm.nih.gov/pmc/ar...cognitive impairment, and emotional disorders.
This is interesting. Suggests China may have a higher rate of me/cfs . Unless they're measuring wrong ... this is a pretty huge amount
"The incidence rate of CFS in China is up to 5.58%. Although fatigue is the main manifestation of patients, most patients with CFS have non-restorative sleep disorders, and some patients have musculoskeletal pain, neurocognitive impairment, and emotional disorders."

 

[ruben]

I would have also thought IBS should definitely be included too.

 

[frozenborderline]

I would have also thought IBS should definitely be included too.

Included in what? I have seen studies showing rapid increase in IBS especially among children in past 30 years... even or especially in developed countries.

 

[ruben]

I was referring to the post immediately above mine. Apologies.