Epidemiology and Environmental factors in ME/CFS

[Hip]

MODERATOR'S NOTE: THE FIRST 33 POSTS IN THIS THREAD HAVE BEEN COPIED OR MOVED FROM THE THREAD Any recent MECFS outbreaks?

Anyway wouldn’t long covid be considered the latest “outbreak”? I wonder if it’s concentrated in any specific areas.

If you look at the list of historical outbreaks of ME/CFS-like illnesses, you find in some cases the outbreak was very localized (to a building, institution or village), but other cases the outbreak was more widespread, across a city or region.

In the case of very localized outbreaks, this is where I think a local environmental factor present in the building (such as toxic mold in the building) may have been behind the outbreaks, along with the virus, in a dual-factor etiology.

But in wider ME/CFS outbreaks across a city or region, it's unlikely there is an environmental factor present in the whole region, so these type of outbreaks may just occur when a new strain of virus hits a town or region. But of course for each person who develops ME/CFS from this new stain of virus, a dual-factor etiology may be at play: they may have developed ME/CFS from the virus because their immune system was compromised from mold, major chronic stress, or other factors.

For the ME/CFS-type long COVID cases that are appearing everywhere, this may be an example of the latter case: where a new virus hits town.


Note that long COVID is thought to consist of a number of different illnesses, one of which is post-viral fatigue — and that's the one which might become ME/CFS in some people, if the PVF does not clear up after a year or so. But at the moment, it is too early to say for sure whether coronavirus can trigger ME/CFS, because we will only know that after a few years, if the long COVID patients with PVF never recover.

 

[Murph]

But in wider ME/CFS outbreaks across a city or region, it's unlikely there is an environmental factor present in the whole region, so these type of outbreaks may just occur when a new strain of virus hits a town or region. But of course for each person who develops ME/CFS from this new stain of virus, a dual-factor etiology may be at play: they may have developed ME/CFS from the virus because their immune system was compromised from mold, major chronic stress, or other factors.

It will be interestig to see if some areas or workplaces get higher rates of long covid for a given rate of covid. I expect yes.

 

[frozenborderline]

you look at the list of historical outbreaks of ME/CFS-like illnesses, you find in some cases the outbreak was very localized (to a building, institution or village), but other cases the outbreak was more widespread, across a city or region.

In the case of very localized outbreaks, this is where I think a local environmental factor present in the building (such as toxic mold in the building) may have been behind the outbreaks, along with the virus, in a dual-factor etiology.

But in wider ME/CFS outbreaks across a city or region, it's unlikely there is an environmental factor present in the whole region, so these type of outbreaks may just occur when a new strain of virus hits a town or region. But of course for each person who develops ME/CFS from this new stain of virus, a dual-factor etiology may be at play: they may have developed ME/CFS from the virus because their immune system was compromised from mold, major chronic stress, or other factors.

This makes no sense to me. if one considers all of the unknown and known unknowns, toxin and pollutant wise, it is quite possible to have problematic indoor air quality that stretches miles and creates "sick region syndrome " . The toxic mold doctors and most me/cfs researchers really have blinders on with regard to outdoor air quality and the supertoxin plumes that can dominate whole regions. Of course you may claim that there is no evidence for this... well if this isn't studies of course there's no evidence.

And we wouldn't even know where to start. So many chemicals to choose from. It's well known that many solvent Superfund sites like the ones in palo alto or Ann arbor create plumes that are large and make many people sick. But there is coastal mercury fog, nanoparticles of many materials (not pm 2.5 , and not measured by conventional air quality indices), mycotoxins and increasingly cyanotoxins , pesticides , etc. Actually if u just look at the physics of particle size , the idea of toxin plumes that are very "sticky" and also aren't easily blown away by wind etc, or dumped on ground by gravity makes sense for nanoparticles.

Environmental toxins and health will subsume both genetics and pathogens as the most important factors in disease and health in the near future.

 

[Hip]

This makes no sense to me. if one considers all of the unknown and known unknowns, toxin and pollutant wise, it is quite possible to have problematic indoor air quality that stretches miles and creates "sick region syndrome " .

There's certainly good evidence for urban pollution to increase health problems. Air pollution is linked to increased risk of heart disease, atherosclerosis, stroke, etc.

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.

In the case of Lake Tahoe, Erik Johnson proposed the toxic cyanobacteria called Microcystis was the cofactor. When I read about Microcystis, I learnt it is very immunotoxic (see this paper). So this is not any old toxin, but one which specifically clobbers the immune system. Then while your immune system is crippled by such an immunotoxic substance, a virus comes along, and it's curtains.

So I think you would have to have an immunotoxic substance that covered a whole city or region of a country if you want to explain these large outbreaks.

You would have to have a toxin that covers an entire specific city, to create an ME/CFS outbreak in that city, whereas the other adjacent cities in the same country are untouched by the toxin, so do not experience the outbreak.

Maybe something in the water supply could do this. Bergen in Norway had a Giardia outbreak in 2004, leading to a lot of cases of ME/CFS.

 

[frozenborderline]

@Hip until its studies its strictly speculation but we have this. https://paradigmchange.me/wp/outdoor-toxins/

Its not just speculation , its speculation based on meticulous observation of thousands of cases across the US. Clusters still exist

 

[Murph]

@Hip until its studies its strictly speculation but we have this. https://paradigmchange.me/wp/outdoor-toxins/

Its not just speculation , its speculation based on meticulous observation of thousands of cases across the US. Clusters still exist

I'd even argue that Norway and the UK (separated by the North Sea but not *that* far apart) both have disproportionate levels of ME/CFS. From that you could argue shared genetics or latitude. But perhaps there is a shared environmental factor too? (it doens't have to be shared air pollution, it could be some shared method of building, or building material, or shared species of microbe, etc.)

Obvioulsy ME/CFS literacy is higher in those two countries than in a lot of the world, leading to more diagnoses but I don't think that's a killer blow to the hypothesis that rates of ME/CFS are also higher. You'd expect a disease to be more recognised where it has higher incidence.

 

[dannybex]

@Hip until its studies its strictly speculation but we have this. https://paradigmchange.me/wp/outdoor-toxins/

Its not just speculation , its speculation based on meticulous observation of thousands of cases across the US. Clusters still exist

I respectfully disagree. It was hardly meticulous. Several hundred patients posted over the years that they felt worse in this area, or that city, with nothing concrete to back up this hearsay evidence, just speculation.

 

[frozenborderline]

I respectfully disagree. It was hardly 'meticulous'. Several hundred patients posted over the years that they felt worse in this area, or that city, with nothing concrete to back up this hearsay "evidence", just speculation.

You're free to disagree but note that I didn't claim it was any more than speculation. What I find meticulous is systematizing the observations, not necessarily the observations themselves, and constructing testable hypotheses based on them.


Neither of us can know which is correct in the disagreement, but my contention is just that these things be studied, not that anyone accept the claims at face value. And it seems that this nonetheless manages to upset people.

Many environmentally ill people suffering from homelessness etc would agree. And it's also true that the scientists ignoring the environmental issue are making basically no headway working on their own separate theories but I admit that could be just bc they don't have enough funding.

 

[frozenborderline]

nothing concrete to back up this hearsay "evidence", just speculation

I personally said it was speculation, but respectfully, without studies being done, which is the main thing we are asking for, how does one have anything "concrete " to back up observations ?

Anecdotes and observations are the first part of the scientific process. We haven't done careful observation and epidemiology in me/cfs, otherwise the environmental patterns would have been noticed. As @Hip has noted, the dual-factor (environmental factor plus pathogen) theory of me/cfs would explain the geographical pattern of outbreaks.

 

[frozenborderline]

One could also argue that all of the existing, more mainstream theories about me/cfs, from metabolic toautoimmune, to viral, are speculative bc there is not really that much high quality evidence to support any of them. And yet that doesn't mean we don't discuss them as if plausible.

 

[dannybex]

You're free to disagree but note that I didn't claim it was any more than speculation. What I find meticulous is systematizing the observations, not necessarily the observations themselves, and constructing testable hypotheses based on them.

Neither of us can know which is correct in the disagreement, but my contention is just that these things be studied, not that anyone accept the claims at face value. And it seems that this nonetheless manages to upset people.

Many environmentally ill people suffering from homelessness etc would agree. And it's also true that the scientists ignoring the environmental issue are making basically no headway working on their own separate theories but I admit that could be just bc they don't have enough funding.

Thanks for your clarification. I suppose Petrison's work could be called 'meticulous', but the fact that the observations were based on beliefs and feelings and not in any way backed up by any testing in these locations, negates the work IMO.

It 'upsets people' because it has been tested. Many patients have indeed tried it and found some benefit, but others have ended up committing suicide because the hypothesis they were following was based on the false notion that certain 'locations' were unsafe, while others were 'pristine'. Entire CITIES are called out as unsafe, which of course is just nonsense.

So they go from one location...feel better for a bit...then get worse (and often end up worse than they were before they started the 'extreme avoidance', suffering from MCS that they'd never had prior to leaving their homes and getting rid of all their belongings.

If that happened to you or someone you loved, I'm sure you'd be upset too.

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

I'm not trying to be a crank. I'm just -- as a veteran of this illness -- trying to help people from falling into traps like these.

 

[Pyrrhus]

It 'upsets people' because it has been tested. Many patients have indeed tried it and found some benefit, but others have ended up committing suicide because the hypothesis they were following was based on the false notion that certain 'locations' were unsafe, while others were 'pristine'. Entire CITIES are called out as unsafe, which of course is just nonsense.

So you're upset just because some ME patients have no choice but to take actions into their own hands?

Or you're upset because you think cities are perfectly safe places to live for everyone and anyone who disagrees with you is delusional?

Please think twice before you make such statements. Thank you.

 

[frozenborderline]

So you're upset just because some ME patients have no choice but to take actions into their own hands?

Or you're upset because you think cities are perfectly safe places to live for everyone and anyone who disagrees with you is delusional?

Please think twice before you make such statements. Thank you.

Thank you. I'm almost too upset to engage with this thread but that articulates my feelings perfectly

 

[dannybex]

So you're upset just because some ME patients have no choice but to take actions into their own hands?

Of course not.

I -- and others -- are upset because we've seen too many people die because of this specific protocol. I'm not talking in generalities, I'm speaking about the 'Extreme Avoidance' protocol promoted by Petrison and Johnson and Shoemaker, who lost his license because of this protocol.

Or you're upset because you think cities are perfectly safe places to live for everyone and anyone who disagrees with you is delusional?

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.

If you can't find that, then please think twice before you make such statements. And thank you.

Please think twice before you make such statements. Thank you.

 

[dannybex]

Thank you. I'm almost too upset to engage with this thread but that articulates my feelings perfectly

I'm sorry this upset you, truly. That wasn't my intention, as noted above.

 

[Pyrrhus]

Of course not. I -- and others -- are upset because we've seen too many people die because of this specific protocol. I'm not talking in generalities, I'm speaking about the 'Extreme Avoidance' protocol promoted by Petrison and Johnson and Shoemaker, who lost his license because of this protocol.

That's perfectly understandable. I am also upset over those deaths. But we must resist the urge to blame faulty theories. We must always remember to blame the illness, not the theory. Reasonable people can disagree on which theories are faulty, especially when so little is known for certain.

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.

If you can't find that, then please think twice before you make such statements. And thank you.

I apologize, I spoke hastily and unproductively. You did not say that and I apologize again.

 

[frozenborderline]

It 'upsets people' because it has been tested. Many patients have indeed tried it and found some benefit, but others have ended up committing suicide because the hypothesis they were following was based on the false notion that certain 'locations' were unsafe, while others were 'pristine'. Entire CITIES are called out as unsafe, which of course is just nonsense.

I wonder if you think Beijing would be a safe place for someone with asthma . If a doctor said Beijing is a bad place to live for someone with asthma, would u say " this is hysterical , crazy, to say entire cities are bad". Or Los Angeles in the nineties during the peak smog. Anyway what you are saying about "false notions" is totally unfounded... you can't say x is false without doing. a rigorous study. You are not holding yourself to the same level of rigor here that you require if you say it has been tested, apparently by people doing avoidance, and those anecdotes negate the other anecdotes? What I meant is there haven't been any proper double blinded controlled studies onthis, or air sampling studies with level of severity of me/cfs matched to level of vocs and nanoparticles, etc. Its quite an assertion that people have committed suicide based on someone telling them about the locations effect. I'd almost call it slanderous if it weren't so vague and indirect. I know people that I believe committed suicide because of the locations effect not being studied! Because if it were studied, it could be treated in an affordable way, covered by medical insurance , without some kind of desperate lifestyle. I think the framing here is so dishonest. I am totally find with agnosticism on important scientific questions but to assert that people putting out materials on anecdata about the locations effect on health is leading to suicide is so ridiculous that it makes me question the ability of us to have a good faith question. Severe ME and the lack of funding into researching the cause is what causes suicide. Anne ortegren never attempted mold avoidance or read these type of materials, yet committed suicide bc her mcas and mcs was so severe... do you think that she was making up those symptoms due to "beliefs" about the effect of locations or allergens or irritants on health ? Do you think that those of us who have these symptoms are having psychosomatic illness? I don't know much about what experiments you have tried with the disease but imagine if you said you were experimenting with some sort of vitamin or supplement that had. plausible theory behind it for working and my immediate response was that I was sure that it was a placebo effect and that it shouldn't be studied. What you are saying is one step removed, at best, from wessely or per fink. The people that commit suicide bc of me/cfs are generally doing so bc the disease is miserable and they were not able to cure it, not bc of mass hysteria inducing symptoms in certain locations.

So they go from one location...feel better for a bit...then get worse (and often end up worse than they were before they started the 'extreme avoidance', suffering from MCS that they'd never had prior to leaving their homes and getting rid of all their belongings.

many people with me/cfs already have mcas or mcs that is sevree without having to induce it through such. a manner. and what you are doing here is not better evidence than what you are arguing about. You are simple describing anecdotes. I could just as easily dismiss it as you dismiss the anecdotes lisa Petrison wrote about , except maybe easier, And I mean, have you considered that with mcas and all of the types of immunological hypersensitivity that me/cfs patients are noted to have, that they could really be experiencing sensitivities and not having nocebo effects ?

If that happened to you or someone you loved, I'm sure you'd be upset too.

What HAS happened to me that I find veryupsetting, is that I have developed permanent ligament damage without a hereditary connective tissue disorder or head trauma, and apparently years after the initial infection, with many signs that it is related to na acquired inflammatory disorder such as mcas (high tryptase, high mmp-9, high histamine, high IgE) etc. And so I have to have surgery to fix this, but in the meantime my ligaments may continue to become more damaged bc not only is research funding for this illness so scant, but nobody is looking into this specific problem--environmental causes of inflammation, especially nanoparticles, mold, vocs , andmetals, despite hordes of patients begging researchers to do so. So it makes it almost impossible for patients like me to recover. Now if you think that I got noceboed into having craniocervical instability, I would be impressed by the level of delusion.
But my point here is that I am personally exyremely upset about being let down both by me/cfs researchers who refuse to study this connection, and by bureaucrats that don't fund this disease at NIH, and by patients who get in the way of either goal. Is that upset feeling just as valid as the hypothetical people or family members upset about their family members being taken in by the ideas of mold avoidance? Am I allowed to be equally upset about this, since my life has been ruined by scientific and epistemological neglect? Bc I can guarantee there are thousands like me, even if you think they'rewrong .

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

wow. Interesting assertion, with absolutely no evidence. You and I know that recovery from me/cfs is extremely rare, especially from severe ME, and so I'd expect some evidence. I see an asymmetry here. I am happy to admit when my evidence or assertions are based on anecdote or observation or give whatever caveats, but you make extremely confident assertions without backing them up with evidence. I think that patients are adults and can experiment with whatever they want to try, I don't see mold avoidance as more inherently extreme than taking ketotifen, ampligen, thiamine, or ivig. Or having cci surgery. Basically all treatments for me/cfs are lacking evidence equally, beyond anecdotalevidence, but this board exists for people to try things and gather anecdotal data and make inferences and make scientific hypotheses, since none of us have a lab afaik. And so I don't have a problem when someone says "I have noticed thiamine/ivig/bcaas bringing a number of patients from bedbound to housebound , and recommend it, also it should be formally studied " . And for symmetry sake, I'd like if observations about environmental phenomena , counterintuitive as they might be to some, are given the same weight. Studied just as much as other treatments , and not dismissed out of hand angrily.

Thanks for your clarification. I suppose Petrison's work could be called 'meticulous', but the fact that the observations were based on beliefs and feelings and not in any way backed up by any testing in these locations, negates the work IMO.

I personally think that when someone like @Hip collects very detailed anecdtata on what level of illness people have moved from and to with given experimental treatments, that that is meticulous work bc of the details he is collecting and collating via survey. The fact that it is not a formal study doesn't change that I think collecting observational or epidemiological data via survey, in large quantities, is "meticulous " . I feel the exact same way about petrisons work.

By the way what is your theory of me/cfs etiology and the treatments you think are evidence based ? And do you think that the overwhelming amount of mainstream scientific evidence for connections between , for example, air pollution and covid 19 risk, are unfounded fearmongering ?

 

[frozenborderline]

I'm sorry this upset you, truly. That wasn't my intention, as noted above.

I admit that I make arguments that have strong biases often but except in the case of discussing people who promote the harmful psychological and dnrs treatments For example, I don't believe that ongoing viral infection is the cause of me/cfs any more than you believe that mold is , and yet I don't think that its "harmful" to promote the theories that viruses play a role in this illness. Did you know one of Chias patients committed suicide (it's in the notes on the autopsies he's done for enteroviruses) ? Well, if I use your line of reasoning, maybe it's because Chia influenced him with a false theory to think that only antivirals could help him and when they didn't he felt hopelessness and committed suicide bc of these extreme theories... except that would be ridiculous bc we all know that we are coming up with speculative theories by the seat of our pants and that it's goodto theorize and experiment and we'd have less hope without people doing that. Anyway, I believe strongly that environmental toxins and pollutants are underlooekd and should be studied more and treated more, through avoidance if not detoxification. And I don't believe that about, say , enteroviruses. And yet I don't have any vitriol for people who believe enteroviruses play a role in me/cfs, I don't think their theories are totally discredited (when we have this little good evidence how can any theory be discredited--eprhaps besides the psych theories which are the most thoroughly studied with the most consistently poor results ), and I don't think they're part of a dangerous cult that is convincing people to do crazy treatments.

I would like the same courtesy extended my way. I have been harmed by the type of rhetoric you're espousing.

 

[frozenborderline]

Of course not.

I -- and others -- are upset because we've seen too many people die because of this specific protocol. I'm not talking in generalities, I'm speaking about the 'Extreme Avoidance' protocol promoted by Petrison and Johnson and Shoemaker, who lost his license because of this protocol.

could you name someone who has died because of doing avoidance? Or died bc of those theories ? I have no doubt that some peoples families think avoidance seems strange and like a cult thing. And that they may choose to blame those theories for their child's suicide. And yet, I don't think hurt feelings by a family necessarily show any causality in a death. If someone was told something like "there are no risks to mold avoidance , go to death valley in summer without any caregiver while very ill" and then the me/cfs patient overheated or died of starvation , I could see a strong case for negligence. But I've never seen anything like that.

Anyway, I've talked to Erik for years, and have actually never seen him claim avoidance can cure everyone or really anything besides that we should study this because it has had effects in many people. In fact I've seen him say we don't know if this effect applies to everyone with me/cfs, tons of times. I've also seen him point out that he lives in Tahoe, the town that he got sick in, to show how "localized" the bad air effect is and can be, and that if you are skilled you don't need to write off whole cities. With regard to shoemaker I don't really care about him but he's certainly not. a proponent of extreme avoidance and his books advocate a very different approach to mold (just moving houses basically, and taking some detox meds, not concerned with outdoor air at all) than lisa and Erik's. That isn't even that important to me, I'm not that enamored with his ideas, but the fact that you got that basic fact wrong seems to point to you either having a poor grasp on these ideas or deliberately misconstruing them, which makes me wonder if you're engaging in bad faith and if its 2worth continuing.

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.

That's perfectly understandable. I am also upset over those deaths.

I am upset about many deaths of me/cfs patients but I don't think Danny has provided any examples and as far as I am concerned he's just using vague examples which he may have an idiosyncratic interpretation of as a cudgel, to beat this theory with. As you say we can't really blame theories for failed implementation and disappointment. The disease takes. a strong psychic toll on every single person with it and many end up dying of suicide after they give up on trying to fix it. Normally they've tried many treatments by that point , and I would not blame methylation theories or antivirals on their death just bc someone tried those, was disappointed in the results, and then gave up.

 

[dannybex]

@frozenborderline I agree with you that environmental toxins and pollutants can definitely play a role.

I'll bow out of the conversation and wish you the best.