Here are a random selection of comments from Erik from over the years on this topic.
And this, if anyone cares, is just a tiny tip of the iceberg.
There's a WHOLE LOT more to this biotoxin phenomenon, in the event that anyone is interested.
I hope it doesn't take another 25 years for folks to figure out that they should be.
Best, Lisa
*
I never claimed I discovered the cause of CFS.
During the epidemic, I told Dr. Cheney and Dr. Peterson that I had a progressive and inexorably increasing reactivity to mold. I theorized that the reactivity was "infection induced.”
When they told me that CFS was viral, I asked why a virus would care about mold and when they said that it wouldn't, I replied, "Then whatever’s got me must be a bacteria because it seems to care a great deal about mold.”
I have no idea what causes CFS and am not qualified to find out.
All I know is that when I was fighting for my life and had nothing else to try, mycotoxin avoidance worked....and that I have never met a CFSer yet who failed to complain about the very clues that led me to try this crazy scheme.
-Erik (2004, Locations)
*
I have never claimed anything more than what I have seen and limit myself to the observations I make and can show to others.
I don't use the words "causes CFS.”
I only say that the mycotoxin connection is a verifiable part of the overall phenomenon, but that it's only visible to those who are willing to see and test the clues.
-Erik (2006, Locations)
*
Nowhere did I assert that mold is the sole cause of CFS symptoms.
I have I never even used that word "cause," for reasons of the instant rejection that using this word induces.
For decades, I have said that I simply observed that others who were in the original CFS cohort shared a similar response to certain molds but they were unaware that it was mold they were responding to.
-Erik (2007, CFSResearch)
*
AIDS patients know that when their CD4/CD8's fall below a certain ratio, their viral titers shoot up and secondary infections emerge. Sometimes treatment of these infections restores enough immune surveillance to restore the ratio and knock down the virus.
So there may be many avenues for treatment that don't specifically address the fundamental dysfunction but have an apparent effect.
I suspect that when CFSers try some crazy thing that has a wondrous effect, as mycotoxin avoidance has for me, it is just finding one of many ways to climb one rung up on the immunological ladder.
I didn't say that mold was the cause.
I said that the vast commonality of this irritant is a clue to the etiology of the illness.
-Erik (2005, Locations)
*
There's a well-known pox virus in AIDS called Molluscum Contagiosum. It's a child’s disease, easily controlled by a normal immune system.
The AIDS researchers know precisely what CD4-CD8 ratio allows the poxvirus to blaze into activity.
Virtually anything that boosts immune function just barely over the threshold that keeps Molluscum in check will drive it back into latency. It doesn't matter what it was that boosted the immune system - could be just about anything.
If one didn't know this mechanism, people trying to "cure" Molluscum Contagiosum would see success by many different "cures" and give credit to each one that worked indiscriminately.
In 1985, when I told Dr. Cheney about this weird effect, he said CFS was viral. I just replied that for some reason, mold had a specificity to it that made it worthy of investigation.
That specificity is the reactivation of latent infections of almost any sort.
-Erik (2007, Email)
*
People get so confused when I talk about my mold experience and still say that CFS is the exact illness that Dr. Peterson called the CDC for.
I never said mold causes CFS. Just that CFSers seem to be severely affected by mold.
All I was doing is taking advantage of this knowledge to reduce my pain as much as possible.
Since I'm one of Dr. Peterson’s cohort that the strange Human B Cell Lymphotropic virus (later to be renamed HHV6 and then HHV6a) was found in, it'd be kind of silly for anyone to think I was saying that mold is the cause of everything.
What I said to Dr. Cheney and Dr. Peterson was that while they were figuring out what the "Yuppie Flu" thing was, I was going to exploit the benefit of avoiding the influence of that mysterious factor which blows in on the wind.
-Erik (2008, CFSU)
*
People just hear what they want to hear, so they can think what they want to think.
I keep insisting that CFS happened exactly as described in Osler's Web, which means that we had a novel "HBLV" virus that Gallo-Salahuddin had just stumbled over in AIDS patients... and yet when I talk about "The Mold Connection to CFS,” people twist it into, "Erik says mold is the cause of CFS.”
Well, without the HBLV, the illness I think of as CFS wouldn't be what it is. So mold alone is clearly not what I am saying. And I use the word "mediated" instead of "caused" to describe the effects of mycotoxins on the cytokine cascade.
Doesn't work. People just keep hearing, "Erik says mold - mold - mold is everything,” and there's just no way to stop 'em.
-Erik (2008, CFSU)
*
What I said was "an effect from mold.”
People interpreted this as, "Erik says mold causes."
And since mold is well known not to "cause,” mold was ruled out and the clue was relegated to irrelevance.
-Erik (2009, Locations)
*
From the inception of CFS, doctors have told me that mold doesn't matter, because this kind of reactivity is just the result of something else.
So I said, "Fine. While you figure out what that something else is, I'm going to stay away from the mold."
There's no doubt in my mind that this was a good choice.
Who cares whether it is a result of P450 decoupling or anything else, if one can stay away from it and get a life back?
-Erik (Email, 2010)
*
My exact words were, "Why would a virus care about mold?", and when Dr Cheney said that a virus would not have any particular specifity, in terms of a response to mold, I rejoined "Then it must be a bacteria, because whatever's got ahold of me seems to care a GREAT DEAL about mold".
Right next door to Dr Cheney and Dr Peterson's old Alder st office is a "China Chef" restaurant. I got a fortune cookie which says "The simplest truths are the last to be believed."
I laughed and stuck it in the first page of my copy of Osler's Web.
It's still there.
-Erik (NewDynamic, 9/10/10)
