Casualties Of Omission
“I’ve been thinking of taking my act to Las Vegas because I can do magic. I can make a researcher disappear. All I have to do is come up and announce myself. Hi, I’m Erik Johnson. Then boom, gone like a puff of smoke.”
For the past thirty-five years, Erik Johnson has run covert educational sessions on the perimeter of his former high school in Nevada. Tahoe-Truckee High is the site of the ‘Donner Memorial’, dedicated to one of the most harrowing tragedies in Californian history, when in the 1840s a pioneering wagon train, trekking across the western plains, became trapped by snow. Faced with starvation, they allegedly cannibalised the dead. However, according to archaeological evidence and testimony from the descendants of the native Paiute, the pioneers were not victims solely of the Californian elements. Sarah Winnemucca, granddaughter of the Paiute chief, was there, and she recounts in her book that the Donners tracked them back to their food cache and burned their entire winter supply of food. In retribution, the Paiute killed the Donner’s cattle with poisoned arrows, rendering them inedible.
Johnson says the narrative has been distorted by selective omission. “Just leave out something really critical to the story, and it totally alters people’s perspective.”
Tahoe-Truckee High is the site of a second selective omission which occurred in 1984, and the very reason Johnson has amassed a following of hundreds of ill people who make the pilgrimage to see and hear how it all began. And why Johnson refers to this site as ‘Ground Zero’.
“Twice now — history altered by an omission,” Johnson says. “And a conspicuous lack of effort to correct it.”
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The north shore of Lake Tahoe is a picturesque place. It’s “paradise”, according to Johnson, who has lived in the area his entire life. From its lush woods to its views of the canyons, snow-capped alpine ski trails, and friendly neighbourhoods; the region is almost too good to be true. Its sandy beaches, mountainside cabins, and pristine lakeside charm belie its controversial history. “It’s hard to believe, looking at this beautiful setting, that anything bad would have ever happened here,” Johnson says.
It was the winter of 1985 and 10 teachers at Tahoe-Truckee High School had been permanently assigned to a small staffroom on the first floor, near the principal’s office. The airless teachers’ lounge housed two photocopy machines, and a newly installed heating system recycled warm air into the room, rather than drawing in fresh air. School administrators had mandated that all the windows stay closed. Six hundred students were crammed into the ageing school building beneath them.
Over time, nine of these teachers complained of swollen glands, night sweats, sleep disturbance, inability to concentrate, difficulty finding words, joint and muscle pain, cough, light sensitivity and weakness. They waited for their flu-like illness to pass, but it never did. One teacher, assigned to the room, had felt so uncomfortable in there he had driven off site to a nearby parked camper trailer for lunch and lesson preparation, and his health remained intact.
Local doctors Daniel Peterson and Paul Cheney ran a busy medical practice. Their office, situated across the road from the hospital, serviced patients with mild medical complaints. What was once a simple caseload turned into a slew of complaints: dizziness, shortness of breath, achy joints, rashes and chest pain. The doctors speculated the problem might be infectious mononucleosis, also known as glandular fever. In January 1985, the doctors’ published working theory connected the dots between the Epstein-Barr virus (EBV) and persistent fatigue. However, not all the patients were positive for Epstein Barr — the virus that causes mononucleosis and mononucleosis is rare in adults. In addition, Epstein Barr Virus doesn’t cause epidemics because it has an incubation period of over a month.
Peterson and Cheney called the director of the Washoe County Health District to report a possible ‘outbreak’, but they were met with disinterest. When they finally made contact with the “Centers for Disease Control” (CDC), the response was similar. Never in history had there been an epidemic of adult mononucleosis.
The CDC found abnormally high levels of EBV in the blood samples from Tahoe and was compelled to dispatch an investigator. A 26-year-old Epidemic Officer, Gary Holmes, was selected. He’d only been with the CDC for four months. When he and Jon Kaplan finally departed Atlanta for Tahoe, it was Holmes’ first field trip.
The investigators were in Tahoe to figure one thing out: had an outbreak of chronic mononucleosis syndrome occurred? Holmes and Kaplan spent a day climbing a mountain, examined patients’ charts and didn’t ask to meet the patients in person. Two members of the Tahoe Truckee cohort Gerald and Janice Kennedy revealed their concerns to the investigators. The fumes from the copier machine toner were worrying, as were the air filters in the staffroom’s heating system — which were not regularly changed. Their concerns were met with indifference.
After one week, Kaplan returned to the CDC Headquarters in Atlanta, and two weeks later Holmes departed. The Tahoe Daily Tribute reported in October 1985 that the CDC “researchers left with more questions than they could answer.”
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Erik Johnson was born in 1956. He had suffered from a mystery illness since 1964, with onset at age eight. Raised in the old hotel his parents ran, Johnson recovered his health only in the summers, when he slept in the barn, to free up room in the hotel. When one of the walls was knocked down during renovations, it became apparent that the insulation was century-old newspaper covered with black mould. Upon touching the newspaper, Johnson collapsed.
A decade prior to the outbreak of 1984, Johnson had become a patient of Dr Cheney’s. Countless doctor visits had left him despondent during his childhood. His blood results were always in the normal range.
Johnson had been aware of the mould problem at the Tahoe-Truckee High School since he was a student there in the 1970s. He says he had consistently avoided using the front entry to the school, because a mouldy carpet there caused him to feel unwell. The earlier newspaper episode at his parents’ hotel had been the first clue that he was sensitive to mould. His need to use the side entry to the school was the next one.
Another clue revealed itself when Johnson joined the army after graduating from high school in 1975. There, he was sent to a bunker in Germany, where he trained as a nuclear missile launcher, and was taught to identify hazardous biological warfare substances. A flood in the basement armoury, combined with not enough ventilation, resulted in growth of black mould. After being tasked to remove the mouldy cardboard boxes, and not being allowed to wear a mask, Johnson collapsed.
Johnson returned to Tahoe and turned again to Dr Cheney soon after becoming aware that the Tahoe region was enveloped with a mystery illness. Clusters other than the teachers at Truckee began to appear in the Tahoe area during the 1980s. There was a second teacher cluster at North Tahoe High School. Local newspapers ran a story on a leak which had created a colony of mould in the wall. There was also a staff cluster of five at the Hyatt Casino and a cluster at the Incline High School girls’ basketball team.
Johnson wondered how a flu-like illness could go from being non-infectious to wildly contagious. He noticed that the vulnerable were not all immune-compromised. Instead, the illness affected teachers and children and sporty people. Johnson realised that patients who didn’t recover were spending time in mouldy areas. He suggested to Peterson and Cheney that contagion might occur when people were in the early shedding phase of the virus and also in the presence of a mouldy building. The Truckee High teachers’ lounge incident, he decided, was an example of this phenomenon and warranted further scrutiny. There would have been other schools with mouldy staff rooms in history, but Johnson saw that when mould destroys the terrain, viruses take over. Doctors Peterson and Cheney were resistant to Johnson’s hypothesis.
In 1985, Johnson decided to contact the one teacher who had escaped illness at Tahoe-Truckee High School. But when he asked the other teachers, “Who was that? Can you put me in touch? They refused to tell me. Dr Peterson, who was focused purely on the viral cause, got so upset with me he told the entire original cohort, ‘Don’t talk to Erik. Do not communicate with him anymore.’” Fearing that it might exclude them from treatment, they felt they had no other option. The other doctors in town were still referring to their illness as one of hysteria and depression.
When Johnson asked his teachers to go on the public record about the staffroom, they declined. “‘We can’t do that. Doctor Peterson asked us not to,” Johnson recounts. Dr Peterson, he says, had “wanted to control the investigation, to have everybody focused on the viral cause. He felt environmental factors were a distraction.”
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After the CDC left Tahoe, remediation efforts began at Tahoe -Truckee High School. News of the clean-up appeared in the Sierra Sun and The North Tahoe Lake Bonanza. GeoMatrix of Sacramento and Restoration Consultants were the remediators. Johnson says, some of these buildings “felt safe to hire environmental specialists to come in — who identified mould and cleaned everything up, to remove all traces of what happened.” The remediation report from Tahoe-Truckee High School was never made public. When Johnson made contact, he was told, “When they hired us, it was under a confidentiality agreement.”
According to Johnson, the janitor, who cleaned up the mouldy carpet in the staff room after remediation, also became unwell. “His daughter told me he became too ill to work,” Johnson says. “Never recovered and eventually died.” Johnson observes that prior to 1994, Hazmat Protocols were non-existent and so no personal protective gear was involved in cleaning up mould. The concept of ‘toxic mould’ was not yet entered the medical literature. It was understood solely as an allergen then. “They really did not have any idea that remediation could be deadly,” he says. “Stachybotrys was not known then as neurotoxic black mould which “possesses the exact properties necessary to suppress immune system, cause neurological damage and leave somebody, even a healthy normal appearing adult, so immune compromised, that these other infections can jump in and get a foothold.”
In March 1986, 90 Tahoe locals attended a panel on the mystery illness. By that point, there were 160 cases in the area. The North Lake Tahoe Bonanza quoted Dr Cheney as stating that Incline High School was unaffected by the illness “because of its circulating air system, large windows and overall good ventilation and airiness as compared to internal circulation.”
With the teachers from Tahoe-Truckee High still not recovered by 1987, they launched a lawsuit against the school for environmentally induced illness caused by the effects of the toner chemical. Johnson says they won their case and the chemical itself, not mould, was the focus.
Kaplan returned to Atlanta to convey to the CDC that the North Tahoe outbreak was a sham. Holmes told the Sacramento Bee in October 1985 that “There is little evidence that mono occurs in outbreaks. It’s pretty unlikely that this many people had mononucleosis.” He also told the Bee that he had found “no evidence” that the illness was “highly contagious”. The Reno Gazette then ran a story headlined “Health Officials Dismiss Mystery Disease at Incline.”
Holmes drafted a three-page letter stating: “We do not think we will be able to conclude whether an outbreak of excessive fatigue, or of chronic Epstein Barr Virus infection, occurred in Incline in 1985.” He postulated that if anything had occurred, it was an “epidemic of diagnosis”. Holmes’ superior, Virologist Stephen Strauss, referred to the illness as a disease of “depressed menopausal women”. The press were quick to pick up on this sentiment, and soon the Tahoe mystery illness was being referred to around the country as “Yuppie Flu”. The CDC was silent.
In 1987, Nevada Senator Harry Reid told the press that more resources needed to be committed to investigating the Tahoe outbreak. Soon after, the CDC created a task force. Dr Cheney urged Johnson to volunteer as a prototype for the Holmes study group of this new syndrome. Cheney recruited nineteen Epstein Barr negative patients, all of whom still displayed all the symptoms of the EBV syndrome. He determined to prove that Chronic EBV Syndrome was not the cause of the illness. “He said you are the only member of the original outbreak. Your story, your participation, is more compelling because you were part of the Tahoe flu outbreak of 1985.” Johnson was initially unenthusiastic, but he agreed to take part, hoping that his involvement might spark researchers’ interest. His primary goal was always to put the environmental clues into the hands of top researchers.
The 1987 Holmes Committee arrived at a consensus regarding the features of the new syndrome and named the new syndrome ‘chronic fatigue syndrome.’ They adjourned, and no one from the CDC came back to Tahoe. To this day, Johnson says that the omission has become permanent, and no researchers have returned “to straighten up what CFS really was: A powerful flu-like illness plus a powerful neurological agent of toxic mould.”
Johnson says that three myalgic encephalomyelitis (ME) literate physicians, Byron Hyde, Gordon Parish and Alexis Shelokov, attended the CDC’s Holmes Committee. He says they explained to Gary Holmes and the committee that the Tahoe outbreak was a typical outbreak of ‘ME’. “So, what the Holmes committee was naming ‘Chronic Fatigue Syndrome,’ was, in their opinion, already identified as a typical outbreak of ‘ME.’” ME is a term derived from the 1934 atypical polio outbreak at the Los Angeles County General Hospital, where 198 employees came down with neurological illness. Because a poliomyelitis epidemic was occurring in California, the illness was, at first, considered to be an outbreak of atypical polio until significant deviations indicated it was not. Since then, there have been more ME documented outbreaks which were also frequently correlated with outbreaks of polio. This same illness was referred to as Akureyri Disease or Icelandic Disease in the 1940s and 1950s. It was then renamed ‘myalgic encephalomyelitis’ (ME) after London’s Royal Free Hospital outbreak in 1955.
Johnson says the ME literature physicians at the Holmes Committee were mistaken in asserting that the Tahoe outbreak was ME. There was more to the Tahoe outbreak, he insists, because “They found the new HHV-6 virus, they found altered lymphocyte ratios, they found the low natural killer cell function. If they were to call it ‘ME’, that would be like saying, well, all these things applied to ME and they didn’t know it yet.” Johnson also highlights that the 1934 Los Angeles ME outbreak “was known to be caused by an experimental polio serum inoculation taken from people who had a weak form of the virus”. The Royal Free Hospital outbreak, he says, did not involve serum inoculations, like the 1934 one did, but it did take place during a polio outbreak. Lake Tahoe had neither of these factors, Johnson says. “So none of these were the same.” Still, Chronic Fatigue syndrome is regularly referred to as ME/CFS.
The year after the Chronic Fatigue Syndrome was created by the Homes committee, the Healthy Buildings Conference took place in June 1988, in Stockholm, Sweden. A cluster of medical personnel had fallen ill at Quebec City Hospital. Researchers, Mainville and Auger et al. pinpointed the reason for the cluster of illness as toxic mould. This conference marked the first mention to a World Health Organisation sanctioned body of researchers that the ‘Lake Tahoe mystery illness’, recently renamed as ‘Chronic Fatigue Syndrome’, might, Like Quebec City Hospital, be from Stachybotrys mould. Prior to this, stachybotrys as toxic black mould had not yet not entered the medical literature. Instead, mould was recognised only as an allergic substance. This paper, titled ‘Mycotoxins and Exhaustion Syndrome in a Hospital’, connected the Quebec City Hospital Outbreak with the Lake Tahoe chronic fatigue syndrome. In both cases, Johnson says, it appeared that “This inability to recover after an exposure to a sick building was caused by stachybotrys.”
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By the 1990s, Johnson’s health continued to decline. In 1994, he moved to another house, and his health deteriorated further. He was having problems with all kinds of chemicals. By 1997 Johnson was non-functional again. In 1998, Johnson had been ill with “Chronic Fatigue Syndrome” for 13 years and was on the verge of suicide. He returned to see Dr Peterson, where he was offered the experimental treatment, Ampligen, but at $60,000 a year, he couldn’t afford it and didn’t qualify for funding. His health insurance had been cancelled following his Chronic Fatigue Syndrome diagnosis.
“I was at a dead end,” he says. Johnson recounts that when he asked Dr Peterson, “what do people in my position typically do?” he responded, “people at your level of illness typically commit suicide.” Johnson decided he had nothing to lose by concentrating on the clues and avoiding mould. When Johnson told Doctor Peterson about his plan, the response was, “You’ve already got viral reactivations. It’s too late. I don’t think it’s going to work”.
Johnson sold his house, which he had discovered was mouldy, and began living in an RV with a shower which he called a ‘mobile environmental containment unit. Leaving the mouldy area wasn’t enough for him to feel better. He took numerous showers a day, each time he felt an unpleasant sensation to stop the immune system from overreacting. Johnson worked to protect his safe zone, just as the military had taught him to do. He kept contaminated clothes and objects out. The mould on his clothes would keep the inflammatory response going.
Once he regained the ability to drive, Johnson spent time in pristine, rural areas, where he continued to regain his strength. Within six months of extreme mould avoidance, by the summer of 1999, Johnson climbed Mount Whitney, the tallest mountain in the United States. He thought this very act would be impossible for researchers to ignore. Nevertheless, there was no interest. Johnson then repeated this same climb annually for the following ten years to show that his recovery from chronic fatigue syndrome was not a one-off and hoping researchers would notice and ask him how.
Johnson describes himself as “a witness to history and an observer to a mould phenomenon that needs investigation.” He has devoted the past thirty-five years towards raising awareness of the environmental clues. He does this by posting on chronic fatigue support groups, and on his social media. Johnson attends medical symposiums with evidence displayed on a poster to show researchers and advocates who “regard environmental illness as a completely separate issue. As far as they’re concerned, ME / CFS are virally induced. End of story.”
The notorious staffroom in Truckee is no longer there. Johnson says that the evidence was disposed of three years ago.
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Was it incompetence or maliciousness that led to the CDC and medical researchers to focus only on the virus, while ignoring the environmental clues? Johnson says it’s neither. It’s the “blind faith in their peer reviewed literature that blocks progress”. Despite the clues, Johnson says, the medical community “Throw out the actual evidence because they hadn’t done a ‘study’.” This interest in studies rather than peoples’ lives, he says, has caused decades long immeasurable suffering and loss of life, because sufferers cannot gain access to this information. “That’s the most incredible part of this whole story.” Johnson says. “The medical profession, the people that we trusted, the people we thought we’re going to help us, or the very ones suppressing this for so many decades.”
Johnson says he is shocked and disappointed that the guardians of national health have shown no interest in the details of the very syndrome they study. “Anyone claiming to be a CFS researcher has the scientific duty to ask, “How and why was this syndrome coined? What was it for? If he would look into CFS history, he would know what was known. And it wasn’t ‘nothing’. I am amazed that without looking, they have the ‘right’ to just start going around saying ‘Nothing is known’.” Instead, he says the medical system is based upon “Peer pressure. It is competition. It is power grabbing. It is defending their own hypothesis and when something new crops up that doesn’t fit their conceptual framework, they actually fight so hard to beat it out of existence, there are wiping out all the very clues that they should be looking at.”
Johnson says that since he is not a medical professional or medical researcher, the information he shares has not been seen as ‘credentialed’ and is therefore of no interest. This, despite the fact that he was a first-hand observer and participant in the very phenomenon they studied.
Frame of reference, Johnson says, is key to understanding why this information continues to be overlooked. “Society becomes so convinced, so indoctrinated into a frame of reference, they leap to defend it and don’t stop to think that maybe their theory doesn’t quite fit the facts.”
Johnson says history is littered with cases of those who suppressed evidence and turned away from new information which was later accepted. “Doctors have this God complex. No matter what, they will try to say that they have the answers even when they don’t. Like with the Helicobacter Pylori — famous story of the discovery of ulcers caused by bacteria. And look what doctors did. They stomped it out by saying they were so certain that ulcers were stress and they knew everything there was to know.”
This phenomenon, Johnson says, is compounded by the method by which medical professions are selected by profession. Sir William Osler, the Canadian physician who founded Johns Hopkins, warned of the danger of the medical selection process. This process, he says involves, “Filtering out, weeding out the artistic, creative type of person, who’s actually the freethinker, the best healer. Instead weeding out people who are just good at reciting facts and figures.” Johnson notes that this valuing of someone’s aptitude for rote memorisation, ability to recite facts and figures on cue, and blind faith in the sanctity of peer reviewed literature culminate in a harmful system. Johnson says, Osler warned about “People who are so close-minded that they are dedicated to defending their own beliefs and would allow nothing new to enter and that is exactly what is coming to pass.”
Over the past 35 years, Johnson has faced the same disinterested response from CFS researchers and doctors. “I think we need a sociological investigation of the academic mind,” he says. “There’s something seriously wrong with these people. How could they see such a good clue and not take interest in it? Why would anybody do that? No researcher has ever looked into chronic fatigue syndrome, not one. They dropped the investigation at that point and spent the next 35 years saying we don’t know anything, never asking anything.” What bothers Johnson most, he says, is the top CFS researchers “Complete unwillingness to even discuss that there were overlooked clues.
Another crucial clue, Johnson says, has also been disregarded. An Incline village housewife, Bonnie Bennett, detected an unusually high prevalence of multiple sclerosis in her Tahoe vacation townhouse complex in 1982. Her husband was seriously ill. Johnson explains that “Multiple Sclerosis was very rare in the population at the time. So to find several people in her same complex diagnosed with multiple sclerosis was statistically impossible.” Bennett, with no medical background, explored medical books in the library, then contacted the world’s more experienced tick-borne disease expert Doctor Willy Bergdorfer who offered to help.
Bennett suspected that her husband and neighbours had Borrelia Hermsii — transmitted from chipmunk ticks which imitated MS. She wrote to the CDC about her concerns, but her letter was met with disinterest. After Bennett arranged for the Arizona Republic newspaper to run a story about tick-borne relapsing fever and the connection to MS, she received a letter from the Washoe District Health Department. The county representative enclosed a copy of the March-April 1984 Washoe County District Health Department EPI-NEWS, which described an outbreak of tick-borne relapsing fever in the Tahoe basin at the same time as the mystery illness. They had mailed this same newsletter to local physicians. Bennet later wrote a book where she insists that tick bites caused the Lake Tahoe mystery illness epidemic. Erik Johnson says that Bennett notified Cheney and Peterson, “Still, nobody ever looked further into it. Just like the mould, the Lyme disease was totally ignored, suppressed and forgotten. They don’t know what to do about it, so they simply ignored it. They issued it in an obscure paper to local doctors, and it completely disappeared.”
Johnson does not refer to himself as a ‘mould advocate’ or a ‘CFS advocate’, since he receives opposition from both communities. Instead, he sees himself as a witness to the suppression of evidence of the past by the medical community. When Johnson reached out to sufferers in the chronic fatigue community to tell them the clues that were missed in creating this syndrome, they met him with resistance. He puts this down to cognitive dissonance and “blind trust and faith in the medical profession that they are going to protect the community.” Johnson says, “I thought that once they started seeing the benefit of mould avoidance, recovery stories of people who go all out and get so much better, that this will kind of shake them up a bit. And I’m surprised that they’ve been so resistant and that our stories haven’t had the effect we hoped they would. All you need to do is recognise Chronic Fatigue Syndrome is an environmental injury.”
One decade later, in 1994, researchers Alexander Chester and Paul Levine concluded in Clinical Infectious Diseases , that the cluster at Tahoe-Truckee High School was similar to classic sick building syndrome, but with a viral component. This correlated with the staff room occupants coming down with ‘Chronic Fatigue Syndrome. Johnson says, “As you saw in the Chester Levine article or the abstract, they said that these clusters are not sporadic EBV. They occur too quickly. There’s too many people, and they’re all in the same building, they’re in the sick buildings”. The researchers concluded that “the link of chronic fatigue with sick building syndrome suggests the possibility that the agent(s) responsible for the traditional symptoms of sick building syndrome may also trigger CFS.” Chester and Levine also emphasised that “Epistemological studies clearly implicate the workplace”, thus discounting earlier suggestions of ‘mass hysteria’.
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The Australian chronic fatigue syndrome (CFS) guidelines have not been updated since 2002. They are based on the findings of the CDC Holmes Committee findings.
Emerge Australia, a national education, advocacy, research, and support service, reports that there are over 250,000 Australians with ME/CFS. Twenty-five per cent, which equates to over 60,000 people, are housebound or bedbound and dependent on carers. For most people, they say, ME/CFS is a lifelong condition. A return to pre-illness functioning is rare and estimated at five to ten percent.
Emerge Australia states that the cause of chronic fatigue syndrome as ‘unknown’, but several factors may be involved: viruses/infection, environmental toxins, physical trauma, genetics, physical, mental or emotional stress. The management of the illness is listed: “With no known cure or treatment options, management of ME/CFS aims to reduce symptom severity. Pacing and rest are the most effective ways to manage symptoms.
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In 2020, the National Health and Medical Research Council (NHMRC) allocated $1.08 million to Professor Ken Walder for a five year ME/CFS research project in conjunction with Barwon Health. At the time of receiving the grant, Professor Ken Walder had no experience in chronic fatigue syndrome, so he says he was surprised to be awarded the funds.
Walder is the chair of metabolic diseases, Co-Director and Theme Leader of the Novel Treatment Discovery team at IMPACT at Deakin University. The focus of IMPACT, Walder says, is mental health. Walder works mainly on drug repurposing for mental health disorders, such as bipolar disorder. He has also worked extensively in diabetes research. In October 2019, Professor Walder saw a targeted call for research into Myalgic encephalomyelitis/chronic fatigue syndrome in the NHMRC’s weekly newsletter. After submissions were peer reviewed by an expert panel, the NHMRC funded three applications. Professor Walders’ application title was ‘Using ‘omics to unravel the pathophysiology and repurpose drugs to treat ME/CFS.’
Walder thinks his grant submission was successful because “in my lab we basically built a platform to repurpose drugs for any common complex chronic disease. We looked at it and saw well our platform will work in ME/ CFS just as it works in the other diseases and we’ve proven that it works, so put in a grant and much to my surprise got awarded funding from the NHMRC, even though I had no track record in me CFS.”
“I’m not an expert in ME/ CFS. I only started working on it two years ago,” he says. “So I don’t claim to be an expert. But I have learned a bit in the last couple of years because I’ve really been actively trying to learn.” “I’ve spoken to primary care healthcare workers, who don’t believe it exists. And I remember one GP said to me ‘I’ve never diagnosed someone with ME/CFS because I don’t see how that will help them. There’s no treatment for it.’ And that was very early on and since then I’ve learned a bit about the disease.”
Prior to receiving this research grant, Walder says his attitude was “Okay, people are tired all the time. Can’t do everything they want to do. But when you talk to people who’ve got the disease, it’s just so much more than that.”
Walder says part of the reason he knew so little about ME/CFS is that “It’s not mentioned once in the medical school curriculum”. In addition, “If you go to the research literature, the medical literature, there’s hardly anything about ME/CFS.” Professor Walder says he was not aware of the history of the Chronic fatigue syndrome, and that he is keen to learn more about it. “Thanks for the history of ME CFS,” he says, “because I hadn’t looked into it and now I know more.”
“My feeling about the biology of ME/ CFS is we’re really just scratching the surface, and we probably don’t even know what we’re looking for yet. I just don’t think we’re looking in the right place because we don’t know where to look.”
“There’s certainly an environmental component beyond the viral infection in the first place. That’s almost the case with every chronic complex disease.”
Walder says that the Institute is still at the recruitment phase and so “we should be finished recruiting by the end of this year so we haven’t done any formal analysis of what the bloods we’ve collected.” The funding to date is for research only, and additional funding will be required “The next step is to get funding to do a clinical trial, and if the clinical trial shows a positive effect, then that’s a different ball game, because then we need to get to clinicians,” Walder says that based on historical minimal funding of ME / CFS, this may be difficult.
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Former Australian rules footballer Alastair Lynch became ill shortly after he left his Australian Football League (AFL) team, the Fitzroy Lions in Melbourne. He moved to Brisbane after signing a contract with the Australian football league team (AFL), the Brisbane Bears. Lynch says he had been healthy his whole life up until that point.
In October 1994, at the age of 26, Lynch contracted a mystery virus and was later diagnosed with chronic fatigue syndrome. It had been a big year for Lynch. He had suffered a home robbery, moved states, had a knee operation, broken his collarbone and experienced a death in the family. “So I suppose I was in a position where maybe I was susceptible to illness or certainly fatigue”
Lynch was sidelined from his football career for the entire 1995 season. His public battle with the illness saw him become a public figure for ‘Chronic Fatigue Syndrome’ in Australia at a time when it still lacked credibility.
Lynch became ill after returning from the Great Barrier Reef, where he had joined his new teammates for a drinking bout as was customary to close the season. Two days after returning to his apartment overlooking the Brisbane river, Lynch slept eighteen hours a day. He says a burning fatigue enveloped him. “It was like running 40 k’s on hot concrete in bare feet.”
Lynch recounts how, through a long process of elimination, he was diagnosed with post viral syndrome. Frustrated, by a lack of diagnosis, he was desperate for doctors to find something wrong with him. “You want a name and you want something to fight, and with the unknown, that was the hardest thing — ridiculous thing, you’re going in for these very serious tests and hoping that you had something so that you can say, righty-o now let’s take it on.” Lynch says that when he did finally receive a diagnosis it brought only temporary relief, which soon turned to further frustration. “I instantly thought, great. Now it’s got a name, which I was after. Now we can fight it. There weren’t a lot of answers out there, wasn’t protocol medication that was proven to fix things, so that sort of joy certainly turned into a bit of despair in the end when searching for answers all over the place.”
Armed with a diagnosis, Lynch sought a treatment plan, but during a doctor’s visit, his diagnosis was dismissed. “And the first thing he said, ‘I don’t believe in chronic fatigue syndrome’.” Lynch responded, “I don’t know anything about it either. I don’t care what you call it. I’ve gone from being super fit at 26 to can’t get out of bed at 27. I don’t care what you believe in. If you can fix me, that would be great.”
Desperate to regain his health, Lynch tried a range of conventional and holistic treatments such as ice baths, chiropractic, herbs and acupuncture. “There was mild antidepressant treatment to help get a better quality of sleep.” Lynch took rotating antibiotics for twelve months, on the Cecile Jadin protocol, through the University of Newcastle. He doesn’t know if this protocol, for infectious diseases like rickettsia helped or not. In addition, he was never diagnosed positive for Lyme borreliosis, and is unsure if his doctors ever tested for it.
Lynch recognises that, unlike others, he was privileged because of the backing, infrastructure, and networks which come with belonging to a high-profile sporting club. The Brisbane Bears had only just signed a long-term contact with him when he was diagnosed with chronic fatigue syndrome. He says both he and the club were told “There’s no cure. We don’t know whether it’s real.” Still, Lynch says that “The club almost had to believe me. So they did everything they possibly could to support me”. He recognises that in additional to medical and professional support, he also received support from his wife. “I do hear some other stories that aren’t so positive. But I was very fortunate.”
Lynch had slept 18 hours a day when he fell ill, but after returning to football, “I struggled to sleep really at all. So I needed assistance to get to sleep.” Eight years after becoming unwell, in 2002, at the Grand Final, Lynch was in possession of the ball when the final siren sounded. It was the Club’s first Premiership in 57 years. Later he took part in two more Grand Final wins.
In 2005, Lynch co-authored his biography Taking Nothing for Granted. Retired from football since 2004, Lynch continues to share his experience to raise awareness of CFS. He is now a commentator for Fox Sports AFL channel, Fox footy, and a Director of Health and Wellbeing company Healthy Business, which focuses on assisting people on industrial sites to manage their fatigue levels.
Lynch, who had not been told about the history of chronic fatigue syndrome, says he never considered mould or biotoxins as a factor. It was never investigated at the time, and we will never know if it was a factor in his illness. He says, “We moved whilst I was sick and my wife and I were planning to build a house and I got ill. So we were in that apartment for 18 months. When I was at my worst was when we were trying to build a house and so she’s done most of that and had to care for me and work as well. We moved to another house and lived there for about 8 years and then we moved again.”
Lynch recognises the downsides of the location of the apartment he lived in during the worst of his illness. “Being on a busy road as well, with the sun in Queensland in the summer coming up at 4:35 or something ridiculous, having poor curtains which probably destroyed my quality of sleep as well. So actually getting to a better environment in a quiet suburb, rather than one of the busier roads in Brisbane, no doubt helped. So moving coincided with my improvement in health, not straight away. But yeah, I can see that the location wasn’t ideal when I was still sick.”
“At 26 I hadn’t had any major health issues. I was lucky with health and fitness and sports and so I just took my health for granted, until it was taken away and what I’ve come out of it with is your health is, its’ an amazing thing. But its’ pretty fragile.”
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Thirty-eight-year-old Adelaide resident Robyn Jones was diagnosed in 1994 at the age of age ten in England. She caught glandular fever at age six, and never recovered. After moving to Australia seven years ago, she says, her illness was referred to as chronic fatigue syndrome in her new country.
Jones wrote her book, ‘Welcome to ME between 2010 to 2014. “I thought I need to get the confusion, that anger… and all that stuff out. I’m just going to put it onto paper.” The book, she says, is based on her childhood “When I was eleven, I was so confused and upset,” she says. “I had suicidal thoughts, and I just wanted it to go away.” Because she could only attend school sporadically, “A lot of people thought it was school phobia. I changed schools because my parents were told, change schools, and obviously that didn’t work. There were a lot of people at that time that didn’t necessarily believe I was ill”.
At age thirteen, Jones was bed bound for four months. “I was so weak I would choke on a glass of water. I didn’t have the energy to swallow. And then, by the time I was eighteen, I was thinking, I wanted to go to uni. But I wasn’t quite well enough. But at nineteen, I was able to do. So I went off to another city. University for eighteen months, and then it was too much, and I had to go home again”.
Jones says her experiences with the medical fraternity have left her traumatised. “I’m very wary of doctors,” she says. “I’ve met some pretty mean ones. So I generally don’t really talk about it unless I have to”.
Jones notes that the climate in Australia has been good for her. She also finds living out of the city, in the countryside helps her, as does fresh air.
Jones has never been told about the history of the creation of the chronic fatigue syndrome. She recollects that the possibility of her illness being an environmental illness was touched on briefly in support chat groups, but was never investigated. “Being part of this charity, they were trying to look into all these things. So there were things like that, and farming chemicals. I’m a farmer’s daughter, so you know that was touched on. Maybe it could be from something in the environment.” According to Robyn, no doctor she consulted ever suggested mould as a potential factor in her illness, nor was Lyme Disease mentioned either.
Jones is the mother of a five-year-old son and writes her own cooking blog. She laments she could not have a career. “I couldn’t go out to work full time,” she says. “Even if my son is in school next year, I’m not well enough to do any of that. I need something that I can take an afternoon off, or I can do something in pyjamas. And being around people is immensely tiring too. For me, being ill all my life, the biggest thing is not being able to work. I wanted a career. Career means different things, and it doesn’t necessarily mean you want to say I’m going to the city. But it’s really important for me to make something. To feel that I’m earning something.”
Having recently moved from Sydney to Adelaide, Jones recalls their Sydney house was “extremely mouldy”. She also remembers that the house she grew up in England was a “damp house, so occasionally in winter things would go mouldy quite easily. Every so often, things would smell damp, musty. The river flooded the house every so often. It didn’t go into the house, actually when I lived there. It came up to the doorstep. Basically, but it went under the house.”
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Thirty-six-year-old David Teshome has been unwell for the past four years, despite being healthy for most of his life. Teshome first became ill when he started working for Delta Airlines in Atlanta, Georgia. “I just started getting flu-like symptoms,” he says. “I was booking hotel rooms for pilots and flight attendants. It’s going to the busiest airports in the United states in Atlanta, Georgia. I lived near the airport too, so lots of chemicals from above coming in, a lot of frequency radiation.”
Teshome says he consulted numerous doctors who “would write it off as something being psychosomatic, anxiety, excessive worry”.
“I spent a lot of time in nature and started feeling better right away. But, slowly got worse, and I was bedridden for the entire winter and I started spending more time outside in nature and pacing myself. I’m not exactly sure how I got sick, but it just seems like being outdoors in good air seems to have a really positive effect”.
With the initial arrival of viral onset symptoms, and subsequent diagnosis of ME/CFS, moved to a new apartment in another state. Teshome felt worse. “I felt like I was essentially dying. My limbs were just very weak. And it felt like my body was being poisoned. I tested the place, and I found that there were high amounts of Stachybotrys mould there, and ever since then, I haven’t been able to tolerate going into one building.” Unable to live inside, Teshome has spent the past six months car camping. He is now pursuing extreme mould avoidance, as developed by Erik Johnson.
Teshome recently reached out to the Open Medicine Foundation on Facebook to “suggest that they start, perhaps, not write off the history of this. Because there’s a lot of individuals out there who are needlessly dying throughout the world. And there’s a lot of people who are in a comatose state. Individuals who even go into paralysis. And it’s just wrong when you go to an ME/ CFS clinic and they say, ‘no, we don’t deal with Lyme. We don’t deal with mould here. It’s completely wrong, because when you’re dealing with chronic complex conditions, you should look at everything that entails that.”
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WA based naturopath Natalie McGrath has treated chronic fatigue syndrome sufferers for the past twenty years. McGrath says Australia’s federal health agencies have placed chronic fatigue syndrome in the “Too hard basket.” In her opinion, the only treatment mainstream medicine can offer chronic fatigue sufferers is “a lot of antidepressants.”
In treating patients, McGrath’s focus is not on forming a diagnosis. “I’m looking at all the other pieces of the puzzle,” she says. “I suppose it can be helpful if they need some support or kind of disability payments, but as a general rule, if they’ve been diagnosed with ‘chronic fatigue’, it’s usually because they’ve gone through the whole western medicine route and it hasn’t been helpful.”
McGrath, who never learned about the history of chronic fatigue syndrome, thinks that the viral impact of illness depends on a host of factors. “If you look hard enough, you’re going to find infections with everyone of some sort. And I think it’s all these peripheral things that really make the difference. So does it matter if it’s a virus? I don’t think so, from my perspective. But I find it fascinating that in Lake Tahoe a whole bunch went down. I feel like there was a big component, something else going on there, like a poison or something that kind made everyone super susceptible.”
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Thirty-seven years after the original Tahoe outbreak, it appears history is repeating. Australian chronic fatigue patients are again casualties of omission.
The Federal Minister for Health, the Hon Mark Butler, recently announced an allocation of $31 million by the Albanese government for COVID studies. Emerge CEO Anne Wilson stated in an Emerge Australia September press release that “a focus on COVID and Long COVID research to the exclusion of ME/CFS appears to be a serious omission. Emerge Australia urges the Federal Government to act and invest in addressing this disease that so many women and men are impacted by. They have been left out for far too long.”
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