August 11, 2016
This article takes a look at the bigger picture related to Biotoxin Illness – also known as Chronic Inflammatory Response Syndrome (CIRS). Specifically, it looks at why many of those who suffer from chronic illnesses, including CIRS, will continue to do so until they’re able to see past differences and form a unified front.
Right now, my impression is that the mold community is really fragmented as a result of differences in opinion on how to get better after having been made sick from mold exposure. One person will say ozone is the cure, another strict avoidance; a third will extol the benefits of following Dr. Shoemaker’s protocol. This is all well and good.
However, what often happens is that when disagreements and questions naturally arise, the opposing sides become entrenched in their views all the while ignoring the often vary valid and helpful view of the “opposition”. This needs to change. Those in the mold community need to begin to see opposing views as opportunities to find common ground and enhance the mold paradigm.
From what I’ve been told by others that participate in Internet groups, neither side really hears the other. No one takes the time to stop and reflect. No one takes the time to empathize with the other side – to make the effort to see the world through their “opponents” eyes. As a result of this limited view, biased conclusions are made with neither side ever really “hearing” one another. “In true dialogue, both sides are willing to change” – Nhat Hanh.
However, an even bigger impact is that this fighting keeps the community fragmented. The established power structures love in-fighting. The insurance, building, real estate, and property management industries laugh all the way to the bank when the oppressed fight among themselves. It’s important that you really take a hold of this vital point.
It is this point that lies behind why I find it so demoralizing and heartbreaking having to experience this type of pettiness regardless of the venue. In the context of Biotoxin Journey, it is the point that underlies why I had asked for a token fee for some of my content. It was my attempt to solicit the camaraderie I needed to continue to write.
I figured if some folks were willing to go through the effort of having to create an account just to pay the 25 cent fee for articles, then what I was writing must be of value. Some made the effort and others used the Amazon link so I continued to write. It was my way of creating a space where I felt like we were working together.
Just recently, the value to myself, and the importance to the mold community, of working together became much clearer. This was a perspective I hadn’t fully appreciated for myself until just recently and is, in part, why I think it’s important to write this piece. Let me explain.
Not long ago, I was involved in what should have been a trivial disagreement. I’d asked for slight change in position by a Reader and made very real efforts to address concerns that arose in the conversation that ensued. This was all to no avail. It was a really heartbreaking experience for me because all along I kept thinking to myself that the mold community is doomed if this is at all indicative of the level of cohesion among the mold community.
Said another way, the more we disagree among ourselves, the more we lose. When we fail to begin all discussions with words of praise for the effort it takes for competing views to be expressed and for the potential benefit to both parties from an open, caring, and honest discussion, the more we lose. The more time we spend drawing lines between ourselves and competing ideas, instead of always working to develop an ever more inclusive model, the more we lose. The more we’re unable to set aside small and even moderate differences, in order to promote cohesion, the more we lose.
I can assure you that without a united front, only a handful of those that suffer from CIRS and other chronic illnesses will ever find their way back to health. I don’t know about you, but this is utterly unacceptable. We all deserve to be loved and cared for well, especially when we’re ill.
In contrast, the entrenched power structures understand the importance of working together and do it very well. They don’t sit around and deliberate about word choice and technical nuances. They see the big picture and they ruthlessly execute in order to realize intermediary goals that then lead to broad reaching outcomes. These outcomes increase their positions of power and wealth. I strongly recommend those in under privileged groups including CIRS take note and embrace the same level of discipline. Failing to do so means forever being downtrodden.
Again, I’m not saying constructive debate on how to best treat CIRS isn’t important. To the degree that real care is taken to promote cohesion and develop a more inclusive model, it is very beneficial. However, the emphasis should always be on promoting community. This is what really matters. This is the key.
In other words, we can have all the good science and comprehensive understanding we want and it will not make a bit of difference if we can’t figure out how to work together. It is the number of people and their willingness to act that really matters. In terms of social change, science and truth are secondary.
Ultimately, having good science and a comprehensive understanding on why people get sick from mold is really just the glue that allows the community to stick together and act with conviction. We can do this with or without a perfectly formulated model. If you think that being correct or being truthful is a requisite to social change, just look at all of the really toxic models that are being foisted upon the public by a well-organized few.
Do you think the power structures controlled by a relatively few give a damn about what’s right? And yet, they’re dominating the landscape because they work together and understand how to make the “system” work for them. It’s time we did the same.
To give you a taste of what I’m referring to, take a look at the work of a true mold champion, Sharon Kramer. I strongly encourage you to watch her video below, Lawless America. Sharon explains that support for the claim that mold can’t hurt comes from well funded industry groups who paid for flawed science that was then disseminated to doctors through Federal funding from Washington. She describes how a “linear dose no threshold risk assessment model” was wrongly applied in a rodent study. The flawed conclusion drawn from this model was then distributed among the medical profession along with the insurance, building, real estate, and property management industries.
Specifically, she describes how rats were exposed to high concentrations of only one mycotoxin through inhalation for a short period of time. From this limited study, mathematical extrapolations were made on the data in order to support the conclusion that mycotoxins can’t make people sick. The authors of the study concluded this without ever taking into account the facts that people living in water damaged buildings (WDB) are exposed to a whole soup of mycotoxins and other biotoxins all at once, that exposure is not only through breathing but also the skin and by ingestion, and that people are exposed at low doses for long periods of time – not at all like the concentrated and brief introduction into the lungs as in the rat study.
Nevertheless, this single study was being used by the insurance industry to deny claims. In particular and according to Sharon, the non-profit trade association of the American College of Occupational and Environmental Medicine (ACOEM) used this study to support the claim that people could not be made ill by inhaled mycotoxins. Once the view that inhaled mycotoxins can’t hurt was vetted by ACOEM, Worker Compensation insurers had the backing necessary to deny mold claims. Later, additional medical communities used the same ACOEM statement or flawed methodology to support similar claims.
Once backed by the ACOEM, industry lobbyist (insurance, building, real estate, property management) paid to have the same data reworked again but this time to support the position that toxic mold is not a killer and those that believe it is are relying on junk science. This flawed science was then heavily marketed within the industry along with the medical community in part through funding from Washington. As a consequence, misinformed doctors often treat mold patients with contempt leaving them to suffer alone.
Sharon has been working tirelessly to expose this fraud and has been successful in getting ACOEM and others to retract their mold positions. She’s been doing this in spike of being attacked with bogus libel charges to try and silence her. Nevertheless, without a concerted effort by the mold community, a never ending stream of similar corruption continues to be perpetrated. If you’re interested in some of these details, see:
Katy’s Exposure – Mold Insurance Fraud
What’s the solution to this situation? Not one to mince words, Sharon rightly states, “The mold community needs to get off its ass and stop fighting in different areas…and get their act together.” She believes, and so do I, that it’s vital that we all push for Senate investigations into this insurance fraud. She rightly states that without seeing the bigger picture, without putting an end to big money fraud by showing the politicians in Washington that mold does indeed hurt, the mold community will forever remain marginalized and ignored.
OK, so that was a heavy piece of politics to get through. Hopefully you’re now starting to understand the concerted effort, dirty politics, and money that we’re up against. While this foe may seem unbeatable, we will easily win when united in effort.
United We Stand
Related to this discussion, I feel it’s important to point out that this type of corruption is trivial in comparison to other power plays against humanity. If you haven’t figured it out already, the odds have been stacked against the little guy for a very long time. This perversion spans across all spectrums of life and is very dark and deep indeed.
I’m not going to get into any details but suffice it to say that if you were shown how the world really works, you’d be like Neo in the movie, The Matrix. Upon being shown that his understanding of the world was all just a mental fabrication used by oppressive powers to imprison and use him for their own benefit, Neo cries out, doubles over, and vomits violently. I’ll spare you that experience.
Happily, you don’t really need to understand the whole picture. You just need to realize that your focus ideally will always be on presenting a unified front, in finding what’s similar between competing views instead of what’s different, on setting aside what are ultimately trivial differences in light of the real game that’s afoot. I’ve not met one person sick from mold, or one person that was trying to help them out, who weren’t sincere in their effort. All we need now it to refine our efforts a bit.
We just need to understand that we’re in this together. We need to agree on some very simple and basic understandings. For examples, that mold makes people sick, that removal from exposure and the use of binders is essential for recovering health, that mold causes massive inflammation that can be measured by looking at specific blood markers and changes in brain structure, that mold impairs the immune system and this leads to a whole host of diverse symptoms. Well, this is just an “off the top of my head” list. I’m sure as a group we could come up with a list of general statements that we can all get behind.
So we don’t need to figure out how to topple domineering power structures. They’ll fall over under their own weight just as soon as we make very simple changes in our daily lives. By making simple changes in our own lives, together we can make a big impact.
For examples, stop supporting big banks that work to enslave society by issuing massive and unpayable debt. Instead, put your money in local Credit Unions and banks. Stop getting baited into believing the only political issues at hand are limited to racial relations and issues around abortion. Instead, start voting for getting money out of politics and limited terms. I know you all are already buying organic and have limited chemicals in your homes. We all know this is essential for good health. Add to this, the understanding that the mold community needs to work cooperatively and focus on key issues like the one put forth by Sharon Kramer.
So maybe you think this is all a “pipe dream”. We’ll never get along and the controlling structures are too powerful. To that I fervently retort, “we can and they’re not”. Just to give you a taste of what’s possible by simply changing personal behavior, consider the fact that WalMart now has organic groceries. This is from a business that is all about the bottom line regardless of the social consequences.
And it doesn’t take everyone to get on board either. In Minority Rules: Scientists Discover Tipping Point for the Spread of Ideas, it was found that conviction of a mere 10% of a given population was all that it takes to bring about social change. Small but real change on an individual level multiplied over as little as 10% of the population can bring about lasting change.
So I’m just one guy who’s been through CIRS writing about what he discovered along the way. If you’re so inspired, there’s an Amazon link at the bottom of any page for when you go shopping. If you don’t like my content, that’s fine too. The point is that if you’re a “moldy”, then find some way to contribute to the community (by “moldy” I mean those made sick by biotoxins from mold, Lyme, some reef fish, and so on). Find some way to bring greater unity, or clarity, or better content, or love, or whatever it is that inspires you. Emphasize the good in others, and be caring and specific when issues are raised.
Surveying the Landscape
So here’s a bit of reflection on where I’m at right now in light of what’s just been said. It gets back to my decision to create a Members only section. I’ve been writing for this site for over 2 years while struggling to remediate my home and recover from CIRS at the same time. Those of you that have read some of my personal story know that for a time it was like living in hell for me. And yet, I’ve found the time and energy to write because I understood the importance of working together and I wanted to try and give people information on how to get better from CIRS.
Those that have come to the site for the last couple of days know that I shut it down. I did this to make the point that I’m not interested in being involved with a group of people that sound like a bunch of little kids squabbling on a playground. I have alternative venues with real potential for making a difference. I’m currently working with a local organic farmer. I’ve been brewing up batches of compost tea to spray on the land in an effort to restore the microbiology of the soil. This is equivalent to restoring the gut biome and is proving to be just as challenging.
I’m also learning about stray voltage. From an intellectual level, this task makes understanding and treating CIRS look simple. I’m doing this because I’m interested in supporting small farmers whose cattle, production, and personage suffer badly from this phenomenon. By the way, those that recommend “Earthing” by having bare skin contact a conductive surface that is then plugged into the grounding terminal on an outlet are not only completely clueless but are hurting others that then follow this advice. The alternative of using a separate, metal grounding rod outside is also very risky as the proper placement of this rod can only be confirmed with a high-end oscilloscope.
On top of these efforts to help out, I really do need to start making a living again. It’s not fair to for my wife to have to carry this burden alone. I’m currently rebuilding an old website. To do this, I have to learn the essentials of 5 different computer programming languages. I’m doing this after having my brain blown up like a balloon by CIRS, at an advancing age, and in light of the fact that the last programming language I learned was in college back in the late 70’s.
Given all of this, I’m compelled from time to time to stand back and ask the question on how best to spend my time. There’s writing for the mold community. Many suffer needlessly. There’s learning how to heal the land. If this isn’t done, it won’t matter in the long run if some suffer from CIRS or not. There’s working to save the small farmer. If we continue down the path of consolidating farming, not only are vital connections to Mother Earth lost but it puts society at serious risk. Large farms are by their design very unstable – not resilient. Even small changes in weather or price can put them out of business and this can have a big impact on society.
Right on, brother. CIRS (and Lyme) are just further examples of how capitalism exploits people for the enrichment of the unscrupulous few. With so much work to be done to change the world, it is often discouraging to see the people we need to do that work with us. I have benefited a great deal from your efforts, and am grateful for the resource you have compiled. Best of luck in your new endeavors.
Wonderful commentary! Thank you.
Rather than an Amazon link to you that we need to find when we make a purchase, yours needs to be my pop up link. Currently, I have EWG.org but am happy to make the change to you. If you know how to change the embedded link at Amazon, please let me know (along w/ all your subscribers).
Thanks for the support Susan.
The Amazon link is at the bottom of every page and uses this code:
But we all need to go to smile.amazon.com and do the following….
To change your charitable organization:
Sign in to smile.amazon.com on your desktop or mobile phone browser.
From your desktop, go to Your Account from the navigation at the top of any page, and then select the option to Change your Charity. Or, from your mobile browser, select Change your Charity from the options at the bottom of the page.
Select a new charitable organization to support.
When I’m shopping at Amazon, I don’t want to go looking for the link embedded in your site. It will simply pop up if we shop thru the smile.amazon.com link. Many times, if I forget and go to amazon.com, it reminds me.
That said, it is asking me for the name of your charity as it appears in Amazon (not the link). Please let me know.
Oh, OK, I think I’m getting where you’re coming from. I didn’t realize there was a way to have Amazon contribute a portion of a person’s purchases to a charitable organization. Biotoxin Journey is not a charitable organization. I realize there are people out there accepting donations without declaring the proper tax status but this is actually a very risky proposition. The work involved in creating a nonprofit organization is definitely not worth the small amount folks contribute – and this is as it should be. I’m just looking for a small show of support.
Oh well, no worries. If you remember, that’s fine. If not, that’s OK too.
Oh! Sorry to bother you w/ extra information. If I’d stopped to think, I would have realized you aren’t a charity!! (Quite the opposite …. so much giving and lots of squabbling coming back!!)
I will make a sticky note for my computer so it’s handy.
Now you’ve got it 🙂
If I may, big hug.
Thank you for your contributions to so many. I have read your materials and learned from you as I’ve navigated mold and Lyme issues. You absolutely have the right to decide how to best utilize your time and emotional/intellectual resources! Just know that whatever you decide, you have made an impact. I’m sure you will continue to do so as you move forward.
There are things only another CIRS patient can “get”, and the way you write about it, well, it sounds like I’m writing it to myself. But the “me” that’s writing it is a bit further down the healing path, and nudging me gently (and sometimes not so gently) to stay headed in the right direction. Pretty invaluable.
Through the influence of your writing people have ended up helping and educating others, even though super sick. The last paragraph you wrote is so true. What’s the phrase…the meek shall inherit the earth? Each little drop of knowledge and truth slowly spreads around and keeps building strength. People really appreciate information coming from someone else who has lived through this and can discuss it openly. But also having privacy and your own healing space is so important. The controversy and chaos is hard to handle.
It certainly isn’t an easy topic to write about and I think you’ve truly knocked it out of the park. Thanks!
Nicely said. Yeah, the controversy is hard for me to take. From my perspective, all the different “factions” of the mold scene have some unique insights to offer. There is too much time and energy spent hiding behind given positions and not enough trying to incorporate alternative views.
It was encouraging for me to see naturopathic doctors Milani and Thomson on Saturday of the 2015 CIRS Conference talk about the use of Resveratol to bring down MMP9 and Mucoadhesive Polymer Gel (MAPG) to aide in the treatment of MARCoNS respectively. I thought this was great because here we’re seeing the mixing of two very different approaches to medicine in new ways to help patients.
It’s encouraging. Now if we could just get a little help headed in Sharon’s direction, the future would look even brighter…
Hello! Great site. Your CIRS hell article saved me at my worst… All that being said, Are you better? You completed Shoemaker protocol correct? How do you feel?
I don’t like to comment too much on my own health status because where I’m at is influenced by many factors. I’d hate to think someone didn’t take treating CIRS seriously based upon my health status. For example, I spent a couple years finding hidden mold sources in my house and remediating them while still living there. This is a huge impediment to health. Also, while CIRS may be the sole contributing factor for poor health for some, commonly there are a few health limiting factors to deal with.
Having said that, I feel like the CIRS chapter of my life is over for the most part. I’m now taking VIP. I’m not really sure how to measure my health status as I’ve been ill for a long time. What do I use for a point of reference?
I can tell you that all the nasty anxiety and the wide range of totally bizarre symptoms are completely gone. I can do hard work and not really be any more tired than what I’d expect from someone of my age and history – probably even less. My brain works reasonably well but it still feels like it’s “water logged” at times. My sleep is very much better and continues to improve.
Still, I’m not running at “full throttle”. I’m looking into dental issues, heavy metals, and parasites. You can read about my dental issues in Dental Health. I’ve lived overseas in third world conditions for what adds up to years. I used to work in a foundry where it was quite “normal” for guys to die within a few years after retiring. So there’s some other damage to reverse.
Alas, if I’d only known a fraction of what I know now, I could have spared this poor body and mind a lot of grief. Still, I have to be grateful for the journey.