How to Make Sure an Invisible Disease Stays That Way: Why Those Who Are Mold Injured Should Be Outraged

The result of extensive mold avoidance, Erik Johnson on top of Mt. Whitney, after nearly dying from Stachybotrys exposure

Would you like a dose of outrage? Try this. 35 years later and we have proof.

Not proof that this illness is real. Not proof that it is biological. We know these things.

No, I’m talking about proof that the research community at large IS NOT INTERESTED IN RESEARCHING CHRONIC FATIGUE SYNDROME. NOT EVEN A LITTLE BIT.

The Invisibled Disease,” recounted the history of how a syndrome was made to disappear before our very eyes.

Two teachers from the Truckee teacher’s lounge happened to be in Peterson’s office when CDC epidemiologist Gary Holmes was there. They asked to see him for something that was on their minds. Gerald and Janice Kennedy, along with Irene Baker, wanted to know why the flu-like illness could rage through the school, but the teachers in that lounge were the only ones who didn’t recover.

Gerald Kennedy spoke of his speculation that perhaps the fumes from the copy machines made the difference, or perhaps something bad in the filters from the heating system. Could a toxic exposure be responsible for allowing the virus to take hold?

Gerald recounted, “I remember telling him (CDC epidemiologist Dr. Gary Holmes) about the air filters. You could tell he though we were a bunch of loonies. That was early into it, and we were still thinking, well, maybe we ARE crazy. But you would think we would be questioned, at least, and there weren’t a lot of questions. He just nodded his head. He seemed to have already made up his mind about us.”

Now… think about it. What did Irene, Gerald and Janice ask for?

Did they say, “Please Dr. Holmes, help us with the horrible virus?”

No, they wanted to know what it was about that particular room which made the difference in their health.

Here’s the bitter irony: history seems to always repeat itself. Same players, same location, same results, 30 years later.

On Sunday, August 7 2016, Simmaron Research hosted a patient update event in Incline Village, Nevada.

Dr. Daniel Peterson, one of the original two doctors at the original Incline outbreak was present, as were Drs. Hornig, Knox, and several others.

Also in attendance were the Center for Disease Control and Prevention (CDC), represented by Dr. Elizabeth Unger, and Truckee High School, represented by me, Erik Johnson, prototype (ground zero patient) appointed by Dr. Cheney who came armed with a load of documentation from the original outbreak, and who made the same request that was made 30 years ago by Irene, Gerald and Janice — to look into what was in the that room.

I took the opportunity at this meeting to offer documentation from the outbreak that started the Chronic Fatigue Syndrome (CFS) to researchers present at the update. He also offered to take anyone who was interested, including Dr. Unger, on the CFS History Mold Tour.

Simmaron’s “Patient Update”, meeting on August 7 2016. Dr. Unger from the CDC in the foreground, with Dr. Daniel Peterson standing behind and slightly to the left.

I sit and chat with Dr. Elizabeth Unger, who is holding my documents that were just given to her at this meeting.

To be fair, the only researcher present who showed interest in the documentation I brought was Dr. Unger from the CDC. The folks at Simmaron were dismissive, and actually told me that I was being rude. There you go. I think we all suspected that researchers weren’t the slightest bit interested in what patients have to say.

But how despicable for researchers who were actually there at the inception of a syndrome to completely brush off their own appointed prototype, who presented solid documentation from that time period which never was given consideration.

As far as Dr. Unger goes…

Here’s the solid proof that there is no interest in pursuing real research into the Chronic Fatigue Syndrome and its connection to toxic mold.


Dear Erik,

Thank you for your message. I have read the information you provided about mold at Lake Tahoe. I have made inquiries at CDC about how mold exposure is approached and have learned methods are not particularly reliable. I appreciate your offer to provide more information, but it is not necessary at this time.

Best wishes,
Beth Unger

You must be curious by what exactly I presented to the research team during that meeting. Here it is:

Truckee, California. Coincident with and reported as part of an outbreak of CFS in northern Nevada and California [13, 17, 24], 9 of 10 high school teachers who used a single, small, poorly ventilated conference room became ill sequentially. All nine teachers required a leave of absence, and two retired. Eight teachers remain ill 5 years after the onset of the outbreak. The one unaffected teacher spent less time than the others in the conference room, often doing his work outdoors. The conference room was one of four rooms serviced by an all-water heating system installed in 1985. It functioned by using variable air flow over a coil filled with hot water. The fresh-air vents were sealed with no other source of fresh air available. There were no functioning windows or air con-ditioning. A spirit duplicator and two coffee machines were in the room. The onset of illness was generally sudden, evolving over 1 month, and fatigue was the predominant symptom. Headaches, myalgias, and dyspnea were other common complaints. Photophobia was often noted, with difficulty keeping the eyes open even in darkness. Many individuals experienced recurrent sinusitis. The prevalence of severe fatigue is noted in Figure 1.

Concurrent sick building syndrome and chronic fatigue syndrome: epidemic neuromyasthenia revisited.

Chester AC, Levine PH.
Georgetown University Medical Center, Washington, D.C.
Sick building syndrome (SBS) is usually characterized by upper respiratory complaints, headache, and mild fatigue. Chronic fatigue syndrome (CFS) is an illness with defined criteria including extreme fatigue, sore throat, headache, and neurological symptoms. We investigated three apparent outbreaks of SBS and observed another more serious illness (or illnesses), characterized predominantly by severe fatigue, that was noted by 9 (90%) of the 10 teachers who frequently used a single conference room at a high school in Truckee, California; 5 (23%) of the 22 responding teachers in the J wing of a high school in Elk Grove, California; and 9 (10%) of the 93 responding workers from an office building in Washington, D.C. In those individuals with severe fatigue, symptoms of mucous membrane irritation that are characteristic of SBS were noted but also noted were neurological complaints not typical of SBS but quite characteristic of CFS. We conclude that CFS is often associated with SBS. PMID: 8148452 [PubMed — indexed for MEDLINE]

When the schools were first examined, air sampling was used… back when it wasn’t known that it would miss Stachybotrys. Even back then, finding one spore of Stachybotrys meant, “run for your life.”

There’s no doubt Stachybotrys is a butt-kicker. It’s always been. However, experts don’t seem to agree. They will do their version of “doctorsplaining” how it’s impossible to look into any one thing because we are surrounded by a “toxic soup” of sorts. This toxic soup theory has become a popular scapegoat that impinges on scientific inquiry and sets medicine back. How can people get help if the experts we rely upon aren’t doing what they are supposed to be doing?

For the past 35 years, it has been my duty to pursue the truth of what has been so neglected. As the years go by and as my inboxes fill with individuals and their families desperate for help from their mold injuries and ME/CFS diagnoses, losing everything, and some even taking their own lives because their doctors and their trusted researchers have left them without help or advice, it pains me to see that we haven’t moved the dial on finding advancements. Well, we did have some help from Shoemaker’s group but he has since dropped the ball on the mold factor.

Patients, now is the time for a revolution. Now is the time to let the experts know that we will no longer tolerate their failures. We need some answers and we need them NOW. Our lives depend upon it.

Writer: Erik Johnson, Research and Education Director, Exposing Mold Inc.