Mold Illness & Myalgic Encephalomyelitis: Fact, Functional Medicine & Fiction
Facts
Mold-infested buildings cause sick building syndrome. (WHO, 2009)
47% of houses and over 85% of commercial building in the US have mold. (Lawrence Berkeley, 2022)
Some molds produce mycotoxins (CDC, 2022).
Mycotoxins can be detected in urine. (Hooper et all, 2009)
In cases of SBS immediate removal of mold or moving to a non-water-damaged building is necessary. (WHO, 2009)
Mold infection causes severe disease in immunosurpressed patients. (CDC, 2022)
Mold infections can be treated with antifungals. (CDC, 2023)
Active covid infection can surpress the immune system causing susceptibility to fungal infections such as black fungus and asperillingus (CDC, 2023)
Fungal infections can develop resistance to antifungals if not treated properly (CDC, 2023).
Treating mold is not the singular cure for ME/CFS
(NICE 2020, Mayo Clinic 2021).
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Maybe's
High levels of mycotoxins may be responsible for mold-related illness.
Inflammatory autoimmune responses to mold may be responsible for mold-related illness.
Commercial mycotoxin tests can verify mold illness.
In cases of mycotoxin-positive mold-related illness treatment with an antifungal may be appropriate.
Mold may be a trigger for MECFS to develop.
Long covid and MECFS may cause immunosuppression making patients more susceptible to fungal infections and mold illness.
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Why So Many Maybe's? Litigation.
Building owners who have tennents or employees living and working in their space have a legal responsibility for safe conditions. In other words, people disabled by mold illness can sue building owners for failure to maintain safe conditions by allowing mold to thrive.
While this may seem like a positive it provides powerful incentives for building owners who are generally wealthier and more powerful than tennents and employees to comission science that concludes mold is harmless. This is especially an issue as government and university buildings are often old and therefore prone to mold infestation.
Likewise class action lawsuits will comission their own science, concluding dramatic health effects of mold in every person who encounters it. The end result is a plethora of politcally motivated bad science.
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Mold Illness Is Real
While the question of what causes some people to develop severe complications from mold while others are relatively untouched is unknown, I believe it is easily concludable that mold illness is real.
This is because were there not people severely injured by mold, there would be no motivation for people to undergo lawsuits with dismal success rates, in addition to moving house and taking other drastic actions that do not benefit them financially.
While the WHO has refused to state that mold illness can be traced to a specific building, they have aknowledged sick building syndrome or SBS as a cause of illness and have stated that there is no such thing as a "safe" level of mold.
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Treating Mold Illness
Conventional Medicine
For acute fungal infections in immunocompromised individuals treatment with an antifungal like itraconzaole or vorconazole is used.
The only recommended treatment for "sick building syndrome" or mold illness related to exposure but NOT linked to a culturable form of sepsis or meningitis is removal from the toxic building. This is by far the most important in any mold treatment and often the most innaccessible especially to low income households.
Functional Medicine
Functional medicine goes further and treats those who have past exposure to mold and have not gotten better. They use traditional antifungals and antifungal supplements like monolaurin to attempt to kill suspected mold colonization in the gut or sinuses. Additionally a no sugar diet may be used to starve mold and binders may be used to remove mycotoxins from the body. Extreme caution should be used with binders in patients on other prescription medication as binders can stop the absorbtion of essential medicines.
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Differentiating Mold Illness & ME/CFS
Pracicioners claiming mold causes CFS do not claim it causes PEM. This likely indicates a low understanding of Myalgic Encephalomyelitis. They also tend to conflate and confuse chronic fatigue (a symptom) and ME or as they would generally call it "chronic fatigue syndrome" (a multisystemic neuroimmunological disease).
Therefore it is highly irresponsible for these practioners to claim that mold illness is responsible for all or most ME/CFS. We do not know the cause of all ME and it is most often a post-viral illness.
It should also be noted that mycotoxin tests used to "prove" ME patients have mold illness can be false positive due to diet, or can be positive due to mold exposure even when that mold exposure is not the primary cause of illness.
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Why Does Mold Affect ME Patients More?
Many ME patients report a strong benefit from mold removal or strong decline following mold exposure.
Candida is a form of yeast present in the average human microbiome. This is the yeast responsible for vaginal yeast infections as well as oral thrush. Candida is noted to affect the immune system in MECFS patients.*
The prevalence of candida infections (which can also be treated with antifungal medication) suggests it is possible ME patients immune systems are compromised in their ability to fight fungal infections. This may explain why moldy buildings are more toxic to patients with ME.
Another theory is that because many patients with ME have histamine intollerance and/or mast cell activation, we may react more strongly to mold thus leading to more improvements from a mold free enviroment.
*https://www.sciencedirect.com/science/article/abs/pii/0306987795905154
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Persistent Trigger Theory of ME/CFS & Mold Illness
The persistent trigger theory of ME/CFS believes that ME or CFS is caused by the immune system reacting continually to a persistent infection or toxin within the body. This is in contrast to theories that believe an infection simply pushes the immune system into a dysfunctional state that persists even after the infection is cleared.
The persistent trigger theory is favored by functional medicine doctors. It is also not a new theory and indeed there was a time when autoimmune diseases were not believed to exist and that "autoimmune" disease was only caused by persistent triggers. We now know this to be false as genetic autoimmune disease has no infectious link at all.
At this time it is unknown if ME is caused by a persistent trigger, autoimmune disease, or some combination. It is also possible that there may be subgroups some of whom have persistent triggers and others who have autoimmune triggers.
Any practicioner who claims to know the "true" cause of ME/CFS is lying. While we have ruled out some causes like deconditioning and depression, no singular cause is known to modern science.
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Takeaways
-CFS may be a misdiagnosis of mold illness. If you got sick living in a moldy building you should consider this possibility and look into treatment.
-Mold illness is not documented or claimed to cause post exertional malaise.
-Mold illness may be a trigger for developing MECFS.
-Curing mold illness is not a cure for MECFS.
-The government and capitalists have a strong incentive to surpress research on mold illness.
-Functional doctors have a strong incentive to promote expensive mycotoxin testing and non-conventional treatment not available through standard doctors.
-More research on mold illness is desperately needed.
-Advocacy for tennants rights and workplace safety includes fighting for research into mold illness.
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Mold Illness is a divisive topic.
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On one side you have functional medicine doctors who claim mold colonization is responsible for vast swaths of autoimmune disease and virtually all Chronic Fatigue Syndrome (CFS). That it can be diagnosed with mycotoxin tests and requires binders and detox as well as antifungals to cure.
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On the other side you have the WHO and CDC who claim that mold is only responsible for Sick Building Syndrome (SBS) in those actively living in moldy environments and that only the immuno surpressed require treatment with antifungals.
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Convoluting the science of all of it are numerous lawsuits between building owners with a vested interest in proving mold completely harmless and sick tenants and employees with a vested interest in proving their illness must have come from the mold they were exposed to.
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This post breaks down what we know for sure and the possibilities all chronically ill patients should be aware of. My goal is not to dismiss the experiences of anyone with chronic illness while making it clear what has scientific consensus and what does not.
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Practical advice:
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If you highly suspect the place you are living has mold and you have Myalgic Encephalomyelitis, Long Covid, POTS or MCAS and can move temporarily do. Give yourself a bit of time to see if being out of that environment and see if you improve. If you do, you should see what you can do to move permanently.
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Mycotoxin Testing is not a reliable way to diagnose mold illness. If you do choose to pursue it, ensure that you avoid any foods containing mold including coffee, chocolate, cheese, and dried fruit for a month prior to testing or else you may get a false positive.
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Environmental Testing is a much more verified way of showing mold exposure. It also leaves you with legal proof of exposure if you choose to sue your landlord, school or employer.
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Beware of the interests involved when reading scientific studies or consulting specialist doctors about mold. Always compare evidence from multiple sources. Pay extra attention to when a source says something that goes against the interest of the author.
