A new discovery about ecological toxicity sheds light on the ME/CFS epidemic

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@perrier
Do we? But not here in Germany… AI couldn’t process that bc it’s not a science like MIT where it only comes to logical decision making but valuation issues like justice play a big part in our legal system. This is not based on logic.
 

perrier

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@perrier
Do we? But not here in Germany… AI couldn’t process that bc it’s not a science like MIT where it only comes to logical decision making but valuation issues like justice play a big part in our legal system. This is not based on logic.
I am not sure what you are referring to with the question: Do we?
If it has to do with legal uses of AI, in Canada and in the USA and in the UK, there are AI programmes, like Quick Law and others, which lawyers access in order to gain access to the types of cases they want, and they can have the software refine the searches to amazingly very specific details. My daughter used to use this when she was working. I am not a lawyer as she was when she was well, so I can't go into specifics, but I can ask her, if you want.[/QUOTE]
 
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I am not sure what you are referring to with the question: Do we?
If it has to do with legal uses of AI, in Canada and in the USA and in the UK, there are AI programmes, like Quick Law and others, which lawyers access in order to gain access to the types of cases they want, and they can have the software refine the searches to amazingly very specific details. My daughter used to use this when she was working. I am not a lawyer as she was when she was well, so I can't go into specifics, but I can ask her, if you want.
[/QUOTE]
Not necessarily, I just wondered .., it’s the main difference between common law and Roman law… our law system works entirely different. But that’s off topic
 

mariovitali

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@perrier Thank you for the mention of my work.

I would like to give my two cents regarding Machine Learning, AI and other technologies such as Natural Language Processing and Network Analysis. These can be used in order to have results at a fraction of a time and generate data-driven hypotheses as to what medical concepts are critical on ME pathology.

Since ME is a multi-systemic disease we should be looking at systematically trying to "connect the dots". I see no better way of doing this by using the technologies listed above. Assuming that the data are not biased or flawed, they will give us the most promising research targets at a fraction of time. This means saving both money and time.

The problem i always had was that no one gave me an opportunity and help in order to evaluate this technology. I started using these methods in 2011, applying them to myself (collection of symptoms and supplements used for 434 days and then analysis of this data).

It took 6 years of development to create a software framework and a methodology which i later patented (USPTO).

The problem is that the system generates targets but not causes. So, it will identify relevant concepts without giving a context. I would like to share a recent example from COVID19. It is very possible that there are common mechanisms between ME and COVID19.


2021 Study : https://www.medrxiv.org/content/10.1101/2021.07.05.21260014v1.full.pdf

Results: DNA methylation patterns of COVID-19 convalescents were altered as compared to 41 uninfected controls, with similar results observed in in vitro stimulations of PBMC with SARS42 CoV-2. Differentially methylated genes from the in vivo comparison constituted the 43 foundation for the identification of a possibly SARS-CoV-2-induced module, containing 66 44 genes of which six could also be identified in corresponding analyses of the in vitro data 45 (TP53, INS, HSPA4, SP1, ESR1 and FAS). Pathway over-representation analyses revealed 46 involvement of Wnt, cadherin and apoptosis signalling pathways amongst others.

Now we go back to November 2018


Screen Shot 2021-07-10 at 08.35.33.png


Please observe SP1, along with nodes TP53, ESR1





And from the paper i provided we have the following Network Analysis, where SP1, TP53, ESR1 and other nodes are shown :

Screen Shot 2021-07-10 at 08.44.15.png




In other words, Machine Learning identified a potential target almost 3 years ago. There are many more examples where these techniques outperformed later findings including the importance of pyruvate dehydrogenase complex, Choline metabolism , phospholipids and peroxisome proliferators.
 
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Viala

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Any thoughts on the original article, feedback I can incorporate ?
I think mold and fungus can have a lot to do with ME/CFS, so it is very interesting information about Lake Tahoe, it have always made me think what really happened there. I've read your article and want to read further links, so can't say more about it yet. I wonder though if we can get more susceptable to fungal infections once we encountered mold or spend some time in WDB.

We got off topic with AI here, but what I wanted to say what is related a bit, mold and fungus are often ignored by doctors. I've asked about it a couple of them and here anything related to fungal overgrowth, candida or mold is seriously frowed upon. Why, if there is a lot of research on how it can strongly affect the whole body and not only research, just check fungal balls for example, it is as if they would prefer to keep it hidden, and same goes to AI, it would be only as good as data that it gets.

I think what we need to focus on in this particular case, is what we already know about fighting mold and fungus, take the right treatment and see how it works. For me it was always strange what they did in Lake Tahoe, attributing it to mass hysteria. This is not science. Maybe they don't want to look on other factors like this because this is not in their interest.
 
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Why, if there is a lot of research on how it can strongly affect the whole body and not only research, just check fungal balls for example, it is as if they would prefer to keep it hidden, and same goes to AI, it would be only as good as data that it gets.
for one thing , I do not think there is yet a lot of research on how it can affect the body. There is maybe a lot of mouse research but there's not enough high quality human studies. But that doesn't excuse them ignoring it, which I do agree with is almost deliberate.
I think what we need to focus on in this particular case, is what we already know about fighting mold and fungus, take the right treatment and see how it works.
I dont thinknthere are any standardized or evidence based treatments yet. Not to say there are absolutely zero treatments, I believe in trying things at the bleeding edge of science and not waiting for the overly slow formal scientific process to then translate to medicine finally. So there are things we can try, but bc of lack of interest I dont believe there are any standardized treatments
For me it was always strange what they did in Lake Tahoe, attributing it to mass hysteria. This is not science. Maybe they don't want to look on other factors like this because this is not in their interest.
yes, and so lazy too. Although what confuses me is even researchers who dont believe its hysteria dont look into the environmental toxin thing. Like the CDC, I understand why they would ignore environmental toxins if they ignore every biological theory or factor in the illness. But the ignorance by non cdc scientists is what blows my mind.
 

perrier

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@perrier Thank you for the mention of my work.

I would like to give my two cents regarding Machine Learning, AI and other technologies such as Natural Language Processing and Network Analysis. These can be used in order to have results at a fraction of a time and generate data-driven hypotheses as to what medical concepts are critical on ME pathology.

Since ME is a multi-systemic disease we should be looking at systematically trying to "connect the dots". I see no better way of doing this by using the technologies listed above. Assuming that the data are not biased or flawed, they will give us the most promising research targets at a fraction of time. This means saving both money and time.

The problem i always had was that no one gave me an opportunity and help in order to evaluate this technology. I started using these methods in 2011, applying them to myself (collection of symptoms and supplements used for 434 days and then analysis of this data).

It took 6 years of development to create a software framework and a methodology which i later patented (USPTO).

The problem is that the system generates targets but not causes. So, it will identify relevant concepts without giving a context. I would like to share a recent example from COVID19. It is very possible that there are common mechanisms between ME and COVID19.


2021 Study : https://www.medrxiv.org/content/10.1101/2021.07.05.21260014v1.full.pdf




Now we go back to November 2018


View attachment 43858

Please observe SP1, along with nodes TP53, ESR1





And from the paper i provided we have the following Network Analysis, where SP1, TP53, ESR1 and other nodes are shown :

View attachment 43859



In other words, Machine Learning identified a potential target almost 3 years ago. There are many more examples where these techniques outperformed later findings including the importance of pyruvate dehydrogenase complex, Choline metabolism and phospholipids and peroxisome proliferators.
@perrier Thank you for the mention of my work.

I would like to give my two cents regarding Machine Learning, AI and other technologies such as Natural Language Processing and Network Analysis. These can be used in order to have results at a fraction of a time and generate data-driven hypotheses as to what medical concepts are critical on ME pathology.

Since ME is a multi-systemic disease we should be looking at systematically trying to "connect the dots". I see no better way of doing this by using the technologies listed above. Assuming that the data are not biased or flawed, they will give us the most promising research targets at a fraction of time. This means saving both money and time.

The problem i always had was that no one gave me an opportunity and help in order to evaluate this technology. I started using these methods in 2011, applying them to myself (collection of symptoms and supplements used for 434 days and then analysis of this data).

It took 6 years of development to create a software framework and a methodology which i later patented (USPTO).

The problem is that the system generates targets but not causes. So, it will identify relevant concepts without giving a context. I would like to share a recent example from COVID19. It is very possible that there are common mechanisms between ME and COVID19.


2021 Study : https://www.medrxiv.org/content/10.1101/2021.07.05.21260014v1.full.pdf




Now we go back to November 2018


View attachment 43858

Please observe SP1, along with nodes TP53, ESR1





And from the paper i provided we have the following Network Analysis, where SP1, TP53, ESR1 and other nodes are shown :

View attachment 43859



In other words, Machine Learning identified a potential target almost 3 years ago. There are many more examples where these techniques outperformed later findings including the importance of pyruvate dehydrogenase complex, Choline metabolism and phospholipids and peroxisome proliferators.
@Janet Dafoe @teste
@perrier Thank you for the mention of my work.

I would like to give my two cents regarding Machine Learning, AI and other technologies such as Natural Language Processing and Network Analysis. These can be used in order to have results at a fraction of a time and generate data-driven hypotheses as to what medical concepts are critical on ME pathology.

Since ME is a multi-systemic disease we should be looking at systematically trying to "connect the dots". I see no better way of doing this by using the technologies listed above. Assuming that the data are not biased or flawed, they will give us the most promising research targets at a fraction of time. This means saving both money and time.

The problem i always had was that no one gave me an opportunity and help in order to evaluate this technology. I started using these methods in 2011, applying them to myself (collection of symptoms and supplements used for 434 days and then analysis of this data).

It took 6 years of development to create a software framework and a methodology which i later patented (USPTO).

The problem is that the system generates targets but not causes. So, it will identify relevant concepts without giving a context. I would like to share a recent example from COVID19. It is very possible that there are common mechanisms between ME and COVID19.


2021 Study : https://www.medrxiv.org/content/10.1101/2021.07.05.21260014v1.full.pdf




Now we go back to November 2018


View attachment 43858

Please observe SP1, along with nodes TP53, ESR1





And from the paper i provided we have the following Network Analysis, where SP1, TP53, ESR1 and other nodes are shown :

View attachment 43859



In other words, Machine Learning identified a potential target almost 3 years ago. There are many more examples where these techniques outperformed later findings including the importance of pyruvate dehydrogenase complex, Choline metabolism and phospholipids and peroxisome proliferators.
@HTester @Janet Dafoe @mariovitali @lindatannenbaum --- Time is of the essence when there are so many young people suffering so dreadfully and often due to unbearable discomfort on the verge of suicide. ( I can only speak from my own experience, but in my academic work (humanities) I was rather slow to embrace the current new technologies. It was my students who kept urging me to try technologies to make presentations more gripping, to facilitate research, and to save time for them and for me, ) I am urging OMF to please invite specialists like Mario Vitali to show them what AI can do to speed up the research. He has already built several software programmes, and has years of experience sifting through ME research, and investigating new pathways of relevance. But this AI work needs collaboration from ME specialist researchers and doctors. I hope my modest plea will be heard; it gets discouraging when there are methods to accelerate research and these are not perhaps as speedily implemented for a host of understandable reasons: money, customary habits, institutional structures, etc. Please OMF invite data scientists like Mario Vitali to present his research.
 

Viala

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I believe in trying things at the bleeding edge of science and not waiting for the overly slow formal scientific process to then translate to medicine finally. So there are things we can try, but bc of lack of interest I dont believe there are any standardized treatments
I totally agree, it is possible that it will be faster to find a solution on our own. It may take years to develop a working drug, but drugs come with side effects and rarely resolve the root problem.

I've been thinking about iodine, it has strong antifungal properties and many of us are iodine deficient, RDA is quite low. On top of that we get loads of halogens like fluorine, chlorine or bromine daily in our water and food which compete with it, as well as other toxins that deplete it. Not a quick thing to resolve though, it takes months or even years to replenish it, same goes to some other minerals. Iodine is of course a guess, just like many others, but I think it's worth a shot.

yes, and so lazy too. Although what confuses me is even researchers who dont believe its hysteria dont look into the environmental toxin thing. Like the CDC, I understand why they would ignore environmental toxins if they ignore every biological theory or factor in the illness. But the ignorance by non cdc scientists is what blows my mind.
I've read quite a bit of research on many health issues since my CFS has stared, and there is more strange ignorance stuff like this in a lot of medical fields. I think many or even most of people involved are business and income oriented, not health oriented, or at least not enough health oriented to research some possibly inconvenient topics or topics that will not be beneficial. They've also been educated to think in a certain way, their minds operate in a particular loop and anything outside of this loop is not considered worth investigating. But it is still baffling because ignoring for example environmental toxins is not even a logical thing to do.
 
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I think what we need to focus on in this particular case, is what we already know about fighting mold and fungus, take the right treatment and see how it works.
10 miles from here, is a large commercial building, sign says - they treat mold in water damaged buildings.

Why does anyone bother to do this? Somebody knows mold can make people sick. Just not doctors.
 
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But it is still baffling because ignoring for example environmental toxins is not even a logical thing to do.
A major issue is studying environmental toxins becomes a nearly impossible exercise, as you can't prove cause and effect and you have variables interacting and then to understand that in varied bodies is even harder.

The interactions and synergistic effects are even more confounding.
 

Woof!

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https://openletteropenmedicinefound...ical-toxicity-sheds-light-on-me-cfs-epidemic/

This post makes lots of really good points. I agree wholeheartedly with it and Martin's reference to 'genetic predisposition + multiple stressors + maintaining factors.' This is why it is so vital that ME/CFS patients advocate for and watch out for themselves (to the best of their ability). Relying on physicians and researchers to come up with a magic bullet that makes everything clear and better for everyone is like relying on three blind men positioned around an elephant to tell you everything about the elephant (the one describing the trunk only has so much information at hand, and it's completely different than the info the men at the elephant's tail and side have). ME/CFS is multifactorial, and contributing & perpetuating factors differ from person to person.

I'm new to Phoenix Rising. Has anyone ever done a survey of its members to see what everyone considers their contributing & perpetuating factors? It would be very interesting to see commonalities and outliers, alike.
 

nerd

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Again, I developed a urinary tract infection now when my water filter leaked for a few days. This happened multiple times now. Whenever there's something with the water filtering, I develop issues with the GIT or urinary tract.

I know that there are high levels of legionella in the water and I confirmed that there are coliform residues. It also smells a bit like old water. There are no metallic toxins in it, I verified.

Maybe it was just a coincidence that this also coincided with the condition worsening when I was in a better shape. At least, it seems to have contributed somehow. It's not normal as a man to develop urinary tract issues unless it's a STD, which isn't the case. I also have RBC in the urine, so it's most likely an infection of the kidney, bladder or prostate.
 
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Again, I developed a urinary tract infection now when my water filter leaked for a few days. This happened multiple times now. Whenever there's something with the water filtering, I develop issues with the GIT or urinary tract.

I know that there are high levels of legionella in the water and I confirmed that there are coliform residues. It also smells a bit like old water. There are no metallic toxins in it, I verified.

Maybe it was just a coincidence that this also coincided with the condition worsening when I was in a better shape. At least, it seems to have contributed somehow. It's not normal as a man to develop urinary tract issues unless it's a STD, which isn't the case.
Thanks for your contribution. Doesnt sound coincidental.
 
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I'm new to Phoenix Rising. Has anyone ever done a survey of its members to see what everyone considers their contributing & perpetuating factors? It would be very interesting to see commonalities and outliers, alike
Sounds like something @Hip might do but I'm not sure if he has. I would caution that there is probably self selection bias and stuff like that because the people who are adamant about mold avoidance mostly go on specific forums as they often feel the general ME/CFS community either is not welcoming of them or just doesnt have as much to offer them. So right from the start theres this massive disconnect. You could look at forums like the moldavoiders one , on or off Facebook
 

Woof!

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Hi @frozenborderline... Since asking that question, I put together a new poll (What is YOUR trigger?) on PR, and now have around 30 responses. Interesting results. Check it out!
 
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Why, if there is a lot of research on how it can strongly affect the whole body and not only research, just check fungal balls for example, it is as if they would prefer to keep it hidden, and same goes to AI, it would be only as good as data that it gets.
The proble! Is there isn't a lot of research on how it affects us. And they definitely don't study mold nanoparticles interactions or anything like that. So there is a !mountain of anecdotal evidence of people getting sick from their environment but researchers ignore it. https://openletteropenmedicinefound...o-the-open-medicine-foundation-by-thea-storz/
 
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what I don’t get is: why do others stay healthy when I get sick? I’ve never lived alone and I have never been abstinent... But I'm the only one who got ill with ME. So I don't think mycotoxins alone (!) are the culprit. Maybe in concert with other factors (that my family members, flatmates, friends, partners didn't have)
A good question, but it should be the beginning of an investigation, rather than being a challenge to the mold theory which is taken as a refutation.

Most scientists working on me/cfs take seriously the idea of environmental toxins or stressors of various kinds as part of the group of plausible causes. Robert naviaux writes about these in his research on the cell danger response. Paul Cheney wrote about this.

Have you guys heard the term canary in the coal mine ? People used to send canaries down into the coal mine bc they're sensitive to things like gas leaks , toxic air etc . If the canary came back healthy they'd go in, if it died or was sickened this was a warning that something was wrong. I think of people with this illness as canaries. I'm not sure if we are genetically more susceptible to whatever it is that makes us sick , or if we just have some kind of prenatal /in utero exposure to toxins that makes us a bit weaker and more susceptible, or if we have immune issues from birth that are moderate but asymptomatic until a nasty infection /exposure , or if there is just a lifetime of exposures and infections adding up stress on the body until something breaks. There are many possible explanations for why some people who get (x infection) or [y environmental exposure] become chronically ill and many don't. What I do know is that the people who don't get me/cfs from those things often still become unhealthy in more subtle ways.

For example, out of all of the people I know from school and non illness related activities and friend groups, almost none of them are free of mental or physical health issues. Two or three out of like thirty people I think are really thriving.

Many of the people who are unwell have adhd or depression or anxiety and you may say "those aren't physical health issues , its not comparable to me/cfs". To which I would counter , me/cfs isn't psychological, but many "psych" illnesses may have more of a physiological/organic nature than we know. I mean there are cases of schizophrenia improving with minocycline treatment, or depressed patients having high cytokines. There are studies in which adhd is higher in children exposed to pcbs, petroleum byproducts polluting big parts of former industrial zones esp. In the rust belt. I believe that so called psychiatric illnesses are often caused by toxic exposure and issues with the microbiome. I think that they involve immunological and neuroinflammatory and metabolic issues. I don't think these illnesses are solely about a few neurotransmitters and/or about oedipal complexes.

What I think is that people who are the most susceptible have really intense illnesses involving every body system and intense metabolic changes and inflammation and often even tissue damage , as in the cases of people with joint damage leading to cci or other spinal problems. But people who don't get things like me/cfs or cci or really severe illness are often having depression and adhd and anxiety andbsubclinical cognitive deficits caused by these problems.

Some of the people I know from school who don't have me/cfs ended up with bad gut issues, suicidal depression and anxiety. My sister, who grew up in the same house as me, doesn't have me/cfs , but has bad adhd , bad mcas (which was only diagnosed after I exhorted her to go to a specialist --regular docs missed that), etc. When she is in mold she reacts too , it's just that she doesn't have PEM, this is the main thing that separates her from me. But we both feel it.

She didn't know she was affected until she went to good air with me as a caregiver and then unmasked. It's like if someone eats gluten all the time they can't tell if it's affecting them bc they are exposed to it constantly. What we did is the equivalent of eliminating gluten for awhile and then reintroducing it and getting a clear reaction.

So now I know my sister reacts to this stuff despite not having me/cfs, and while we may share genetics we also shared an environment

The other people in that environment, the rest of my family, all have health problems. Mostly mental but some physical. Blood pressure snd heart issues , major bouts of anger /rage, depression, anxiety, anorexia nervous, etc. And while none of the others are as clearly convinced as my sister who is my carer, they have noted that when they were elsewhere they felt better.

Fhis isn't some perfect thesis statement but it's a start to explaining why I think some are susceptible and some seem not to be. BTW there are lots of chronic illnesses increasing in prevalence.

For example : https://atomicchesterton.blogspot.com/2021/03/notes-at-end-times-part-i.html?m=1
 
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Relying on physicians and researchers to come up with a magic bullet that makes everything clear and better for everyone is like relying on three blind men positioned around an elephant to tell you everything about the elephant (the one describing the trunk only has so much information at hand, and it's completely different than the info the men at the elephant's tail and side have). ME/CFS is multifactorial, and contributing & perpetuating factors differ from person to person.
To be clear I think our best bet for a solution is through research and and scientific medicine but we can't ignore environmental factors in the research. There very well may be medicine involved in the treatment even if we have to change the environment as well. We still need disease specific research and doctors. It's just that those researchers cannot ignore environmental factors. I write more about that here : https://atomicchesterton.blogspot.com/2021/03/notes-at-end-times-part-i.html?m=1
 
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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."
This could be because of higher pollution in China