A panel of research and medical specialists in the disease of ME/CFS shared their thoughts about ways in which the role that mycotoxins may be playing in the disease should be studied in a recent panel discussion held at the UC Berkeley School of Public Health.
The panel discussion was held on February 20, 2018. It followed a screening of the movie “Unrest,” in which filmmaker Jennifer Brea mentioned the benefits that mold avoidance had provided with regard to her own health issues.
A transcript of the portion of the film focusing on mold avoidance issues is on a separate page of the Paradigm Change website.
Following is a transcript of the discussion of the panel members with regard to mold and mycotoxin issues.
Contributing to the discussion were Dr. Ronald W. Davis, a research professor at the Stanford University School of Medicine; Dr. Jose G. Montoya, a clinician and professor at the Stanford University School of Medicine; Dr. Lily Chu, a medical doctor in clinical practice; Dr. David Tuller, a journalist and faculty member at UC Berkeley; and Erik Johnson, a survivor of the Lake Tahoe outbreak of the disease that went on to be called “ME/CFS.”
A video of the panel discussion also is available for viewing.
My name is Erik Johnson. I’m an Incline Village survivor and an original prototype for the Holmes Chronic Fatigue Syndrome. I noticed straight off that all the clusters were occurring in sick buildings. In fact, every cluster that I encountered and every individual patient that I approached had some kind of connection with a sick building. We asked the CDC about it at the time, but of course, they weren’t interested. But I chased it down and found out that all the buildings had toxic mold. This was definitely a factor in the syndrome. But I’ve been told since then that I have no proof. Now, my question is, as a prototype for the syndrome with direct documented evidence from the original clusters investigated by the CDC, I felt that I have a right to have this investigated. So I was just wondering what constitutes a relevant clue that warrants attention from the research community.
What level of evidence should trigger a legitimate investigation into something, more or less.
We did have the Sick Building Syndrome buildings investigated and the finding of toxic mold was confirmed. The problem was that at the time, it hadn’t been discovered yet and wasn’t entered into the literature. So when Dr. Cheney and Dr. Peterson looked into it, they found no reason to suspect toxic mold as a factor. So in order to take this into account, we would have to revisit these events and take a look at whatever role it might have played.
Are there any environmental scientists from the public health school? That’s one thing I would ask. I will say – it’s not my area, I’m health services – but environmental factors are hard to analyze, because we’re all exposed to so many things. To narrow it down to one factor is very difficult if you’re talking about a population. Now if you’re talking an individual patient, you know, then there’s nothing to say you can’t go and experiment and go somewhere else for a few weeks. You saw the movie, she went for a more radical way. But you know, you could see if that makes a difference in your health.
And she did find it worth pursuing, in her case.
And that’s going to be an individual decision. But at a studies level, it’s very difficult.
I think that every clue has to be taken seriously and without forgetting that we need to apply the scientific method with rigor so that we set an example. I think that by studying the way we are doing ME/CFS that there will be other disciplines that are going to benefit. But we need to maintain the scientific rigor and the scientific method.
We plan to undertake a study for that. I’ve talked to you about that too. I think we need to find out what organism or organisms are responsible and then, also, what do they produce? One of the problems is that these mycotoxins, which is what you’re referring to, are really toxic. Aflatoxin is the most potent mutagen of any compound known. And they work at very low concentrations. I’m sure that what the molds produce, they use as a defense mechanism, because it will kill off anything.
And the technology for measuring their concentration is really not there. That’s one of the technical problems. There are labs which will test it for you, but they’re on the Quack Watch. They’re actually below the detection limit of the technology they’re using.
However, there is some new technology out there, and that’s what we do. And we’ve increased the sensitivity by 10,000 fold. And we could be able to develop an assay for it.
So that is in the plans. It’s going to be a long time when we have to be careful not to spend too much money on it, because it will take time to put that all together. But I do plan to do it.
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