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Is ME Infectious?

Discussion in 'General ME/CFS Discussion' started by Erik Johnson, Sep 8, 2013.

  1. Erik Johnson

    Erik Johnson Senior Member


    Re: Is ME infectious?
    Post by Erik Johnson on Fri Aug 16, 2013 3:14 pm

    I'm a survivor of the 1985 Lake Tahoe epidemic, a graduate of Truckee High School, and a Holmes et al "CFS definition patient-study group" participant as a prototype for the new syndrome of "CFS"

    We have had a few more minor outbreaks since then, but nothing like the huge "Mystery Illness" incident that sickened thousands of people.

    This strange illness is full of bizarre contradictions.
    At times spreading like wildfire through groups of closely associated people, yet with people from these very groups seemingly unable to transmit it to anyone else.

    I saw a pattern immediately. A strange "exception to the rules" in which the flu-like illness turned from noninfectious to wildly contagious.

    The contagion occurred when people in the early "shedding phase" of viral illness were all in the presence of moldy buildings, particularly ones with Stachybotrys Chartarum.
    Only then, was the disease easily passed from one to another.

    The Truckee "teachers lounge" incident that caused Dr Peterson to call the CDC, starting the path to the new syndrome, is a very well described example of this process.

    I contacted the teachers at Elk Grove, and they found the very same "toxic mold" that we in Truckee did.

    The clues are right there. Simply ask yourself, "If this were a purely viral illness, then why did the one teacher who made the effort to get out of that lounge manage to avoid becoming ill?"

    -Erik Johnson
    Clin Infect Dis. 1994 Jan;18 Suppl 1:S43-8.
    Concurrent sick building syndrome and chronic fatigue syndrome: epidemic neuromyasthenia revisited.
    Chester AC, Levine PH.
    Georgetown University Medical Center, Washington, D.C.
    Sick building syndrome (SBS) is usually characterized by upper respiratory complaints, headache, and mild fatigue. Chronic fatigue syndrome (CFS) is an illness with defined criteria including extreme fatigue, sore throat, headache, and neurological symptoms. We investigated three apparent outbreaks of SBS and observed another more serious illness (or illnesses), characterized predominantly by severe fatigue, that was noted by 9 (90%) of the 10 teachers who frequently used a single conference room at a high school in Truckee, California; 5 (23%) of the 22 responding teachers in the J wing of a high school in Elk Grove, California; and 9 (10%) of the 93 responding workers from an office building in Washington, D.C. In those individuals with severe fatigue, symptoms of mucous membrane irritation that are characteristic of SBS were noted but also noted were neurological complaints not typical of SBS but quite characteristic of CFS. We conclude that CFS is often associated with SBS.
    PMID: 8148452 [PubMed - indexed for MEDLINE]
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  2. Erik Johnson

    Erik Johnson Senior Member

    We've spent nearly thirty years looking at viruses.
    What would be the problem in examining the rest of the evidence?
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  3. jimells

    jimells Senior Member

    northern Maine
    Are there any germ warfare labs near Lake Tahoe? I keep hearing rumors that Lyme Disease may be bacteria that escaped from a nearby lab. Given the very long history of U.S. government experiments on civilian populations, I keep wondering if we are 'collateral damage'. If so, that would certainly explain thirty years of being ignored and abused by that same government...
  4. Erik Johnson

    Erik Johnson Senior Member

    Message #67605 of 133562
    Wed Apr 14, 2004 7:09 am

    Don Scott lost a bit of credibility with me after his distorted
    description of the "suspicious modifications to the HVAC at Truckee
    High School" as a possible means of dispersing some biological agent
    through the school.
    The modifications were done because the south side of the school was
    unbearably hot during the summer months and the cooling system had to
    be modified to treat those rooms separately. The reason the windows
    were bolted shut is because some fool would always try to open them
    even though it was blazing hot outside. First tried metal louvers
    were tried to shield the windows before they resorted to customizing
    the air conditioning system.
    The biology classroom was on the south side in the "hot zone" and I
    don't think my old biology teacher, Mr SantaMaria, would have taken
    kindly to being a test subject for any experiments.

    Donald W. Scott
    Myalgic Encephalomyelitis As New Variant Brucellosis
    Journal Of Degenerative Diseases Vol: 2 No: 3, 3
    February 2001, p13-19.

    In the
    summer of 1984 the Tahoe-Truckee High School in northeast
    California was visited by a group of workmen who removed the
    heating/ air-conditioning system and replaced it with a
    unique new system. The new system had ducts to and from each
    room to the heater/ air conditioner which were designed in
    such a way that the air from each room was individually
    removed, heated or cooled, and then returned to the room it
    had come from. Except for incidental air exchange in the
    hallways, there was no effective mixture of air between the
    other rooms of the school. Thus, occupants of one room
    re-breathed the same air all day long. In addition, the
    windows, which previously could be opened, were shut and
    bolted and sealed. Teachers were strongly directed not to
    open the windows. One of the rooms was a teacher work room to
    which eight teachers were assigned. Within days of their
    return to school, these teachers were discussing the poor
    quality of the air in their work room. One of the eight
    refused to use the room and parked a camper trailer near the
    school to use as his work room. Within the next few months
    seven of the teachers in that room had become ill with one of
    the major epidemics of myalgic encephalomyelitis. The only
    teacher not taken ill was the one who had refused to use the
    room. However, there were other teachers and some students in
    the school who became ill with the new 'mystery' disease
    which had so many features in common with chronic
    brucellosis. There were also student family members and
    baby-sitters who became ill. Two local doctors soon became
    the medical professionals of choice for the person's ill with
    the new disease: Drs. Paul Cheney and Dan Peterson who had
    located in the outlying community just months before the High
    School heating system had been replaced. Also, both doctors
    had been to medical school at the expense of the U.S.
    Government and were obliged by their contracts to serve a
    period of time at a place designated by the Department of
    Defense. The circumstantial evidence is very compelling that
    the Department of Defense had remodelled the school heating
    system so that eight teachers would be exposed to primary
    aerosol, while the remainder of teachers and the students
    would be exposed only to secondary aerosol. According to Dr.
    MacAthur's theory, which had been challenged by Congressman
    Rood, those exposed to the primary aerosol would be disabled,
    while those exposed to secondary aerosol would be spared.
    Congressman Flood was apparently proven to be right. The new
    disease agent, quite likely based upon the brucella bacterial
    exotoxin, was contagious by secondary aerosol. The disease
    spread to the community and then to travellers. It was a
    'mystery' to those who encountered it, since no. bacteria
    could be recovered from victims. They were ill with a
    bacterial disease, but without any bacteria detectable. This
    new disease drew the interest of Dr. Holmes of the CDC and of
    Dr. Straus of the NIH and it was they who came up with the
    suggestion that it was a variant of chronic mononucleosis. Step
    Eight: By 1987 there had been several outbreaks of the
    'mystery' disease.
    Send an Email for free membership
    >>>> Help ME Circle <<<<
    16 April 2002
    Editorship : j.van.roijen@...
    Outgoing mail scanned by Norton AV

    [JvR: brucellosis -A rare infection (less than 200 cases per
    year in the U.S.) caused by bacteria of the genus Brucella.
    Human infection results from occupational exposure to
    infected animals or by ingestion of infected milk, milk
    products or animal tissue. -- Symptoms are
    nonspecific and include fever, malaise and weight loss.]
  5. Erik Johnson

    Erik Johnson Senior Member

    There was a strange heating contraption, but Dr Peterson and Dr Paul Levine don't seem to think it was the cause of the problem in that room. And we know the people who installed it.

    Truckee, California. Coincident with, and reported as
    part of an outbreak of CFS in northern Nevada and California
    [13, 17, 24], nine of 10 high school teachers who used a
    single, small, poorly ventilated conference room became ill
    sequentially. All nine teachers required a leave of absence,
    and two retired. Eight teachers remain ill 5 years after the
    onset of the outbreak. The one unaffected teacher spent less
    time than the others in the conference room, often doing his
    work outdoors.
    The conference room was one of four rooms serviced by
    an all-water heating system installed in 1985. It functioned
    by using variable air flow over a coil filled with hot water.
    The fresh-airv ents were sealed with no other sourceo f fresh
    air available. There were no functioning windows or air conditioning.
    A spirit duplicator and two coffee machines were
    in the room.
    The onset of illness was generally sudden, evolving over
    1 month, and fatigue was the predominant symptom.
    Headaches, myalgias, and dyspnea were other common complaints.
    Photophobia was often noted, with difficulty keeping
    the eyes open even in darkness. Many individuals experienced
    recurrent sinusitis. The prevalence of severe fatigue is
    noted in figure 1.


    (Thanks to Lisa Petrison for taking an interest in this incident and helping me research it.
  6. Erik Johnson

    Erik Johnson Senior Member

    The secret bioweapon conspiracy theory is a terrific example of how researchers and many people used our incident to promote their highly imaginative conjecture and wild speculations.

    They all want to talk about this famous event.
    But.... Not a one of them actually asks a survivor of that incident.
    In fact, when told things they don't want to hear, they pretend that they never heard a thing, so they can go right
    on spreading whatever rumor they dreamed up.

    It WAS unusual, but so far as I know, it wasn't a secret conspiracy to murder us all.


    "This seemed to be evolving, before our eyes, from a flu-like illness into something else"
    -Dr Paul Cheney

    "... and it seemed to be spreading. Through the local hotel and casino, two area high schools, members of a girls basketball team."
    -Dr Nancy Snyderman

    "That's when we wondered, Hey, maybe we ought to call somebody. This is really unusual."
    -Dr Paul Cheney
  7. Erik Johnson

    Erik Johnson Senior Member

    As I stated in the TalkHealth forum, it appeared that the flu-like illness that went through town exerted its greatest impact on people who were already being influenced by certain strains of toxic mold.
    The sum total being a "Mystery illness" that caught the attention of the CDC.

    I know the conspiracy theories are much more entertaining.... but this was still exciting enough.

    And it DID lead to the creation of a syndrome with decades of stimulating debates.


    St Mary's Regional Health Center

    235 West Sixth st.

    Reno NV

    Thursday, Jul 3 1997 I presented to the St. Marys Emergency Medical
    Center with chest pain, difficulty breathing and intense heart
    palpitations resulting from a known and deliberately controlled
    exposure to a fungal species later identified as Stachybotrys.

    My intent was to determine if these manifestations of mold exposure
    could be measured and assessed by the diagnostic tools of your

    I had timed similar episodes of mold reactivity and informed the
    staff of my intentions to correlate cardiological symptoms with the
    decreased effects which usually occured around four hours after the

    The palpitations were clearly audible to the technician installing
    the instruments and I predicted that these would abate at some point
    within four hours and asked that any change be noted when the
    audible nature of the palpitations ceased.

    When the palpitations finally stopped, I asked if there had been any
    change and the technician replied that there had indeed been a
    measurable increase in blood pressure but that it was
    not "clinically significant."

    Despite the ambivalent nature of this fluctuation, I stated that it
    was of extreme importance to me because it signalled the end of a
    discomfitting reaction to mold.

    The blank stare and unresponsiveness of the technician suggested
    that my words held little import.

    The cardiologist on call, Dr Cole, brought my discharge papers and
    stated that there was nothing wrong with my heart.

    Despite my assertions of mold reactivity, a diagnosis was made of:

    This is usually due to premature beats of the heart, that are called
    extrasystoles. The sensation of your heart skipping a beat is often
    a very frightening symptom. Most people (with normal beats) have
    these at times, and they are often not felt at all. In the absence
    of heart disease, palpitations are not a dangerous problem, but
    rather an annoyance.

    Extrasystoles are often brought on by heart stimulants. These
    include caffeine, nicotine, OTC diet pills, decongestants, and
    illegal "uppers".

    Stress and fatigue are prominent factors also."
    I informed Dr Cole that I was under the influence of none of these
    factors and that my palpitations were induced by a reactivity to
    mold which I had specifically correlated and timed.

    Dr Cole was doubtful of this explanation and explained that if I had
    ruled out the other factors on this list, that hyperventilation due
    to stress was most likely the cause of my palpitations. I used the
    evidence of my experimental exposure to mold to dissuade him of this
    notion but his refined concept was that I had developed an unfounded
    fear of mold that increased my stress level up to the point of
    palpitations and that even the timing I had measured was a projected
    mental construct that restored normal function after my invented
    time period had passed.

    Dr Cole's final diagnosis was that my mental state concerning mold
    was responsible for my symptoms and informed me that he "knew some
    very talented counselors". I proposed that mental health counseling
    was unlikely to make a significant difference in my physiological
    response but Dr Cole remained convinced that soliciting the services
    of a mental health professional was the best course of action dictated by the circumstances.

    The growing public awareness of the neurotoxic effects of
    Stachybortrys Chartarum casts this incident in a new light and
    raises concerns about the intransigence of Dr Cole to accept an
    explanation that could be easily tested and verified.

    In this case, I agree with Dr Cole that the services of a mental
    health professional are required and I sincerely hope that Dr Cole
    receives appropriate therapy before his mental predisposition to
    dismiss unfamiliar symptoms as psychological illness results in
    misdiagnosis and mistreatment of other patients suffering from
    biotoxin associated illnesses.

    -Erik Johnson

    Mechanism of Action

    Some strains of Stachybotrys chartarum can produce mycotoxins of the trichothecene and spirolactone families. The trichothecene mycotoxins satratoxins G and H are potent protein synthesis inhibitors and cause immunosuppression in laboratory animals. In experimental animal studies, the trichothecenes affect rapidly proliferating tissues such as skin and mucosa, as well as lymphatic and hematopoietic tissues (Ueno, 1983). In laboratory animals, acute exposure to large amounts of trichothecene toxins results in a rapid release of sequestered white blood cells into circulation, while repeated or chronic exposure destroys granulocytic precursor cells in bone marrow leading to white cell depletion. Among the reported cellular effects are: mitogen B/T lymphocyte blastogenesis suppression; decrease of IgM, IgG, IgA; impaired macrophage activity and migration-chemotaxis; broad immunosuppressive effects on the cellular and humoral-mediated immune response leading to secondary infections; and, paradoxically, increased spontaneous antibody producing cells in the spleen (Corrier, 1991).
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  8. Erik Johnson

    Erik Johnson Senior Member


    PowerPoint presentation to medical students; educating them about the history of CFS.

    Truckee High School in Nevada had an outbreak. Teachers that used a make-shift teacher
    lounge got it. This is what made people investigate.
    We don’t have any indication of what caused the outbreaks. We do know that known
    infections are not the cause of these outbreaks.
    Is there a severe infection not yet identified? Are some agents more likely to
    cause the illness? Is it something more toxic?
    In a similar situation, recently, students in LeRoy New York started
    having neurological problems, seizures, and Tourette's-like symptoms. Some say it’s in their
    head and caused by hysteria. Gloria Aldrich was called in to look investigate. They don’t know
    the cause. Toxic spill years ago that seeped into the ground. Could be environmental toxin?
    We don’t know.


    Actually, we do.

    We always did.

  9. Erik Johnson

    Erik Johnson Senior Member

  10. Ian

    Ian Senior Member

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  11. chronix



    How to explain the outbreaks then? We don't know if CFS and ME are the same diseases, we don't even know if the outbreak form of ME is the same as current day ME. For all we know it could've been a hit-and-run virus causing an illness simulating ME/CFS, just like syphilis was the great imitator in the old days.
    Anyone know when was the last recorded ME outbreak?
  12. lnester7

    lnester7 Seven

    I was told to protect my family. Not to share utensils, not as much as CFS but because we get viral reactivation which we can transmit, also we are sensitive to receive stuff. They do not know if ME is contagious but proceed as if it is.

    Now, there is a subgroup that swears by saliva and sexual transmission (how they contracted it) so it might be that a subgroup is. Like we have so many people in the Pot and we don't have tests until you know what you really have be protective or yourself and others.
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  13. Antares in NYC

    Antares in NYC Senior Member

    I strongly believe ME/CFS has an infectious component, based on my own experience. To my horror, my girlfriend became very ill earlier this year. She described the very same symptoms I experienced on my very first "flu-like" onset, over a decade ago. What scared me was that her descriptions of her vanishing memory, her unrefreshing sleep, the strange headaches, the crushing fatigue, and even the intense cervical pain were identical to mine. She has been tested for tons of potential causes, all negative until recently, when she was also diagnosed with ME/CFS. She is basically bedridden at this point.

    There is no question in my mind that ME/CFS has a contagious component, but one that doesn't affect all people equally. There has to be another component (genetic, immunological, etc) that predisposes some people to contract the disease, and some other people to never be affected.

    Since I was finally diagnosed this year (after 15 years suffering the disease), and after my current girlfriend fell ill, I have done a lot of personal searching, fighting against my malfunctioning memory, trying to find any answers from the past. I've even gone through the very painful process of reaching out to former girlfriends (at least the ones I'm in touch with) about this situation, to see if anyone else is being affected. It's certainly not a scientific sample, plus it doesn't cover people I'm no longer in touch with. Nevertheless, this is what I found out:
    • One year before I felt ill with my first onset of ME/CFS (1997), I dated a girl that seemed to struggle with similar medical issues for years. They never figured out all the causes of her fatigue and constant bouts of unexplained illness, but I know she had recurrent mono. Apparently she recovered, and she's now married and has a beautiful daughter. The more I look back in time, our conversations, her medical issues, etc, the more I believe that this may be how I got it (of course, if ME/CFS is indeed contagious).
    • Another person I dated 5 years ago (about 6 months together) told me she's been experiencing crushing fatigue, memory lapses, and recurrent bouts of unexplained flu-like symptoms that come and go randomly. While her issues may be of a different nature, I suggested a few ME/CFS doctors for her to visit, just to be on the safe side.
    • My current girlfriend fell ill with the exact symptoms of my original "CFS-flu", and has worsened considerably since.
    I know this may not mean anything. I know this is also a small sample of past relationships, but to me, there's something to it. The more I think about my personal ME/CFS experience, the more I'm convinced there's an infectious component to this nightmare. Nevertheless, there's a couple of things I don't understand:
    • Why some people get ME/CFS and others don't? For instance, I had a long term relationship with someone that had a very strong immune system. I would get cold sores every winter; she never did once. Every single year I would get every cold and strain of flu (not to mention pneumonia), but she barely ever got sick. We lived together for several years, shared everything, same environment. She's extremely healthy to this day.
    • Why did my current girlfriend get so sick now? I mean, why now after being together for 2.5 years? Why not earlier? What made the difference? This puzzles me to no end.
    I know that there are doctors and ME/CFS researchers that read these PR forums. I would be glad to share the details of my experience, in case any researchers are looking into the possible infectious trigger of the disease.
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  14. Erik Johnson

    Erik Johnson Senior Member

    To the best of my knowledge, Incline Village was the last recorded ME outbreak.
    Then the CDC's Holmes committee renamed it Chronic Fatigue Syndrome.
    Everything after this time was called CFS.

    Dr Peterson doesn't talk about it, but people in his own office became ill.
    At first glance, this would seem reasonable because sick people were coming in, and obviously brought their disease with them.

    But perhaps things are not so simple.
    As told in Osler's Web, all these sick patients had been to other local doctors first, about ten on average, before transferring their records to Cheney/Peterson's office.

    The curious thing is that these other doctors who saw the same patients first....did not become ill themselves.
    merylg likes this.
  15. Erik Johnson

    Erik Johnson Senior Member

    Clearly, something other than the "weird flu" was involved that resulted in a higher degree of contagion.

    It was enough to make the difference between recovery and chronicity.
    And it was also enough to dictate the level of post exertion malaise.

    Due to a conceptual process that "saw" only the weird flu, this other mechanism was ignored, although it was in plain sight.
    Antares in NYC likes this.
  16. Antares in NYC

    Antares in NYC Senior Member

    Very interesting indeed, but I can see how most doctors, upon meeting a new patient with unexplained and unusual symptoms of an infectious disease would take certain preventive measures (latex gloves, mask, etc). This could have minimized the risk of contagion.

    I'm not so sure about dr. Peterson's office personnel, but if they handled samples (or did not take certain measures at first) they could have been exposed to the disease. Also, they could have been exposed outside the office if they lived nearby the areas where the outbreak took place.

    I agree with you that there has to be another element that makes certain people more susceptible to get the disease than others, but I'm absolutely convinced there's an infectious trigger to it, whatever its nature (virus, herv, etc)
  17. Erik Johnson

    Erik Johnson Senior Member

    None of the other doctors took any precautions.

    It has been 29 years of absolute refusal to investigate any other clue but a virus.

    I deleted my posts because of the absolute sheer universal disinterest and antagonism to having this incident be investigated. People clearly want to never find out about it.

    I hear the CDC has finally started to take a serious interest in CFS
    Perhaps, in an ultimate ironic twist in the labyrinth of the Chronic Fatigue Syndrome Epidemic,
    it will be the CDC that finally looks at what happened here after all these years.

    "This seemed to be evolving, before our eyes, from a flu-like illness into something else"
    -Dr Paul Cheney

    "... and it seemed to be spreading. Through the local hotel and casino, two area high schools, members of a girls basketball team."
    -Dr Nancy Snyderman

    "That's when we wondered, Hey, maybe we ought to call somebody. This is really unusual."
    -Dr Paul Cheney
  18. Erik Johnson

    Erik Johnson Senior Member

    I just got word that Thomas Hennessy Jr. has taken life.
    Most people don't know this, but he was part of the Tahoe cohort.
    He became ill while skiing at Squaw Valley.
  19. Lou

    Lou Senior Member

    southeast US

    Very sorry to hear that. I wonder how many of the cohort have done same.

    Squaw Valley was my favorite place to ski. Many happy times, glad I didn't know then what I feel now.
  20. Mesurfer


    Very sad. From what I understand a large percentage from this cohort have resulted in similar outcomes. I beleive Rich Carson or someone at prohealth was going to release these numbers but it might be they were never released due to the sensitive nature of the subject.

    It's a sad day.
    taniaaust1 likes this.

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