When Dr DeMeirleir was giving a lecture at the Whittemore Peterson Institute, I reminded him of this 2004 conference and of my 25 years of effort to obtain an investigation into the evidence that started the syndrome.
He did.
I actually refused to do Dr Shoemakers HLA DR tests at first, because my trust in doctors has sunk so low.
This is why Dr Shoemaker didn't think I was a "double dreaded" in Mold Warriors.
Later, when he learned more of how serious I am about avoidance, he demanded to know, and paid for it himself.
So far, Dr Shoemaker remains the only one who has told CFS researchers about it, but they say nothing.
Which makes me wonder if perhaps our CFS researchers would like to figure out some way to completely
bypass seeing me vindicated.
Or at least delay it until after I've gone on to the big Compost Pile in the Sky and am not around to say "Told'ja so"
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Mold Warriors
By Dr Ritchie Shoemaker
Gateway Press 2005.
Chapt.23. Mold at Ground Zero for CFS
"History doesn't remember the critics"
page 447
-Answers from Abroad: Vindication for Erik
One of the researchers who was well represented at the CFS meetings was Dr Kenny DeMeirleir from Belgium. He has published extensively on the different mechanisms that contribute to Chronic Fatigue Syndrome. Before I could talk to him, however, Dr.Robert Suhadolnik presented his data on the enzyme complexity involving RNase-L. He had been working with Drs Peterson and Cheney for some time.
I asked him about mold and CFS. Making me fall to the floor, he said, "Oh yes, we know a lot about mold exposure in the original cohort in Incline Village. The source of activation of the endopeptidase that cleaves RNase L is increased response of a cytokine, alpha interferon."
"Now wait," I said, "our data is very clear that alpha interferon levels are increased like crazy in mold patients compared to controls. Can we say that mold exposure doesn't change RNase L like you have reported in putative viral CFS patients?"
Dr DeMeirleir chimed in, "We know that cytokine increases are important activators of the subsequent increased activity of these enzymes. Given your data, we need to look again at our data in which we clearly see changes in innate immune responses in CFS. Mold could be the common denominator.
The issue for me was that while DeMeirleir knews about MSH, innate immune response activation, including complement, coagulase negative Staph and changes in exercise tolerance and reduced VO2 max, he didn't know about VEGF.
But he knew about mycotoxin binding to Toll receptors (no one else did), in fact, he said that a Toll 3 receptor, a mycotoxin receptor, was critical to the abnormalities in CFS. When I said that the interferon and IL-1B increases could be mycotoxins, binding to the Toll 3 receptor, activated excessive cytokine responses that then altered genes expressing autoimmunity, VEGF and erythropoietin and lowered MSH with all its downstream physiologic changes, Kenny just smiled.
"Yes, when we can put in the changes in the other findings (increased elastase is just one example) that I know to be true, alongside yours, then we might begin to understand Chronic Fatigue Syndrome," he said.
Let's look again at the chronic fatigue from a mold perspective, looking at patients like Erik. Was there the potential for mold exposure at Incline Village? Sure, but no one looked properly. Was there a distinctive grouping of symptoms? Sure.
Was there a disciplined "ruling out," a differential diagnosis of all variables that led to the viral diagnosis. No.
Now that we know the biomarkers for the viral cause of CFS are not specific for viruses and indeed they're also affected by mold, can we rule out mold as the source of the illness? Of course not.
In the End.
Erik Johnson is a Mold Warrior. He'll never give up demanding that physicians recognize an obvious truth:
Mold hurts people.
He follows no one else's ideas because his ideas are uniquely confirmed by his time and his experience.
For 25 percent of the population with mold susceptible genotypes and exposure to indoor resident toxic fungi, no mold avoidance
protocols will reduce symptoms. For those like Erik, extreme mold avoidance is a successful strategy for a better life.
The point of this chapter is simple. We've come a long way since Erik's Incline Village experience. We can show susceptibility to
chronic mold illness that won't improve with mold avoidance with a genetic blood test. Mold illness, like Erik's, adds to the public
health burden beyond the genetic basis of chronce cytokine effects from biotoxins.
Regarding Erik's insights, I remain in awe. Despite the fact that his physicians weren't interested in his helpful insights and the incredible
personal abuse he took for his beliefs over the years, in the end he was right.