Epidemiology and Environmental factors in ME/CFS

[dannybex]

Just saw your latest reply. I don't think it would be fair to their families to name names in a public setting.

Again, I think you're reading waaaay too much into what I've actually said. Just as an example, nowhere did I say that Erik 'claims avoidance can cure everyone'.

All I'm doing is saying I disagree with the "Extreme Mold Avoidance" protocol because I've seen, read, heard, and known of people who committed suicide, and known people who were much worse off after doing the protocol -- who developed severe MCS as mention above. I don't know of any other protocol where that specifically has happened. Maybe it has with other ones, but I'm not aware of it.

And if you disagree with me, that's great.

 

[frozenborderline]

Please point out specifically where I claimed that cities are 'perfectly safe' to live in, and also where I suggested that anyone who disagrees with me is delusional.

You said that mold avoiders have a "false notion" that entire cities are "unsafe."

First of all, if any mold avoiders states that it seems to be a didactic oversimplification. Erik makes a huge deal of pointing out that If one becomes sensitive enough they can navigate almost any city, even the ones that have majority bad air. He makes a big deal of.going to areas that others wouldn't. If anybody states a whole city is bad it's probably shorthand for it being bad enough over a large enough area that it is difficult to navigate for a beginning mold avoiders. While its doubtful that any city or state is entirely bad in the literal sense there are some that are way way worse and some that are way way better, and the latter are better for beginners.

Secondly, its recognized by conventional science that entire cities can have air pollution consistently bad enough to be "unsafe" in that it is "unsafe for sensitive groups" . If you have asthma or copd or heart disease I'm pretty sure that no doctor would think it's safe to live in Beijing or mumbai or New Delhi. What we are doing is asking for a level of study of air quality beyond PM 2.5 and ozone which is basically all that's studied now. We want nanoparticles (which are smaller than pm 2.5) to be studied, mold spores and mycotoxins and vocs, and mold spores with absorbed nanoparticles (which is something I discuss in a thread here in detail, that the science shows is plausible cause of inflammation) . Nanoparticles and ultrafine particles are an inevitable result of industry at our scale and we barely measure them, yet we know that larger fine particles cause all of these diseases. It would follow that nanoparticles would be even worse, bc studies show they can cross the bbb, and lodge themselves deeper into the lungs and many organs. Yet no air quality measurements measure them

Here are some articles that I think validate the idea that further study is needed in these areas:
https://www.euronews.com/2019/02/04/measuring-nano-pollution-from-cars

https://www.sciencemag.org/news/202...ng-us-national-parks-more-1000-tons-each-year

https://www.pnas.org/content/115/27/7087

The last article is particularly robust but I also find the second one, on microlastics in natl parks , very troubling. One of the interesting things is a quote from one of those scientists talking about secondary effects on the soil microbiome, which we almost never focus on with pollution studies... the possible ecological cascades caused by novel chemicals that can change the outdoor microbiomes. As Robert naviaux, one of the most respected (for good reason) me/cfs scientists has noted, we have seen an across the board rise in chronic illnesses in the same time frame that thousands of novel chemicals have been introduced , and yet we barely study ecological impacts on chronic disease at all. And we have an EpA that rather than apply the precautionary principle , lets industries that create novel chemicals self regulate in terms of disclosure of any harmful effects. That is, novel chemicals are considered "innocent until guilty " and the companies that stand to lose the most from regulation are counted on to disclose any harmful effects. So from those facts I don't see how the additional knowledge that many people have reported environmental effects on their me/cfs symptoms would come as any surprise or be outlandish. Not that anecdote is proof enough for anything more than further study, but that's all we want... further study.

 

[frozenborderline]

Just saw your latest reply. I don't think it would be fair to their families to name names in a public setting.

It's fine if that's the case, but if that's the case than you shouldn't bring them up at all. One could in bad faith say that to discredit any treatment. I know that people like Henrik vogt and wessely often blame the biomedical me/cfs paradigm for me/cfs patient suicides. They say that the (patently correct ) idea that me/cfs doesn't have a known, fda approved cure causes too much despair and the patients commit suicide bc of that. If you can't show a strong causal link and specific peoppe that were harmed in a specific way by 4his protocol then I'm afraid you're doing 5he same thing.

 

[frozenborderline]

ause I've seen, read, heard, and known of people who committed suicide, and known people who were much worse off after doing the protocol -- who developed severe MCS as mention above. I don't know of any other protocol where that specifically has happened. Maybe it has with other ones, but I'm not aware of it.

I'm aware of so so many people that developed mcs from inaction , or from constant exposure to mold , and also aware 9f so many patients doing medical treatments that committed suicide that I'll be charitable and assume you're solely talking about specific treatments worsening mcs? I'm not sure that I know of any. But I know of ppl spontaneously developing mcs just from living in molds or fir "no reason" and I'm also aware of plenty of side 2effects up to and including death from basically every treatment for me/cfs, including ones given by the most recommended doctors on this board.

 

[dannybex]

@

You said that mold avoiders have a "false notion" that entire cities are "unsafe."

First of all, if any mold avoiders states that it seems to be a didactic oversimplification.

EXACTLY. We actually agree on something.

But that's exactly what the 'Locations Effect' hypothesis implied, which is why I was/am so critical of it. People would randomly log into Petrison's page, and say 'I felt bad in this' (neighborhood, street, corner, city) and she'd record it as a result of some toxin when we don't know what was causing it. That's why I called it a false notion. It MAY have been true in some cases, but it may not. But they, or Petrison, just assumed it was due to mold, mycotoxins, etc.. I think she used to even call it 'the ick'.

Her map of so-called bad locations takes up basically 2/3rds to 3/4ths of the country. Yet only 1-2% of the population has ME/CFS.

https://www.zeemaps.com/view?group=3586321&x=-101.031195&y=40.197072&z=13

 

[frozenborderline]

@


EXACTLY. We actually agree on something.

But that's exactly what the 'Locations Effect' hypothesis implied, which is why I was/am so critical of it. People would randomly log into Petrison's page, and say 'I felt bad in this' (neighborhood, street, corner, city) and she'd record it as a result of some toxin when we don't know what was causing it. That's why I called it a false notion. It MAY have been true in some cases, but it may not. But they, or Petrison, just assumed it was due to mold, mycotoxins, etc.. I think she used to even call it 'the ick'.

Her map of so-called bad locations takes up basically 2/3rds to 3/4ths of the country. Yet only 1-2% of the population has ME/CFS.

https://www.zeemaps.com/view?group=3586321&x=-101.031195&y=40.197072&z=13

And yet, lisa petrison has stated that she doesn't think this map is reliable enough to use for avoidance and that she thinks its just interesting and important (as part of a larger scheme) data to report.

She has also stated that she doesn't know the exact chemical composition of any of the toxins causing this illness although she has hypotheses. That is a long way from the strawman you presented.

I don't think its harmful to work on imperfect, anecdotal epidemiological projects like a map of self reported health In various locations bc of the idea that it could upset someone. Any more than I think its wrong for @Hip to collect survey data on people that have self reported recoveries for surgeries , or if they took corticosteroids at onset.

Also I'm not sure that we really agree bc I don't think a "didactic oversimplification " is necessarily harmful. Let's just assume the hypothesis IS correct. You could then tell people either "Tucson is mostly bad" or "there are almost certainly a few blocks here and there or square feet with good air in Tucson vut I don't know where to find them". The former, assuming the mold hypothesis was true, would almost certainly be clearer and more helpful to someone who is stuck , than the latter, even if its na oversimplification. Almost every heuristic or teaching tool is based on oversimplification

 

[frozenborderline]

Also, if scientists did any epidemiological mapping , which they point blank have refused to do when I asked , then the flawed types of informal studies we are discussing here wouldn't need to be done. But they are a good starting point for what julie rehmyer has described as "citizen science "

 

[frozenborderline]

But I don't think just any old toxin can act as a risk factor for ME/CFS. I suspect that for this dual-factor causality, it would require a virus plus a specific sort of toxin or substance that will suppress the antiviral immune response, which then allows the virus to run riot in the body, and infect critical organs like the brain which it might not normally breach into.

Just as a devil's advocate thing: regular old pm 2.5 seems to have been noted as a risk factor for covid infections so I imagine it could make any viral illness worse. That said I agree we are looking for something more specific than regular particulate pollution. I do think nanoparticles are something to look for. We normally don't. And then mycotoxins combined with nanoparticles could have same effect as when nanoparticles are combined with a drug for increased bbb crossing effects. Amplifying the effects of the mycotoxin. Anyway , I might think its mold/nanoparticles and someone else might think its pesticides and I think the way to hash out those differences is to cast an extremely wide net.

@frozenborderline All I can say is you're completely missing my points, and since I've tried three times to clarify what I said, and you still don't understand where I'm coming from, then I'm not sure how else to say it, except that I agree with you that environmental toxins and pollutants can definitely play a role.

Anyway, if you can't accept my apology, then I guess you can't. Seems like no matter what I say, you won't believe me, so I'll bow out of the conversation and wish you the best.

I think my feeling of upset is due to the level of ease with which you use certain labels , and descriptors, when discussing a theory, basically either explicitly or implicitly making it sound radical or extreme. And furthermore the suicide claim. That's quite serious. I engage in scientific criticism of people in the mold avoidance community often , for example finding gaps in theory or pracrice they have not necessarily addressed (like how mold avoidance usually doesn't heal cci), but accusing them of being the cause of a suicide is very serious. I imagine people would be upset if I said that without naming names or showing proof about respected doctor or researcher , like ron Davis or dr Kaufman.
I think that's the most offensive thing in your post and were you to either show proof or retract it , I would be very willing to accept an apology.

Anyway , let's entertain the idea that erik is right, for a second, and furthermore these toxins did damage my ligam2nts so much I needed surgery, but I couldn't get that treatment and died of the same cause these others did. Would all of the doctors and researchers that have ignored patient calls to look into environmental factors be responsible ? Maybe they should be, but I doubt they'd be held accountable and if one posted that on a board like this it might be very divisive.

My point is , I hold the same level of respect for patient researchers and citizen scientists that I do for MD Phds working on this problem and so I think it should be taken just as seriously to claim that they caused a suicide as if someone did with a doctor or researcher

 

[frozenborderline]

Meanwhile, many others have improved or recovered from mold issues without resorting to these extreme measures.

And still no proof for this statement.

 

[dannybex]

I think my feeling of upset is due to the level of ease with which you use certain labels , and descriptors, when discussing a theory, basically either explicitly or implicitly making it sound radical or extreme. And furthermore the suicide claim. That's quite serious. I engage in scientific criticism of people in the mold avoidance community often , for example finding gaps in theory or pracrice they have not necessarily addressed (like how mold avoidance usually doesn't heal cci), but accusing them of being the cause of a suicide is very serious. I imagine people would be upset if I said that without naming names or showing proof about respected doctor or researcher , like ron Davis or dr Kaufman.
I think that's the most offensive thing in your post and were you to either show proof or retract it , I would be very willing to accept an apology.

...

My point is, I hold the same level of respect for patient researchers and citizen scientists that I do for MD Phds working on this problem and so I think it should be taken just as seriously to claim that they caused a suicide as if someone did with a doctor or researcher

Suicides can happen with any protocol, with any doctor's recommendations, or personal choices, and no doubt do all the time. So perhaps it was unfair of me to single out this particular one. Also, although I remember some patients panicking because they felt they had no where else left to go (perhaps because they felt there was no where 'safe' to go -- and they'd tried various suggested locations), a suicide could've been the result of the mold toxicity and not the protocol itself.

And as I said in one of my first posts, there indeed ARE people who have gotten better via the 'Extreme Avoidance' protocol. But personally, I think there are far better -- less extreme -- methods out there.

Good luck w/whatever you choose.

 

[dannybex]

And yet, lisa petrison has stated that she doesn't think this map is reliable enough to use for avoidance and that she thinks its just interesting and important (as part of a larger scheme) data to report.

Then she should post that at the top of her "Locations Effect" pages.

 

[frozenborderline]

Then she should post that at the top of her "Locations Effect" pages.

I don't think the webpages make any claims that are not transparent.

 

[frozenborderline]

Suicides can happen with any protocol, with any doctor's recommendations, or personal choices, and no doubt do all the time. So perhaps it was unfair of me to single out this particular one. Also, although I remember some patients panicking because they felt they had no where else left to go (perhaps because they felt there was no where 'safe' to go -- and they'd tried various suggested locations), a suicide could've been the result of the mold toxicity and not the protocol itself.

I'm glad you recognize this. I think we can probably agree to disagree at this point.

It's important to realize that at least if you take us at our word, many me/cfs patients want desperately to live in pristine air in either conventional or alternative housing, and to have cci surgery, if we have cci. That could be seen as being on a bandwagon, but when you have mcas sym9toms and pain, and the two things they respond to is wilderness air and cervical traction, seems pretty obvious. And if we don't get those things we need--we may give up. And if you don't believe our expertise as patients and theorists and think that we were tricked into believing those things were essential, I could see why you'd blame a group or theory for our demise. But if you think that we do have agency and are canaries in the coal mine for environmental change , without enough support , financial or otherwise, then the correct viewpoint would be to think that it was the toxins directly and lack of support that killed us rather than the idea of toxins. And I think one reason why family members of people who died might prefer to believe the former is that the latter is really hard to swallow. The idea that you weren't able to support your family member is really bitter pull, even if the support they needed was above and beyond what an average family can provide. With that I think I'll mute this thread as we seem 5o have found a stopping point of agreement

 

[jason30]

And as I said in one of my first posts, there indeed ARE people who have gotten better via the 'Extreme Avoidance' protocol. But personally, I think there are far better -- less extreme -- methods out there.

Good luck w/whatever you choose.

I wonder which other and less extreme methods you mean?

 

[dannybex]

I wonder which other and less extreme methods you mean?

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

 

[jason30]

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

Please specify the methods you mean, what does anything means?

 

[Sledgehammer]

I'm glad you recognize this.
I think we can probably agree to disagree at this point. It's important to realize that at least if you take us at our word, many me/cfs patients want desperately to live in pristine air in either conventional or alternative housing,

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'.......

 

[jason30]

All I'm doing is saying I disagree with the "Extreme Mold Avoidance" protocol because I've seen, read, heard, and known of people who committed suicide, and known people who were much worse off after doing the protocol -- who developed severe MCS as mention above. I don't know of any other protocol where that specifically has happened. Maybe it has with other ones, but I'm not aware of it.

And if you disagree with me, that's great.

First of all, people didn't committed suicide because of the protocol. They just didn't saw a solution, in the past 10 years as mold avoider I lost (internet) friends by committing suicide because they couldn't find a solution to their problems with the toxins. They had many health problems and they didn't had the option to move to another house, or doing any protocol (no money , 3 kids, no husband , friends, family that care).

Most people in the mold community develop MCS because of the toxic overload, too many toxins in a short period together with methylation problems and low glutathione. This have nothing to do with the mold avoiders protocol!
I also developed MCS after being exposed to mold toxins for years (it was in the crawling space).

Including myself, there are many many thousands people that are helped by doing mold avoidance. You choose how extreme you do it.
I was bedridden and just by doing mold avoidance I work 40 hours a week. Did this solve my health problems (methylation, heavy metals, sibo , leaky gut)? No, of course not, but being able to work 40 hours a week feels good, and I am not only talking about the paycheck on the end of the month.

 

[dannybex]

Please specify the methods you mean, what does anything means?

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.

 

[frozenborderline]

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

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.

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.

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