Perhaps They Just Forgot

Guest blog by Erik Johnson

“Ground Zero for CFS” :

Fraught with meaning.  This conveys that there WAS a start point to this syndrome, a time and place that can be checked, to see how it all came about.

“Mold at Ground Zero for CFS”, Chapter 23 of Dr. Shoemaker’s book Mold Warriors adds a new dimension.

Not only is there a start point to the syndrome, but a CLUE as well.  Something a researcher can sink his teeth into.

I thought the “Sick Building” phenomenon that started CFS was an incredible thing, and since so many people said they wanted to solve CFS, believed they would want to hear about it.

Thanks to the new age of computer “social media”, I was able to make direct contact with hundreds of doctors, researchers, toxicologists, mold and CFS advocates.

Much to my surprise, the information I gave them about “Mold at Ground Zero for CFS” hit a dead-stop, every time;  A very odd way to show one’s interest in solving a mystery.

Mold at Ground Zero

As told in my chapter, I literally launched this syndrome by telling Dr. Cheney about the mold.  “I have an inexorably increasing reactivity to mold that grows progressively worse no matter where I live.”  But over the years, my reactivity grew more acute.  So did my chemical sensitivity.

In 1997, Dr. Peterson had told me “You have become a universal reactor. (to chemicals) Life is now intolerable for you.”  His only treatment option was Ampligen, and I couldn’t afford it.

With nothing else to try, I opted to try a “crazy” strategy of “Extreme Mold Avoidance”, and was quite surprised and pleased at the results.  My chemical sensitivities vanished.

Back at this time, “Toxic mold” was unknown but I felt certain that specialists in Multiple Chemical Sensitivity would want to know that mold could be as nasty of a chemical exposure as anything they were implicating.

I contacted quite a few MCS groups, who all responded very negatively, as they believed mold to be nothing more than an allergen. They were quite insulted that their “SERIOUS disease of MULTIPLE CHEMICAL SENSITIVITY” might be compared to a mere allergy, and were quite free in telling me just how wrong and mistaken I was to think I had a serious illness from “mere” mold.

Mold vs Chemicals?

One of these groups was the Chemical Injury Information Network.

I spoke on the telephone with Cynthia Wilson, who seemed interested when I explained that I am an Incline Village survivor and prototype for Chronic Fatigue Syndrome who “found a clue”, but as I described the toxic mold, her responses grew more impatient and aggressive.  Finally she exploded.  “It is CHEMICALS I tell you, CHEMICALS, damn it.  I am SICK AND TIRED of hearing people blaming each and every stupid irritant they discover.  There is no end to it.  CHEMICALS are the real cause, your mold allergy
is nothing more than a consequence.  The only reason I put up with listening to your story is that shortly before her death, my friend Cindy turned her attention to mold. BUT MOLD IS NOT THE CAUSE. IT IS CHEMICALS”   and hung up on me.

I hadn’t known until that moment that her friend and colleague, Cindy Duehring had just passed away.

I read about Cindy Duehring’s life and was amazed at her pesticide exposure, chronic progressive MCS, and that after all her years and writings about chemicals, at the very end of her life, dramatically switched her focus to mold.  I could tell by the way Cynthia spoke that for Cindy to do this was utterly baffling to her, seemingly a totally betrayal of everything she had formerly stood for.

It seemed to me that after building a safe house and exhausting all other exposures, the fact of still being “hit” pointed at something that must be transported  into her presence, but she couldn’t quite figure out what it was.

It sounded like we were on a parallel course, and just as I had done when my reactivity hit a point of picking out specific irritants, both found that a mysterious one stood out that was surprising and unexpected.  A specificity to “mold”.  Cindy’s story of reacting to her husband coming from work with fumes and chemicals clinging to him sounded very classic for how “mold reactors” perceive the problem, until they realize that mold appears to be a carrier, almost like a Trojan Horse, for these chemicals.

What a horrible shame that she figured it out, but wasn’t in time to devise a directed strategy toward this overlooked mold factor.

It is notable that the MCS groups all looked upon complaints of mold with such contempt. They were clearly unaware of toxic mold.

Ultrafine Particles

In 2002 I became aware of a toxicologist, Dr. Jack Dwayne Thrasher, whose work looked absolutely awesome. I read over his impressive body of work with mold.   He even seemed to think ‘ultrafine particles” might be important, which is actually one of the first things  we blamed during the 1985 Lake Tahoe Mystery illness, as we were being heavily bombarded with silver iodide “cloud seeding”.

cloud seeding begins

We thought these ultrafine particles might be affecting the environment. Protests were even held against cloud seeding, for no one knew what the consequences of being drenched with these minute silver particles would be.

I thought that surely here was the one that would take interest in my story and help me tell the world of the mold connection to Chronic Fatigue syndrome.

Yahoo groups were popular at this time, and I joined a group where he was an active member. I began to tell my story.

I told of my discussion with Cynthia Wilson and how I believed Cindy Duehring’s illness was similar to the progressive “Tahoe Mystery Malady” of those people who stayed in contact with toxic mold.  Dr Thrasher told me that he was an advisor to the Chemical Injury Information Network and a personal friend of Cindy Duehring.

“Then you know that she switched her focus to mold”, I grew excited. A breakthrough!

Here is where it got weird, for Dr. Thrasher had the same attitude as Cynthia Wilson.
Chemicals.. not mold.

I asked him, since he was a personal friend with Cindy and her husband, if he could ask for information she had assembled on mold, prior to her passing. There would undoubtedly be valuable clues. At the very least, perhaps her reasoning for this shift from blaming chemicals to a sudden “turnaround” on mold, which was so bizarre to her colleagues that it almost seemed that she had become a traitor to the MCS community.

Dr. Thrasher declined.  Not even Cindy Duehring’s interest in mold caught his attention.
Despite his own work with mold, he didn’t appear to believe it, and blamed chemicals instead. He told me I was mistaking formaldehyde exposure for mold exposure.

Stunned at Dr. Thrashers’ strange diversion away from mold, I exchanged stories with others in this group, in front of him so he would see more mold
clues, perhaps changing his mind.

A mother of autistic boy described a peculiar behavior, asking for help in figuring it out.
He absolutely would not go to a certain corner of the house.  This was taken by doctors to be some kind of emotional “fear” type behavior. But she said the odd thing is that when outside in the yard, he avoided the same corner.

Dr. Thrasher suggested that wood panels were releasing formaldehyde, causing his avoidance-behavior.

I questioned why such off-gassing would be limited to one corner, especially in such concentration that he could feel it outdoors, and offered up the concept that it was toxic mold.  For this level of avoidance was perfectly consistent with mine.

Dr. Thrasher stuck to his formaldehyde concept.  So I suggested this lady have her house tested by Dr. Gary Ordog, who was knowledgeable about mold illness.
She did, and that corner was positive for Stachybotrys.

Now, I realize that nobody likes to be proven wrong, especially in public, but still, I hoped that this demonstration would pique his interest in toxic mold and CFS.

It did the opposite.

Back to Truckee

Over the next few years, Dr Thrasher seemed bent on minimizing toxic mold, in favor of formaldehyde exposure.

During the Hurricane Katrina “Toxic Trailers” debacle, Dr Thrasher brought a great deal of attention to high levels of formaldehyde, yet at the same time, even as he mentioned mold, somehow managed to minimize it out of consideration.

I hoped that after Dr. Ritchie Shoemaker’s book Mold Warriors was published, Dr. Thrasher would reconsider.

But the events of 2008 showed that he had not changed his views.

I had watched this complex as it was built.  Prefabricated modules that were brought in on trucks and stacked by cranes, but the work wasn’t done by winter. The rain and snow drenched the unprotected modules.  I told my brother that this was bound to be trouble.  This looked like a mold disaster before the roof was even installed.

Yet here again, in a place where I predicted mold, could feel it outside, Dr. Thrasher diverted the tenants from mold and toward formaldehyde.  And this was in TRUCKEE, just on the other side of “Ground Zero for CFS”  It became clear to me that Dr. Thrasher had no intention of coming around to connecting mold and the syndrome.  Not only was he failing to mention it to these tenants,  he wasn’t going to say anything at all about knowing the story of how mold was an unspoken part of the equation at the inception of the syndrome.

A local survivor of mold from 1986 wrote a letter to the editor, explaining how this was mold rather than formaldehyde, but got no reply or response from anyone…  anyone except me.

The tenants became disenchanted with the formaldehyde hypothesis and hired another mold inspector, Jack Goshow, who shifted the focus back to mold.

I felt this was a terrible loss of an opportunity to make progress on solving Chronic Fatigue Syndrome, because Dr. Thrasher was familiar with my story, had worked with Dr. Shoemaker, was right  there on the spot in Truckee, and so far, had been the only mold researcher I had seen to even mention the possibility that ultrafine particles might be important.

Ever since 2008 I have used this apartment complex as a “demonstrator” on the “CFS History Mold Tour”.  Many of the ones I have taken there can’t make it across the parking lot, let alone get inside Tracy Penner’s front door.

Lack of Communication?

As told in Khaly Castle’s blogs, after the Whittemore Peterson Institute was built, I made many trips up there to educate them about “Mold at Ground Zero for CFS”, and offered to take Dr. Judy Mikovits… and any who were willing.. to come to “The Mold Tour”

So far, no takers, although they are all very much aware how my story has been confirmed.  I even gave them copies of Dr. Shoemaker’s book Surviving Mold.

The years crept by. All the CFS and mold researchers continued playing with their various concepts, plodding along, and still showing no interest in just going back to where CFS started.. and ask a few questions of those who were there.

With all this in mind, IMAGINE MY EXCITEMENT when this came out.

Wow.  Here it is.  Dr. Thrasher has FINALLY taken an interest in “mold and CFS”, even co-authoring a paper with Dr. Brewer, who is a scientific advisor for the Whittemore Peterson Institute – ALL of whom know the mold history.

Surely now they would want to put all the pieces together.

Shortly after Dr. Brewer’s paper came out, he was asked where he first heard of mold.  Oddly enough, he said the idea never crossed his radar until the RealTime test came out.  How very strange that Dr. Brewer was completely surrounded by people who all know the story of Mold at Ground Zero for CFS”.. all of whom I had ASKED to pass this story along to researchers, and yet, if what Dr. Brewer says is true, not a single one of his associates told him.

I wonder why they didn’t?  Perhaps they just forgot.

Now, as everyone who has read my story knows, the crux of “Extreme Avoidance” is to decontaminate after passing through “plumes”, so as to keep minute amounts of some incredibly nasty stuff out of my sleep zone.

One of the first stories I told Dr. Shoemaker in 2002.. ironically at the same time I was pursuing Dr. Thrasher to be the one who would help me unveil this paradigm to the world… was of a lady who had tried everything in the book to get better from CFS.
Then she suddenly got better “for no reason”  This was as mystifying to her as it was to everyone else.  She said it was totally baffling, for NOTHING had changed.   Except this.
“My husband retired, and is hanging around the house all day, driving me nuts”

Wow. There it was.  Her husband was no longer going somewhere and bringing “the stuff” home on his clothing.  A scenario that perfectly fits my decontamination protocol scenario.

And perhaps what Cindy Duehring apparently became aware of, but her epiphany came too late to do anything about it.