Erik Johnson is an advocate for research into the biotoxin connection to the Holmes 1988 "Chronic Fatigue Syndrome.

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Recent episodes featuring Erik Johnson
Erik Johnson: Mold Warrior - Escaping Toxic Mold and Chronic Fatigue Syndrome and Exposing the Greatest Medical Error in History.
In part 2 of my interview with mold warrior Erik Johnson, he tells about the lengths he’s had to go to get and keep himself healthy. Erik terms his approach ‘extreme mold avoidance’ - and that involves a modified and mold-free camper vehicle, and also mapping, and then avoiding, areas and buildings with high levels of toxic black mold Stachybotrys Chartarum. Erik has been relentless in his efforts to bring awareness to the public, patients and researchers that toxic mold is an element of ‘chronic fatigue syndrome’.  Yet there is resistance by the Centre for Disease Control, by researchers, and by the medical profession, to consider or acknowledge how unseen toxic mold in our workplace, public and home environments may be making many people very sick. As you will hear Erik explain, there has been incredible pressure to hide the impact of toxic mold on human health. Erik also shares how the derogatory label of ‘chronic fatigue syndrome’ re-classified an entire illness from an ‘infectious illness’ diagnosis, to the ‘all in your head’ insult. SHOW NOTES Erik's Mold Map 0:05:15 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 0:06:00 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 0:07:00 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 0:08:00 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 0:09:00 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 0:10:00 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 0:11:00 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 0:12:00 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 0:13:00 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 0:14:00 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 0:15:00 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 0:16:00 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 0:17:00 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 0:18:00 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 0:19:00 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 0:20:00 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 0:21:00 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   0:22:00 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 0:23:00 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 0:24:00 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 0:25:00 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' 0:26:00 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 0:27:00 CFS emerges after a trigger, usually a viral infection - researchers focus on the trigger as if it was the sole cause 0:28:00 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 0:29:00 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 0:30:00 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   0:31:00 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 0:32:00 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 0:33:00 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 0:34:00 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 0:35:00 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 0:36:00 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? 0:37:00 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   0:38:00 So we have a direct intervention for CFS and it deserves research - but still, no researchers have looked into mold in CFS 0:40:00 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 0:41:00 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 0:42:00 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 0:43:00 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 0:44:00 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 0:45:00 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 0:46:00 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   0:47:00 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 0:48:00 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 0:49:00 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 0:50:00 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"       Connect with Erik Johnson:   Facebook: The Erik Johnson Effect   Twitter: @ErikMoldWarrior   ______________________________________________     Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com      Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk. Remedies Counseling - Making Life Better
Erik Johnson (part 1): Mold Warrior - Escaping and exposing the cover up of toxic mold in the creation of Chronic Fatigue Syndrome
Eight year old Erik Johnson figured out what was making him very ill: the building his family lived in. But instead of listening to Erik, doctors gave him a psychological diagnosis - ‘maybe autism’ they said. In part 1 of my interview with Erik, he shares how he got healthy through insight into his symptom pattern, and then developing and tweaking his own treatment protocol over the following years.  Erik also exposes the federal and local cover up of infamous illness outbreaks in Nevada. Erik tells how the Centre for Disease Control CDC) essentially invented the diagnosis of ‘chronic fatigue syndrome’ to explain the flu-like outbreaks. Mix in big egos, financial interests, and sensationalist media, and that led to words and concepts being twisted so that a physical illness was downplayed, and mass hysteria up played.The CDC then became complicit in psychologizing the illness in an effort to throw more confusion around the cause of the outbreaks. Meanwhile, Erik was doing his own investigation of the outbreaks and realized that not only was there a viral aspect to ‘chronic fatigue syndrome’, but that exposure to toxic black mold - specifically Stachybotrys Chartarum - was a necessary element. Yet, in spite of Erik’s - and their own - evidence, government and medical institutions did not want to research the role of toxic mold on human health. It is far less costly - for government, for health care, for the insurance and building industries - to label sick and disabled people as fakers and fraudsters, then to face the role toxic mold has on human health, and its implication in the emergence of ‘chronic fatigue syndrome’. SHOW NOTES Autistic? 0:06:40 Erik grew up in the Sierra Nevada Mountains, about 100 miles south of Lake Tahoe on a stage coach road in an old hotel that was a historic monument, unfortunately Erik had a terrible experience with toxic mold that made Erik very sick and could not recover - pretty much everything he's done is to get better from this toxic mold 0:08:10 In 1964 his family took over management of the hotel and Erik started to get nose bleeds, fatigue, blinding headaches, rashes, neurological problems - often resembling autism - he was in and out of hospitals, saw many doctors and none could figure it out - but Erik knew by getting away from the hotel he would feel better - in the summer he'd live in the buggy barn so his room was available for guests, so every summer he was like a normal kid with lots of energy - when he moved back into the hotel in the fall, he'd get sick again 0:09:10 Erik's family and doctor attributed his symptoms to psychological problems, developmental problems, suspected autism - Erik has been on a quest to find out how many others have been affected - in 1964 he read some Mark Twain books (including Roughing It) in which he describes this illness as people from the East moving for the Western cure in California or Nevada from what was then called 'consumption' - referred to tuberculosis or any kind of wasting disease 0:10:40 Erik thinks many of the 'consumption' patients suffered from toxic mold - a Mark Twain character moved West to die, slept under the stars, started to feel better and climbed mountains - Twain quipped that 'he came West to die and made a poor job of it' 0:11:40 Erik realized when he was outside, his health improved so it was obvious to him that it was something in the hotel making him sick - when they expanded the hotel and cut through a wall that was insulated with newspapers that were covered in black mold - because the papers were so old, Erik tried to read them but completely collapsed 0:12:40 It was clear black mold was causing his symptoms - Erik was 8 years old when he figured it out - so he spent as much time outside the hotel as possible, but had to move back in for the winter months - it was devastating for him - his family moved to Lake Tahoe in the late 70s 0:13:40 But Erik experienced the same symptoms in his new school, especially the entrance - most people knew something was wrong, it was affecting a lot of teachers and students, and they learned to avoid the front entrance - Erik graduated and was still sick - turns out his school would be ground zero for the emergence of 'chronic fatigue syndrome' - a cluster of teachers with rooms near the entrance got a flu-like illness, but could not recover     Toxic Mold in the Army 0:14:40 But the other teachers also got the flu, but they recovered - only teachers also exposed to black mold remained sick - it was Truckee School - subsequently a lot of work was done to clean up the school and it feels fine now to Erik 0:15:40 Erik realized he was being affected by a specific kind of mold no matter where he went - he thought joining the army would toughen him up by going through basic training with a physical life - he also wanted the adventure and hoped maybe the military would know how to deal with mold 0:16:40 Erik was overseas in a bunker built by Hitler - in 1976 the basement armory flooded and black mold grew on the cardboard and his entire unit got sick, including a couple of fatalities 0:17:40 The symptoms were the same Erik experienced in the old hotel - one guy who had hepatitis, it was reactivated and he died - several cases of cancer - they thought the staff sargeant had brain tumours and took him out on a stretcher and they never heard of him again 0:18:40 A swine flu hit his unit and made history because they were the first nuclear missile unit to be removed from active duty due to illness - it seemed obvious to Erik that the flu compounded with black mold exposure proved devastating 0:19:40 He would sneak out of the bunker at night to sleep outside - Erik got out of the army in 1978 because he couldn't face another situation where he had no control over escaping mold - he noticed a strange illness like his, move into the San Francisco Bay area 0:20:40 People would get the flu and not recover - Erik wanted to see if there was a connection to mold so he started going to their homes or workplace and indeed Erik would react to the mold - Erik had another black mold exposure and got very sick and couldn't function at work as a hang glider instructor 0:21:40 Erik was living in an RV and it got moldy - he was forced to move back in with his family in Lake Tahoe - his mother and brother physically carried him to a doctor's office, it turned out to be Dr Paul Cheney 0:22:40 Cheney took Erik's symptoms seriously but didn't have a clue to the cause - in 1984 Cheney suggested Erik go to a big clinic in Reno for testing - at the same time the worst flu they'd ever seen hit Lake Tahoe 0:23:40 The flu was so bad it got its own name, 'the Truckee crud' because it hit the town of Truckee before Lake Tahoe and Incline Village - when people didn't recover, Dr Cheney called the CDC (Centre for Disease Control) because a group of Truckee teachers all in the same room did not recover     Sick Building Syndrome   0:24:40 Erik suggested to Dr Cheney to look into the mold - at same time another school and a casino had outbreaks, and the viral aspect was given more import and that's what Dr Cheney wanted to pursue 0:25:40 Erik went to the other locations and could feel the mold - Erik considers mold to be an important co-factor in maintaining illness - the CDC came but toxic mold had not been discovered on in the medical literature at that time - without an explanation for the sick buildings, the CDC created a new illness 0:26:40 Problem was the Tahoe flu was so severe and made so many sick as Hillary Johnson describes in her book, the local Chamber of Commerce was being whipped out, in ruins, people were so scared they refused to come to Lake Tahoe, a tourist town, dependent on the ski industry - that disappeared, 1 of 6 businesses went bankrupt 0:27:40 People cancelled reservations, and Lake Tahoe became known as ground zero for this mystery illness - the Visitor's Bureau pressured the CDC to trivialize the outbreak so the tourists would return - this is why they chose the trivializing name 'chronic fatigue syndrome' and did not include any of the immune abnormalities - the NIH (National Institutes of Health) and Dr Stephen Strauss were interested in the Lake Tahoe flu 0:28:40 NIH is National Institutes of Health and control funding for health research - when this strange illness was spreading through the US in the 80s, it reactivated Epstein Barr Virus (EBV), the 'kissing disease' - 96% of population has EBV - but testing was very crude in the 80s 0:29:40 Basically only showed if there was an elevation in EBV antibodies - Drs Peterson and Cheney used this crude test and everybody came up negative, so it looked like EBV was ruled out for the Tahoe flu - but a new test became available and Drs Peterson and Cheney re-tested and found the patients did have elevated EBV antibodies 0:30:40 They called the CDC and said we erred, the patients do have EBV - Dr Gary Holmes said if this is true, the outbreak would completely re-write the profile of EBV because its acting contagious with a short incubation period - if it has mutated, needs to be researched 0:31:40 So the CDC was investigating if there was a new form of EBV causing the outbreak - people are confused about that, thinking the CDC was called for the mystery illness, but the CDC mission was very narrow re EBV - that's why they only wanted to look at the serology reports, not examine patients     Greatest Medical Error in their entire history   0:32:40 The results were confusing because some had elevated EBV but others did not - about 2/3 were a perfect fit for EBV, but 1/3 were not - Dr Holmes left and made an off-hand remark to a newspaper reporter that they were not seeing evidence of an epidemic 0:33:40 He was referring to an EBV epidemic, but the newspapers accused Drs Peterson and Cheney of creating hysteria - Dr Cheney told the newspapers the CDC was wrong and he's stand up in a court of law and prove it - an insult to Dr Holmes 0:34:40 So Cheney is fighting for his reputation, and Holmes feels insulted and refuses to return to Lake Tahoe - so 'chronic fatigue syndrome' grew out of a mistake, a misunderstanding of what Holmes of CDC was actually saying - Holmes acknowledged that people were actually sick - Erik said Holmes is one of the most maligned people 0:35:40 because the story got around that the CDC was trying to hide the illness - but that was not there goal at the time, that emerged later, but not due to Dr Holmes, he's actually a good guy 0:36:40 About same time, Drs Peterson and Cheney sent blood to another lab and they found a new virus: HBLV - Human B-cell Lymphotropic Virus and renamed a few years later as HHV6-alpha, Human Herpes Virus 6 Alpha - an especially devastating neurotropic virus that was observed to wipe out B cells, the exact opposite of EBV 0:37:40 This explained why patients were negative on the crude test - this is described in Osler's Web, the cytopathic effect - the CDC was concerned the HHV6-alpha was causing the outbreaks - same time as emerging AIDS pandemic - 'syndrome' was a scary word, associated with AIDS - so 'chronic fatigue syndrome' didn't seem so pejorative at the time 0:38:40 'Syndrome' signified unknowns to be investigated - but it became pejorative when paired with 'chronic fatigue' - as confusion spread, the fear of a 'syndrome' dissipated - it took about 6 years 0:39:40 Then 'chronic fatigue syndrome' became identified as middle aged women who couldn't get their life together - the media is responsible for 2 things: misinterpreting Dr Holmes, and propagating a negative narrative of CFS - the Holmes definition of CFS specifically excludes psychiatric disease 0:40:40 But somehow the medical profession overlooked this - it is probably their greatest medical error in their entire history - has impacted millions of people globally     Covering up an outbreak   0:44:40 In April 1986, Dr Cheney called Erik into his office and he was very excited with Erik's test results, saying it was incredible 0:45:40 Erik was now EBV negative - but Erik was disappointed because it was thought EBV was the driving force behind CFS, and could be treated with cyclovir - so that removed Erik's option for treatment 0:46:40 Dr Cheney explained that the CDC working hypothesis was that the illness is caused by EBV and it is being reactivated by lifestyle factors, alcoholism, smoking, drugs - a wealthy Chicago entrepreneur had a daughter who was sick with the illness and he was trying to stop the CDC from blaming EBV, and Dr Cheney was looking for proof that EBV was not a factor in the illness 0:47:40 Dr Cheney wanted Erik's blood, so Erik was the first prototype for the new syndrome by using Erik's blood to demonstrate EBV was not necessary, but HHV6 was, and it is a much more scary virus - so if the CDC really wanted to clarify, they would've named it HBLV (later called HHV6) disease 0:48:30 Initially Erik didn't want to be involved, due to time and responsibility, but Dr Cheney said he had to because Erik was the only patient from original outbreak that was EBV negative and had a duty to the patient community - Erik said he couldn't because he also had a mold problem but Dr Cheney said not worry about that now 0:49:30 Erik continued to be concerned that his mold problem would corrupt Cheney's data - it then occurred to Erik that if all these clusters occurred in moldy buildings, it means mold is a critical factor in the illness, not a confounder - Erik agreed to participate on that basis 0:50:40 Erik didn't realize that no researchers would ever come back to investigate the outbreak - and the CDC was not interested in the mold / sick building factor - the CDC used the confusion to bury the Lake Tahoe outbreak, and keep it buried 0:51:40 For about 4 years the CDC wasn't sure it would work because it would just take one epidemiological researcher to find the truth - by 1992 the CDC saw the trivialization had worked perfectly so started working on their Fukuda definition of CFS to replace the Holmes definition - but why bother? The description and criteria was very similar. What was the point? 0:52:40 The point was that the Fukuda definition wasn't based on a scary outbreak that could be identified - the whole point of redefining CFS 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 was clear that psychiatric must be excluded   Part 2 of Erik's interview coming soon.   Connect with Erik Johnson:   Facebook: Erik Johnson Effect   Twitter: @ErikMoldWarrior   __________________________________________________________________________   Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month. Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com  Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com      Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life. Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions. Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk. Remedies Counseling - Making Life Better Have you had traumatic experiences with the health care system? Are you living / struggling with a chronic illness?  Do you need a counsellor with proven expertise and experience to make life better? Book an appointment with Scott online at RemediesCounseling.com RemediesOnlineCounseling@gmail.com
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Stats
Episode Count
2
Podcast Count
1
Total Airtime
1 hour, 48 minutes