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Ep#23 - Erik Johnson: Escaping Chronic Fatigue Syndrome

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Erik Johson Show Notes


Erik's Mold Map


The whole point of redefining CFS (chronic fatigue syndrome) was to put distance between CFS and the initial incident it was based on to keep it in maximum confusion - and loosened up on the psychiatric exclusion, whereas Holmes (definition) was clear that psychiatric must be excluded


When Erik saw strong connection between mold and CFS, he proposed to Dr Cheney that since he was focused on the viral factor, Erik would focus on the mold factor


The 1994 study by Chester Levine "Association of concurrence between sick building syndrome and CFS: Epidemic neurasthenia revisited" - was a study of clusters, including Truckee school - mentions other clusters including Elk Grove in California, where same exact malady emerged in teacher in a sick building


It took Erik several years to find out what specific mold was involved, but it was Stachybotrys Chartarum (SC), the dreaded black mold, same as the Lake Tahoe - Erik thought this should be included in the CFS criteria so that they become a putative mold reactivity patient


If CFS patients have mold reactivity, they can be instructed on how to avoid it and reduce symptoms - Erik tried to identify the worse place / buildings in Lake Tahoe and created a map to avoid them and started to recover


Erik thought he could maximize his recovery be spending more time in the nearby Nevada desert - he was eager to get back into aviation and hanging out a small airport - one day he sees a 'crazy man' out in the desert heat raking, by hand, a 700 foot landing strip


Nearby was a tractor with rake attached, set up to do the job - Erik asked him about it and got a strange look, as his mental wheels were turning - he said 'I've got this strange illness, I'm from Incline Village, Nevada, and doctors tell me I have CFS, and I come out to the desert because it is the only thing that helps' - he was coming to the desert for the exact same reason as Erik


They started telling other people - and taking them to the 'toxic' areas of town to see if they reacted and decide if they wanted to try to avoid mold - this is how the CFS Mold Tour began - he's taken many prominent people on this tour, author Julie Rehmeyer (Through the Shadow Lands) and she became a mold avoider


Powerful neurotoxin


Jennifer Brea, director of documentary Unrest also got Mold Tour and realized she needed to avoid mold too - what is curious to Erik, is that no researcher enquired about why Jen was avoiding mold in her documentary


Erik has asked researchers at screenings of Unrest why they think Jen is doing that - but he has not been able to drum up any interested researchers - because SC is one of the most powerful neurotoxins known to man, it is essentially like nerve gas, so neuroinflammatory - repeated exposures cause neurological symptoms similar to nerve agents


The chronic inflammation puts stress on the nerves that the electrical impulses in the nerve become inhibited, and to compensate, the nerves thicken their myelin sheath to help nerve impulses and restore function 


For a long time, researchers assumed these neurological symptoms were close to multiple sclerosis (MS) - so with intracranial hypertension, neurological information from toxic mold exposure, where the physical damage perpetuates symptoms, like in Chiari Malformation where the brain is literally pushing itself out of the skull, opening pressure on spinal taps, and spinal fluid leaks


Erik thinks breakdown of ligaments and collagen contribute to neck problems in some CFS patients and is due to downstream effects of chronic inflammation over years - Erik's health did pretty good for a few years


Erik would also check wind direction to avoid toxic areas, and being down wind of them, in town - if he couldn't avoid these areas, he would shower and change clothes as soon as possible


By reducing inflammatory response and cytokine cascade, he's been able to live like a normal person - Erik had to find a home free of mold - he also built a camper out of mold resistant materials to drive around that had a shower in it


This allows him to decontaminate quickly - but in 1994 he slowly started getting worse - turns out it was neighbouring houses, the sewer - Erik got sicker and sicker and went to Dr Peterson


But Dr Peterson was too busy with his viral interests - Erik got worse, almost bed ridden again - Erik was diagnosed, again, with CFS with reactivated HHV6 - Dr Peterson said Erik's only option was the drug Ampligen, an experimental medication that pushes the immune system into high gear


Desert living


Some people have a spectacular response to Ampligen - but free Ampligen in the trial was only open to very sick / bed ridden patients - since Erik could still walk, he would only be eligible for the cost recovery program, but Ampligen cost about $60k / year and Erik could not afford that and his insurance company had canceled his insurance because he had CFS


Erik decided to try even harder to avoid mold, extreme avoidance and see if he could max out his health - Dr Peterson didn't think it would work, but since Erik couldn't afford Ampligen, what was there to lose - Erik bought a camper and drove it to the desert and spent as much time as possible in pristine environments and once again his health improved


Within 6 months of extreme mold avoidance, Erik was climbing Mt Whitney, the tallest mountain in connected USA, 13,500 feet high and a 25 mile hike - takes about 20 hours to climb


Erik thought that climbing Mt Whitney as a CFS patient avoiding mold would be impossible for researchers to ignore - but their reaction was 'how nice for you'


Erik says that mold is the common factor in all these clusters - but researchers don't want to investigate the mold aspect - he hopes one day we'll know why they are not interested 


CFS emerges after a trigger, usually a viral infection - researchers focus on the trigger as if it was the sole cause 


From the moment the CDC (Centre for Disease Control) announced they intended to collate the results, Erik began contacting CFS researchers and explaining he was the prototype patient for CFS, but he did not get one positive response


By the time the 1988 Holmes definition of CFS was published, Erik realized this was more than just a scientific endeavour, and more than documenting the toxic mold aspect, it was sociological research to see how researchers would handle a situation like this, and that's how Erik approached CFS research 


Erik created a standard phrase to see how doctors and researchers responded: "I'm an Incline Village survivor and prototype patient for the 1988 Holmes criteria, would you like to hear about it?" - never, not once over 30 years has Erik had a positive interest response, it is mind boggling


Confidentiality agreement


When Osler's Web came out, Erik already realized he was getting 100% negative response from researchers and no interest in following up on the Lake Tahoe outbreak - but Erik couldn't believe that on page 25, the Truckee teacher cluster - Erik's teachers - is clearly described - when Erik makes his assertion that CFS was never investigated, it sounds unbelievable - but those teachers told Holmes there was something in that school room


In Osler's Web, it talks about the disdain Holmes had for these teachers - on page 49, a couple of patients ambush Dr Holmes and explained about that school room and the infrequently changed air filters in that room and asked him to examine the air filters in that room


Turns out the filters did have the toxic mold SC - the school realized they had toxic mold and hired remediators to clean it up and the incidence of illness decreased - the school and its teachers, remediators, towns people and local doctors know about this - but not CFS researchers


Erik went to CFS symposiums and said he could take them to the locations and introduce them to the remediators who cleaned up the mold - Erik ran into a problem: the school authorities did want people to know about it, the teachers are fearful of repercussions so keep quiet - and the remediators said they couldn't disclose because they had a confidentiality agreement with the schools


So the only person who has no vested interest and willing to describe it is Erik - the remediation of the mold was in the newspapers - so clearing up CFS is simply doing some epidemiology research


Erik climbs Mt Whitney every year to celebrate his recovery - he posts about it online and how has helped other people recover from CFS - author Julie Rehmeyer is the most high profile person he's helped - she wrote an article for the Washington Post: What is CFS and why is more not being done to study this disease?


In the 2015 article Julie describes how none of the other treatments her doctor had tried had much effect - Julie heard about the extreme mold avoiders and decided to come to Incline Village and Erik took her the sick buildings - after a short period of mold avoidance her post exertional malaise symptom had disappeared and she was climbing mountains 


Media interest, but no researcher interest


So we have a direct intervention for CFS and it deserves research - but still, no researchers have looked into mold in CFS


SC has been studied quite a bit, but only known in the mold community, not in the CFS community - the CDC puts pressure not to research mold - they don't want this very expensive problem to come to public light


Because a lot of schools and public buildings will be affected - the CDC did its own toxic mold investigation in 1984 and found exactly what they didn't want to find and they buried that research through paralysis by analysis - but stated that nothing conclusive was discovered and more research is needed, but they didn't do it


Erik has returned to flying, a very expensive hobby, and mold avoidance is a very expensive therapy and includes avoiding sick buildings and immediately decontaminating if he is exposed - so that curtailed how much flying he could do, so he turned to mountain climbing and hiking - Erik does a ton of advocacy work around mold, and that doesn't pay, he hasn't made a dime


Erik goes to the ME/CFS conferences and tells his story to researchers as they take an active disinterest - like Hillary Johnson said, the politics is so compelling it draws you back in, its unique, and the sheer unbelievable, bizarre aspect that keeps sucking Erik back in - he can't believe this happened and the medical and research communities behaved in this way


Erik believes to fix the problem, it needs to be brought to light - the medical profession needs to realize they've committed an epic failures in their entire history - perhaps the embarrassment will force them to reconsider how they do business


Erik doesn't think any one will believe or understand this complex convoluted history until a movie is made about it - Erik's basic premise is that a researcher would want evidence, and so Erik developed a test


Back in the 1800s when Ignaz Semmelweis, a Hungarian physician in Austria, discovered that hand washing killed germs - he noted that the 2 health clinics had different mortality rates - the midwife's clinic had a very good success rate, but the doctor's clinic had an unbelievably high mortality rate from childbed fever (puerperal sepsis)


Money can't buy a ride like this


A pathologist doing an autopsy on a childbed fever death, nicked himself and he then died of the same illness - this suggested something, 'cadavers particles', had been transferred to the doctor through the blood - Semmelweis implemented hand washing with lyme / bleach and instantly reduced the mortality rate at the doctor's clinic - there were no autopsy's at the midwife's clinic


Semmelweis didn't know it was germs, but he didn't need to - he only needed to note that there was difference between the buildings and start to investigate - the history of CFS is similar: sick buildings making people sick


But no current researchers are investigating - in effect, there are no more Semmelweis - Erik has used the internet to get this info out and spending a lot of time in social media groups building up a following to put pressure on researchers and all this will come to light


Why does Erik keep doing advocacy? Hillary Johnson described Dr Cheney when he was in the middle of his fight with the CDC as saying "Money can't buy a ride like this"


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