Open Institute for Neuro-Immune Medicine: ME/CFS: Detecting Mycotoxin Subgroup

Andy

Andy

Retired committee member
At the Institute for Neuro-Immune Medicine (INIM) Clinic, our clinicians discovered that some of their patients diagnosed with ME/CFS also had a mycotoxin exposure. Mycotoxins are toxic metabolites produced by molds/fungi. In a retrospective analysis, 111 ME/CFS patients' charts were reviewed in the INIM Clinic. The majority were women, aged 23-77 years old. They found 81 percent tested positive for mycotoxins, with Gliotoxin the most common (Laroche et al., 2017). The exposure to molds and mycotoxins can occur from contact with water-damaged buildings from dust from inhalation, contaminated foods or skin penetration. Mycotoxins trigger diseases including cancer, asthma, allergies and toxicity.

In this pilot study, we aim to build on our early retrospective clinical findings and explore whether exposure to mycotoxins is detectable in patients with ME/CFS by using the Environmental Exposure Questionnaire (EEQ), and laboratory testing for mycotoxins. As part of the INIM Clinic's goal of monitoring disease activity and response to treatment, at each INIM Clinic visit, patients fill out seven questionnaires to assess their current physical and mental functioning. This study will assess if the addition of mycotoxin exposure results in more severe symptoms in these ME/CFS patients. Blood will be stored from these patients for future analyses to discover if there is a specific immune or metabolic dysfunction, or epigenetic changes associated with mycotoxin exposure in these patients.

The significance of finding an ME/CFS subgroup of patients with mycotoxin exposure is that new treatment protocols can be developed and as a result to improve the quality of life of these severely ill patients. Additionally, this can serve as an additional precautionary note regarding the dangers of mycotoxin exposure, which can be publicized to decrease future exposures to mycotoxins.

We are currently recruiting females who are diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). If interested, please contact Dr. Alison Bested at (954) 262-2850.
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https://www.nova.edu/nim/research-s...ages/INIM-studies/19-20-PFRDG-mecfs-page.html
 
Would it not also be worth running a simple study to question peoples histories? Collect data from a large number of pwME and a large number of healthy people, and see if a significantly higher number of pwME were exposed to mould before (and possibly up to) the time they got ME, along with duration of exposure? It is a possibility for my wife.
 
Barry said:
It is a possibility for my wife.
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It's a possibility for my family too.

But the problem is that those of us with ME/CFS have had lots of time and motivation for reviewing our histories to find all possible causes for our illness. We've already remembered the various times when we might have had mould exposure. Healthy controls are much less likely to remember them, or attach any significance to them. I can't see how a questionnaire could be anything but biased.
 
Hutan said:
It's a possibility for my family too.

But the problem is that those of us with ME/CFS have had lots of time and motivation for reviewing our histories to find all possible causes for our illness. We've already remembered the various times when we might have had mould exposure. Healthy controls are much less likely to remember them, or attach any significance to them. I can't see how a questionnaire could be anything but biased.
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I suspect if you've been exposed to it for years, possibly without realising the possible health risks, then you would have a memory of it. Mouldy walls are pretty memorable.
 
Mycotoxins are toxic metabolites produced by molds/fungi... The exposure to molds and mycotoxins can occur from contact with water-damaged buildings from dust from inhalation, contaminated foods or skin penetration. Mycotoxins trigger diseases including cancer, asthma, allergies and toxicity.
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So... could mycotoxin producing fungi in the gut be a source of constant exposure?

I know Ian Lipkin has mentioned looking into booth fungi and viruses in the microbiome, in addition to bacteria.
 
Barry said:
I suspect if you've been exposed to it for years, possibly without realising the possible health risks, then you would have a memory of it. Mouldy walls are pretty memorable.
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Mould can also be hidden. I know somebody - perfectly healthy - who had no idea they were living in a mouldy house until they started on some renovations and uncovered the problem. The mould was tested and declared toxic. The renovations became rather more extensive than originally planned...
I don't know how common that is but I doubt many people, healthy people especially, can be relied on to correctly recall past exposures unless they were extreme.
Now, if they can find any mycotoxins in their laboratory testing, that would be much more convincing.
 
Does anyone know of an accurate, precise and reliable toxic mould home test kit where the samples are sent off to an accredited lab for analysis in the UK?
I would be interested to be able to tick off "mycotoxins" as a perpetuating factor in my decades with this disease.:thumbup:
 
janice said:
Does anyone know of an accurate, precise and reliable toxic mould home test kit where the samples are sent off to an accredited lab for analysis in the UK?
I would be interested to be able to tick off "mycotoxins" as a perpetuating factor in my decades with this disease.:thumbup:
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I don't think anyone even knows what should be measured. We all get exposed to moulds. That may mean being exposed to mycotoxins but that does not necessarily mean measuring mycotoxins in samples means anything. If mycotoxins caused ME I think we would have clues from clusters of cases in poor damp housing areas or farming areas or something.
 
Jonathan Edwards said:
I don't think anyone even knows what should be measured. We all get exposed to moulds. That may mean being exposed to mycotoxins but that does not necessarily mean measuring mycotoxins in samples means anything. If mycotoxins caused ME I think we would have clues from clusters of cases in poor damp housing areas or farming areas or something.
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And then the whole family living in same dwelling would get sick.
 
Medfeb said:
Not sure that's necessarily true - what if ME results from a combination of factors which could include genetics, exposures to environmental toxins, other factors such as a history of infections, age at exposure, etc
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I agree, and random factors in the immune response could come in. Illness would not necessarily show up in everyone in a family. What should show up is a correlation with Zip Code or equivalent. There has been a recent study indicating, if I remember rightly, that ME does not correlate with Zip Code at all, which is interesting. That points a lot to genetics and random factors.
 
Jonathan Edwards said:
There has been a recent study indicating, if I remember rightly, that ME does not correlate with Zip Code at all, which is interesting. That points a lot to genetics and random factors.
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Perhaps. But depending on the study design, it could also point to a meaningless "CFS" cohort based on bad criteria and/or the use by the medical community of "CFS" as a wastebin to dump clinical cases of unexplained fatigue. That's the likely explanation for the four-fold increase in prevalence in the CDC risk factor survey

In the case of water damaged buildings, I could imagine some clustering of that factor by zipcode but could also imagine a wider and more random distribution.
 
Medfeb said:
Perhaps. But depending on the study design, it could also point to a meaningless "CFS" cohort based on bad criteria and/or the use by the medical community of "CFS" as a wastebin to dump clinical cases of unexplained fatigue.
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I think with a big epidemiological study environmental signals would show up despite quite a lot of dilution. As for the GWAS proposal I am much less worried about dilution than I am about spurious associations coming uo because of internet based trawling.

Water damaged buildings would be distributed with by zip code and other ways, yes, but that is implicit in the methodology - there should be some weighting. Water damaged buildings are more common in down at heel districts in the eastern seaboard than in Phoenix Arizona for instance! For the illnesses related to micro-organisms that we know, geographical location comes up like a sore thumb on prevalence data.
 
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