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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Is ME Infectious?

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

  1. Erik Johnson

    Erik Johnson Senior Member

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    I was very sick, and couldn't afford to be so picky as to ignore obvious clues.

    Now that Dr Lipkin has run up against the same roadblock as the rest of the CFS researchers of having no easily identifiable culprits spring out of his testing, perhaps he will open his mind to the uninvestigated evidence that was present at the inception of this syndrome.
    To find out WHY it "paid to get out of that room"
    --------------------------------------------------------------
    Osler's Web; Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic
    by Hillary Johnson

    Page 49
    "Foot Soldiers From Atlanta"

    Truckee High teachers Gerald and Janice Kennedy met Holmes, but Gerald Kennedy confirmed, "It wasn't by his request --- it was by ours."
    Upon arriving for an appointment with Peterson, they learned from the doctors staff that a federal investigator was on the premises. Gerald Kennedy,
    by now convinced that he, Janice, and their Truckee High colleagues had been victims of an environmentally transmitted disease, sought a meeting
    with him.
    Apparently Holmes was agreeable. "We went into the examining room and asked him some questions," Kennedy said. High among the teachers concerns was the possibility that fumes from the ditto machine toner --- which, after all, was packaged in a can decorated with skull and crossbones --- had made the teachers ill.
    Another culprit proposed by Kennedy was the encrusted, infrequently changed air filters in the room's heating system.
    Could they have allowed a viral agent to infect the teachers?
    "I remember telling him about the filters," Kennedy said. "You could tell he thought we were a bunch of loonies, That was early into it, and we were still thinking, Well, maybe we ARE crazy. But you would think that we would be questioned, at least, and there weren't a lot of questions. He just nodded his head and said, "Uh-huh, uh-huh.'' Very little information was exchanged." By his countenance of indifference, Holmes communicated his bias to the Kennedys: "He seemed to have already made up his mind about us."
  2. Erik Johnson

    Erik Johnson Senior Member

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    Since the very beginning, it is as if trying to tell researchers about this throws a switch in their minds to the "off" position.

    Scientific curiosity is instantly swept completely out of their minds forever.

    It is almost as if the mere suggestion of a clue causes "researchers" to recoil in horror.

    Rather than inducing interest, the mere possibility that one might exist calls up the full measure of
    every bit of skepticism they possess.

    My experience has been that, just as was seen in CDC epidemiologist Dr Gary Holmes, within thirty seconds a decision is made that this must never be investigated.
    That choice is unalterable and irrevocable.
  3. Erik Johnson

    Erik Johnson Senior Member

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    http://phoenixrising.me/archives/19083?cpage=1#comment-386427

    Lipkin and colleagues also found upregulation in Leptin, a hormone that plays a key role in regulating energy uptake and use, and Serpin, a protein family with multiple roles. More obscure cytokines, and and their cousins chemokines, were also affected but Lipkin didn’t give any further detail.

    ---------------------------------------------------

    http://www.scilogs.com/in_scientio_veritas/cfs-leptin/

    Glimpse of an elusive diagnostic biomarker for Chronic Fatigue Syndrome
    23 April 2013 by Kausik Datta, posted in Inflammation, Research Blogging, Science, Science Communication, Science Education, Scientific Research




    http://www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf
    1989
    "The crucial differentiation between ME and other forms of postiviral fatigue syndrome lies in the striking variability of the symptoms not only in the couirse of a day but often within the hour. This variability of the intensity of the symptoms is not found in post viral fatigue states"
    (Dr Melvin Ramsay, President UK ME Association. ME Association Newsletter, Winter 1989 20-21)
    ----------------------------------------------------------------


    Mold Warriors
    by Dr Ritchie Shoemaker


    Chapt. 10
    Saratoga Springs. NY, Birthplace of the American Mold Revolution
    page 201

    How quickly does leptin, MMP9 and VCS change with -re-exposure and re-aquisition of illness?
    It was one thing to be able to show what the mold illness had as markers, but truly understanding
    the physiology of the illness meant seeing changes in both hyperacute and chronic illness, as well
    as hyperacute changes with "new" illness. The changes from normal suggested by the Biotoxin
    pathway were present in spades in mold illness.



    During the Incline epidemic, I noted my own condition was seriously exacerbated by
    "cold and damp weather".

    I knew that neither cold or damp, per se had any effect on me,
    so I asked myself what was it that cold and damp might


    increase during those winter months?
    What would "release" when the weather changes?

    The answer seemed obvious. It could only be mould.

    I told Dr Cheney and Dr Peterson that until they find out what the "Weird flu" was, that I am just going to work
    on staying away from the mould. (although we spell it differently in the U.S of A.)
    -Erik Johnson


    http://www.meresearch.org.uk/information/keypubs/Acheson_AmJMed.pdf

    The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis,
    Iceland Disease and Epidemic Neuromyasthenia
    E.D. Acheson, D.M., M.R.C.P.
    Department of Medicine, State University of New York, College of Medicine of New York, and
    Department of Medical Services, Maimonides Hospital, Brooklyn, New York

    >
    Cold damp weather
    frequently increased pain and a sense of
    illbeing in patients in whom a definite
    recrudescence was not precipitated.
    ---------------------------------------------------

    “Disease is very old and nothing about it has changed. It is we who change as we learn to recognise what was formerly imperceptible.” J.M. Charcot
  4. Erik Johnson

    Erik Johnson Senior Member

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    I wondered if Dr Lipkin would find Type A influenza.
    For this is what was going around during the Tahoe Mystery Illness.
    -------------------------------------------------------------------------
    http://phoenixrising.me/archives/19083?cpage=1#comment-386427

    The big pathogen hunt draws a blank thus far

    This study is looking exhaustively for any pathogen: viral, bacterial, fungal or parasitic, to see if a chronic infection could explain ME/CFS. Many of the results are in, but so far there is no clear sign of viruses at least. It is every bit a collaborative effort, with patients provided by long-established physicians including Dr Dan Peterson and Professor Jose Montoya.
    First the researchers looked at blood plasma for 285 CFS patients and 201 controls from Jose Montoya at Stanford (these are serious numbers). They searched for genetic evidence of infection using a panel that was able to detect 20 specific bacteria, viruses or parasites; including Epstein-Barr virus, Human Herpes Virus 6, enteroviruses, Influenza A and Borrelia bacteria.

    --------------------------------------------------------------------------------------------------------------
    Sierra Sun
    Jan 31 1985

    Philippine flu virus widespread in Truckee

    By Barbara Barte

    One of several respiratory viruses going around locally is the Type A Philippine Influenza, according to Dr Michael MacQuarrie, director of emergency services at Tahoe Forest Hospital.
    "It seems to be striking all age groups" says MacQuarrie. "One of the reasons is that is that it's been around four years since this particular virus has been around, so a lot of people are without immunity to it."
    The first reported cases in the state were in a Sacramento kindergarten class in mid-December, he says, and Truckee-Tahoe residents started getting it around the Christmas holiday. By mid-January, the virus was causing a 14-to-22 percent absenteeism in local schools.
    "It's not an epidemic, but it spreads so quickly, it could become one," says MacQuarrie. "Most viruses have a 10-day to 3-week incubation period between exposure and coming down with it, but the incubation period for this one is only one to four days, so it moves very quickly through a community."
    The illness lasts from a few days to three weeks, with most cases falling in the 7-to-10 day range, he says. Symptoms are a high fever, cough, headache, muscle aches and a general feeling of exhaustion, requiring a lot of sleep.
    The fevers have been very high, 104 degrees or highter," says MacQuarrie, "and the muscle pain is much worse than we usually see."
    The best treatements are fever control, lots of fluids and bed rest, says the doctor. Tylenol is best for keeping fever down in children. Tylenol or aspirin may be used for adults. Humidified air may help.
    "These home remedies will usually take care of it," says MacQuarrie. "However, if the fever is uncontrollable or the patient is coughing up colored phlegm, they may have gotten a secondary bacterial infection and should see a physician for more specific therapy.
  5. Erik Johnson

    Erik Johnson Senior Member

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    Dr Hyde picked up right away that the incubation period for the Tahoe illness made HHV6 impossible. But it was JUST RIGHT for Type A influenza.

    http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
    A Brief History of Myalgic Encephalomyelitis and an Irreverent
    History of Chronic Fatigue Syndrome
    As presented at the London Conference of May 12, 2006 by Byron Hyde
    MD:
    (snip)
    Many of the M.E. epidemics started out among children or students.
    This occurred in the 1936 Fond du Lac epidemic, the 1946 to 1949
    Akureyri epidemics, the 1950 St Joseph Infirmary epidemic, the 1952
    Middlesex epidemic, the 1955 Cumbria Street Children’s Hospital. It
    was not then surprising, that the Incline Village epidemic should also
    start among students.
    The Lake Tahoe Epidemic
    The Lake Tahoe epidemic that started in August 1984 also started
    among students. In this case the epidemic began in a high school
    girls basketball team that was travelling in a bus to play various
    other teams. The epidemic spread rapidly with an incubation period
    of approximately a week. As in many of the other epidemics, it then
    spread to the general community. After the epidemic started it then
    involved three high schools, both students and teachers and
    ultimately spread to the community. For some reason it was
    considered to be an epidemic of infectious mononucleosis. This is an
    illness caused by a virus Epstein Barr Syndrome. Associating the
    Lake Tahoe epidemic with Epstein Barr Syndrome was frankly ridiculous
    and you will see why almost immediately.
    Dr Paul Cheney and Dr Daniel Peterson were inundated by the number of
    rapidly developing cases of seriously ill patients and called for the
    Centre for Disease Control (CDC) in Atlanta for back up. Initially
    CDC did not appear to (be) very interested. Members of Congress were
    then called and CDC jumped to investigate. According to one of the
    principals who related the story to me, a crew headed by Dr Gary
    Holmes from CDC came out ot Incline Village from Atlanta, drew blood
    samples from the ill patients and spent much of the short remaining
    time in Lake Tahoe playing golf. It is possible that the CDC crew
    would have done a much more thorough investigation but they did not
    and this may have been due to the political forces that gathered
    steam.
    Business Comes First
    Reputedly, members of the business community whose commercial
    interests depended upon tourist trade and the seasonal ski business
    did not want news hitting television and other media that there was a
    devastating infectious disease running around Lake Tahoe. It would
    have cost the business community millions of dollars. Accordingly, I
    was told that pressure was then placed upon the congressmen to stop
    CDC from investigating this epidemic further or they would lose their
    jobs. And apparently, so it came to pass. There was little further
    investigation except for the sustained efforts of Dr Paul Cheney and
    Dr Daniel Peterson. Reputedly, increasing negative pressure and
    threats were placed upon both of these physicians, sufficiently so
    that Dr Cheney eventually moved his family to South Carolina.
    First International Symposium on Immunology and Pathogenesis of
    Persistent Virus Infections.
    Fast-forward to April 1987 and the First International Symposium on
    Immunology of Persistent Virus Infections held in Atlanta Georgia.
    This was a symposium hosted by the CDC and Dr Carlos Lopez. At this
    meeting Dr Gary Holms gave out his new paper, “A cluster of patients
    with a chronic mononucleosis like syndrome,” that had just been
    published in JAMA. (See Holmes, Kaplan, Stewart et al: JAMA 1987:
    287:2297-2302)
    The publication essentially stated that Epstein Barr Virus was not
    the apparent cause of this illness in the 130 patients from which
    they took blood samples. But they weren’t sure and suggested that
    further study be done. Stephen Straus who was apparently the NIH
    chief behind the Lake Tahoe investigation was sitting beside me at
    this symposium. When Dr Holmes gave both Dr Straus and myself the
    paper, Dr Straus in a monolog to him reacted very negatively, stating
    that the patients had tricked him. I was amazed.
    Epstein Barr Virus (EBV)
    Now, anyone who realizes that infectious mononucleosis is caused by
    the herpes family virus, Epstein Barr Virus (EBV), and that the
    incubation period of this illness is approximately 40 days, should
    have realized that you simply cannot have a rapidly spreading viral
    epidemic with a virus with a latent period of 40 days.
    Neither Dr Straus nor Dr Holmes, senior government physicians, should
    have fallen into such a trap. They only had to go to the excellent
    CDC library to realize that rather than spending half a million
    dollars or so on a publication that they should have known would not
    have incriminated EBV.
    Yet this epidemic and this Holmes paper somehow spread the myth that
    this illness was caused by EBV. today, as I write this short history
    of M.E. and CFS the vast majority of physicians and the public, at
    least those physicians and public who don’t associate these
    illnesses with McEvedy’s hysteria, still associate Epstein Barr Virus
    with CFS.
    Such is the perseverence of error.
    Human Herpes Virus (HHV6)
    This virus was not associated with CFS until after the 1990 period.
    HHV6 is the virus that causes the benign childhood illness, Roseola.
    By 1986 HHV6 was already known to have an incubation period of 9 days
    due to human experimentation when the actual virus was injected into
    several children. See (Gorbac, Second Edition, Infectious Diseases,
    page 1335).
    When acquired by random infection, the incubation period of HHV6
    Roseola was more like 12 days. So once again anyone with access to a
    library or a computer would have soon dispelled any view that HHV6
    was a cause of M.E./ CFS epidemics where the incubation was
    approximately seven days or less.
    Is it possible that Steven Straus and the other intelligentsia of the
    National Institute of Health (NIH) in Bethesda and CDC in Atlanta and
    elsewhere didn’t have access to libraries and the Internet? Maybe we
    should start a public request to ask for donations for them.
  6. Erik Johnson

    Erik Johnson Senior Member

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    The first thing CDC epidemiologist Dr Gary Holmes and head of the CDC's herpesvirus division Dr Carlos Lopez did during the 1985 investigation into the Tahoe outbreak was to write up a proposal that roughly 20 patients should be selected for long term study.

    What an incredibly sensible plan.

    This would have a way of nailing down whatever it was that was under investigation, regardless of how confusing or inexplicable this illness appeared to be..
    Whatever those people have is the primary illness entity to be solved

    But this was not done.

    By creating a loose definition instead, this opened up the chance for everyone in the world who had an opinion or any crazy theory to say and promote any theory they wanted... without fear of having it checked, and therefore, disproven.

    The most prestigious member of the Holmes committee, Dr Elliot Kieff, refused to sign the Holmes definition for this very reason. He predicted that without a solid basis, the syndrome would degenerate into chaos.

    The fact that no one ever came back to find out the most basic things about our outbreak, such as the "weird flu" having been identified as Philippine influenza at the time ... or about the biotoxins.... is an excellent demonstration that the major goal of all researchers is hijack the paradigm to support their own agenda, and never to investigate the actual outbreak the CDC responded to..

    I thoroughly tested the entire research and medical professions to see if they would remember the original purpose of the syndrome was to solve the Tahoe outbreak.

    "I am in Incline Village survivor and prototype for CFS. I have information. Would you care to hear it?"

    It is notable that with only one exception, they declined, universally rejecting the opportunity, and the information. Whether for good or ill, diverting the object of inquiry to their own theories and goals while displacing the original.

    It appears that to do things right, investigators would either have to adopt Gary Holmes original proposal to have specific exemplers of the entity serve as a basic standard, or adopt Elliot Kieff's requirement for a specific marker before proceeding.

    Without some objective standard to hold researchers to their purpose, there appears to be nothing that would prevent them from substituting whatever they want all over again.

    "Target validation" is the minimum requirement made necessary by the medical professions refusal to adhere to meaningful standards.
  7. dannybex

    dannybex Senior Member

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    I agree Erik, that investigators should definitely be looking at enviromental issues, including and perhaps especially mold. They're focusing way too much on bacterial and viral infections that are extremely common in the general population.

    However, from what I've read from Thomas' own posts and interviews, he attributed his illness to an entire plethora of other potential toxins as well -- many things over the years that finally contributed to his crashing and becoming bedridden:

    http://phoenixrising.me/interviews-3/10317-2

    http://phoenixrising.me/archives/6895
    Dmitri likes this.
  8. Omar88

    Omar88 Senior Member

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    In my case yes its infectious !! I got it from a sexual contact and i tried to believe my doctor when he said its mostly EBV or CMV and every one around got it until my brother opened wound touched my blood and in less than a week he got my all symptoms exactly i had when this night mare started two years ago but his symptoms were faster and less aggressive thanks god and after 4 weeks he started to get better until 6 weeks he was ok :))

    Now he always get sore throat and he always joke with me saying you infected me </3 and something is lowering my immune system i think because i got tonsils monthly not like before and he laugh !! i know he means it but he doesnt want to say it directly as he is seeing me getting multi vitamins and herbs for him when i buy my monthly supplements and he knows how i care about his situation.

    I gave him something and he is not over it 100% yet even after 5 months of this i can see that every time he gets his sore throat some rashes like mine appears on his chest and he get tired when those days comes before,, so what i can do is to keep praying for him to get over it totally.
  9. Erik Johnson

    Erik Johnson Senior Member

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    http://phoenixrising.me/archives/6895
    I studied medical HISTORY, because i was a neophyte in medicine, but a pretty damn good salesman. I was making about $20 grand a month in 1987, though i often felt REALLY sick! Sadly and Stupidly, i did NOT read the Bible, which says that even God rested on the 7th day. I had made a BAD mistake and put some of my small inheritcance ($3500) and $7,000 of my PARENTS’s money into a “SURE THING” land deal in Austin, Texas in 1984, and it went WAY south in 1985, when the Texas water commission declared that the water table could NOT produce enough water for the planned residential community, where we owned our land!….NOT good! they canceled the project and the highway that was supposed to go RIGHT past our hand picked exit property…and our surefire deal went south BIG time! and my poor parents had to pay $2500 a year in Interest payments for the past 24 years while i worked myself almost to death….

    after a ski trip to Lake Tahoe in the winter of 1986, where i contracted some type of flu,

    but i could NEVER take a day off, because i was paying for college tuition for younger brothers and sisters, and expensive rent in SF, Ca. and trying to pay back my parents…and this nasty flu got worse and worse, until i collapsed on October 23, 1987, after drinking too many margaritas and raw oysters on a fellow car salesman’s new credit card. (He owed me about $1,00o…to make a short story longer, i have NEVER worked a full day ever again!

    -------------------------------------

    I know exactly where Tom was when he got that flu.
    He described his onset to me.
    It was just like the rest of us.
    He had just passed through a building that was later remediated for toxic mold.

    That four to six week interval was the threshold for recovery.
    If it went on any longer, it "evolved" into something else, as Dr Cheney said.

    I began looking for patterns, any "difference" that existed between those who recovered, and those who did not.
    I found one. It seemed worth looking into.

    -Erik
  10. Erik Johnson

    Erik Johnson Senior Member

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    http://www.moldreporter.org/blog/ch...otoxicosis-may-be-indistinguishable-from-cfs/


    Chronic Trichothecene Mycotoxicosis May Be Indistinguishable From CFS

    Objective: Chronic exposure to trichothecene mycotoxins (mold-produced toxins) is known to be both immunotoxic and neurotoxic in animal studies. Accidental exposure to these toxins can occur when toxigenic molds grow in buildings and release spores into the air. The objective of this research was to review the available evidence which suggests that chronic inhalation of certain mycotoxins produces a constellation of symptoms and laboratory abnormalities consistent with the Chronic Fatigue Syndrome (CFS).
    Method: Both a hand-search and a MedLine-based search of the literature were conducted. Personal communications with key researchers in the field and presumed victims of chronic mycotoxicosis were included.
    Results: In 1982, concerned that trichothecene mycotoxins might be used as a chemical warfare agent, the Department of the Army commissioned the National Research Council to review the available literature on the potential health effects of exposure to trichothecene mycotoxins. They concluded that there was no well-defined cohort of people that had been exposed via inhalation, the presumed route of interest on the battlefield. Thus the potential health effects of inhalation exposure were not known.
    In 1986 Croft et al., with funding from the Army, reported chronic inhalation mycotoxicosis in a household in Chicago. (See “Airborne Outbreak of Trichothecene Toxicosis” in Atmospheric Environment 20: 549-552.) Subsequently, reports or presentations of chronic mycotoxicosis in several homes, office buildings and a hospital have been published. For every published report, experts in the field relate several unpublished cases.
    In California, two episodes involving groups of residences have been reported in the lay press since 1994. Most, but not all cases have involved molds which produce trichothecene-class mycotoxins. Sev-eral of the published reports explicitly state that the symptom constellation experienced by mycotoxin vic-tims is similar or identical to CFS. Almost all of the published reports are consistent with a diagnosis of CFS.
    At a 1994 conference dedicated primarily to mycotoxigenic fungi, Pierre L. Auger reported that most of his patients met the 1988 CDC criteria for CFS. Cognitive impairment was significant. He referred several of these victims to an occupational neurologist, who diagnosed them with “toxic encephalopathy.” Auger reported evidence of immune system impairment in many of his patients. Eckardt Johanning reported evidence for immune dysfunction in a cohort from an office building in New York. In addition to laboratory findings such as reduced natural killer cell number, clinical findings included recurrent vaginal candidiasis and bacterial infections. Several of his cases were severely disabled.
    Although longitudinal data on patients is very limited, at least one cohort has been followed for ten years. Fewer than 20% of the victims reported complete recovery. Most reported some recovery. About 10% either did not recover or became worse.
    Most aspects of chronic trichothecene mycotoxicosis are consistent with CFS, including the symptoms, laboratory findings and recovery profile. It is suggested that further research is warranted to determine if a subgroup of patients diagnosed with CFS are actually suffering from mycotoxicosis.
    References
    Johanning E, Morey PR, Jarvis B (1993): Clinical-Epidemiological Investigation of Health Effects Caused by Stachybotrys atra Contamination. In Seppanen O, Steri J, Kainlauri E (eds): “Indoor Air 93″ Helsinki: FiSIAQ, 1:225.
    Printed with permission from RJ Kelly, Lawrence Livermore National Laboratory, University of California at Livermore
    Antares in NYC likes this.
  11. dannybex

    dannybex Senior Member

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    I understand that Erik. I was just trying to point out that there were many other incidents of exposures to environmental toxins in Thomas' case, (along with exposures to ticks) prior to to his mold exposure that may have also played a role in his final 'crash', which may help to explain why some can be exposed and not get severely ill, and/or why some can recover gradually without requiring to do the extreme mold avoidance that you and some others have done.

    http://phoenixrising.me/interviews-3/10317-2

    "It’s been a brutal 30 years. I started getting double vision back in senior year in college. I was a work hard, party hard kind of guy. I had been bitten by close to 80 fleas in the very first week of senior year – our band had a beach house right on the New England waterfront. It turns out that I contracted what is now called Lyme disease right back then...

    ...It turns out that I am positive for babesia, bartonella, lyme burgdorferi, cat scratch fever, as well as heavy metal poisoning, chronic mercury poisoning. severe obstructive sleep apnea, severe neurally mediated hypotension, severe fibromyalgia syndrome and a few other medical conditions.

    I worked my ass off, 7 days a week, 14 hours a day for the next 15 years! I worked TOO hard. and then I partied too hard and with the tiny bits of black metal in my body from the nasty jobs on the oil tankers, and too many bad fillings in my teeth, and four separate types of bacterial infections from my encounter with fleas I was a sitting duck for some other type of insult. and for me, it was the neurotoxins in the raw oysters on the night of October 23, 1987.As I described to you in my train track analogy, the toxic raw oysters, were probably the last straw that broke the camel’s back.

    As I told you, my dad was the chief lobbyist for Getty Oil companies worldwide, for the last 10 years of his Getty career. Anywho being the oldest son of this workaholic, I wanted to earn my college tuition. If I worked on a competitors ship I was “allowed” to work the dirtiest job on the ship…since I was one of the “bosses” kids, I got the worst jobs, one of which wascleaning out the bilges an boilers of supertankers…WHILE they were underway.

    This got minute specks of black and grey heavy soot and metals into my lungs and then I would take a shower after my shift and I would have black film coming out of my nose, and out of my armpits. (much like a coal miner).

    Seven years ago, I found Dr. Alan R. Vinitsky. He has worked slowly and meticulously, month by month to strip away my old mercury fillings, he has gotten me to take clay baths for two years, once a week to leech out old bits of heavy metals in my tissues from my days cleaning oil tankers in the Merchant Marines.

    But, once a week, magnetic clay baths, in pretty warm water, left a black film around the tub, that looked a LOT like the black film that was on my armpits and nose back in my oil tanker days.

    I also am taking Chinese herbs, and low dose antibiotics and anti malarial drugs. About 8 months ago, I was able to start walking a mile a day. I got up to one mile in the am and one in the pm…..I began to do light stretching and my doctor gave me an Rx for Ambien for occasional use for re-regulating my sleep. This time, the Ambien worked and I began to get restorative sleep for the first time in 30 years! I wear a chin strap made of neoprene at night…..and I sleep MUCH better now. I go to sleep around 10 pm and I wake up at 6 pm. for 20 years I could only wake up at 6pm and go to bed at 6 am.

    About 8 months ago, I was able to start walking a mile a day. …I began to do light stretching … This time, the Ambien worked and I began to get restorative sleep for the first time in 30 years!"


    He was indeed doing 'better' -- walking a mile a day, but then was involved in a terrible car wreck that broke his back (and neck?), and forced him into a nursing home. So very tragic...
    anne_likes_red likes this.
  12. Erik Johnson

    Erik Johnson Senior Member

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    There are a million other things to look into, so this is important, but no more important than anything else.
    No reason to elevate it in importance.


    Except for a few trivial details.
    It was at ground zero for the syndrome, it has shown up over and over, and some of us who concentrated on it went from ampligen patients who were nearly bedridden, to hiking vigorously and climbing mountains.
    We thought that made it worthy of consideration.

    ----------------------------------------------------------------
    http://blog.healclick.com/exercise-mecfs/

    Considering how fundamental exercise intolerance is for ME/CFS patients, it seems important to consider the situations in which clearly defined ME/CFS patients who have exercise intolerance in some circumstances are able to get rid of it and exercise without negative consequence by systematically attending to certain variables.

    That is at the crux of Erik Johnson's story, for instance.

    http://www.amazon.com/dp/B00ED...

    The following blog is from another patient who used the same strategy as Erik to be able to exercise vigorously without PEM. (He started out thinking that he would try Ampligen, but after extreme avoidance found that it wasn't necessary for him after all and never even tried it.)

    http://ampligen4me.wordpress.c...

    It would be interesting if the authors of this study were to compare one of these patients when totally clear vs. the same person in a bad environment, since one would think that the physiological differences would be easily detectable through their tests.

    Cordially,

    Lisa Petrison, Ph.D.
    Executive Director
    Paradigm Change
    www.paradigmchange.me
  13. Erik Johnson

    Erik Johnson Senior Member

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    CFS may have been the warning for nanoparticles that nobody heeded
    September 13, 2013 at 2:21pm

    During the 1985 Incline Village “mystery illness” it seemed that common household molds were suddenly having a devastating effect on all of us.

    Everyone knew it, everyone noticed this, but it was ENTIRELY attributed to changes in the immune function of patients due to infection, and NEVER on the possibility that something in the ambient atmosphere might have potentiated the toxicity of fungal-products from common molds.

    I have been telling everyone for 25 years that I have had BETTER results by treating mold “as if it were Plutonium” than anything I have seen from the most aggressive chemotherapy aimed at viral or bacterial infections.

    This is how I came to be known as “The Mold Warrior”.
    ”Mold Warriors” by Dr Ritchie Shoemaker. Chapt. 23 “Mold at Ground Zero for CFS”.
    http://www.moldwarriors.com/

    In my military career as a launcher specialist for “The Neutron Bomb”, I was trained to look for what DOESN’T happen after a neutron strike: A LOSS of immune function which leaves one susceptible to nearly anything, as opposed to consequences arising as a normal consequence from normal infection.

    That is exactly the type of effect that I witnessed during the 1985 Tahoe Mystery Malady: An inexplicable loss of immune function that appeared to correlate to environmental locations.

    I have read that fungi serve as “bionanofactory” for biosynthesis of nanoparticles.

    It seems to me that mold does not normally have access to fine metallic particulate matter which can be processed into “ultrafine” nanoparticles, as “modern pollution” did not exist.

    These metallic nanoparticles are known to affect the microglial cells and induce CP450-decoupling” with the subsequent production of Reactive Oxygen Species, which is entirely consistent with CFS.

    The activities of humans have dramatically changed the potential for contact between fungi and ubiquitous airborne metallo-particulates.

    If mold is capable of what the article below [refers to this article .http://www.nanowerk.com/spotlight/spotid=465.php] says mold is doing… and is converting ambient atmospheric fine metal particles into even smaller nanoparticles… the global environment is in deeper trouble than anyone suspects.

    The inception of Chronic Fatigue Syndrome just might have been the cautionary warning for nanoparticulates that nobody heeded.

    In the Saratoga Springs manual, the hints of a sudden surge in fungal pathogenesis is mentioned in several places where the effects matched nothing in THEIR mycotoxin literature. Dr William Croft, who published the first peer reviewed abstracts on trichothecene toxicity in the United States, said the effects were “radiomimetic”.

    IAQ experts Pierre Auger and Harriet Burge agree that T2 (trichothecene) mycotoxins fall short of achieving this level of illness.

    My own experiments with mold samples suggests that there are special times when this effect blazes forth with an intensity and magnitude that causes a “hit and run” effect upon the neuro-immune system which baffles physicians trying to identify a toxic substance.

    Several years ago, I saw an abstract which described the capability of certain molds and bacteria to act as biosynthesizers of nanoparticles.

    My speculation is that the mutation discovered by Dr Shoemaker has resulted in the conjugation of this resistance-property by various powerful “toxin forming” molds, which are now capable of withstanding the antimicrobial effects of human-introduced ubiquitous metal particulates, and processing them into extremely hazardous “nano-plumes”.

    This resistance trait emerged in the late 1970′s, just prior to the incredible surge in unexplained-illness such as Gulf War, Fibromyalgia, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, as well as massive increases in autism, Parkinsons, MS, and ALS.

    The CFS epidemic strangely centered upon north Lake Tahoe, and oddly spared an almost identical demographic at south Lake Tahoe, only twenty miles away.

    I believe that the emergence of “CFS” in such an otherwise pristine area represents the “canary” of a much larger ambient environmental alteration.

    The reasons for which might be a special condition of application of ultrafine silver particles to this specific region.

    During the 1980′s, the local ski resorts embarked upon an illegal and untested campaign of intense cloud seeding with silver iodide. Many environmentalists were concerned that in addition to the approved mountaintop dispersers that were strategically placed upwind, that private aircraft were covertly targeting every storm from and potential precipitation heading toward the resorts.

    My speculation is that this intense seeding was responsible for gradually increased resistance in the microbial terrain of north Lake Tahoe, which combined with the newly potentiated indoor toxic molds, resulted in “spot colonies” of extremely hazardous molds which emitted nano-plumes and manifested in unprecedented immune suppression that ALLOWED people in these environments to acquire the opportunistic infections which might otherwise have been warded off, resulting in “clusters” of unexplained illness and the inception of the Chronic Fatigue Syndrome.

    Does anyone remember the printers in the Truckee teachers lounge, as described in Osler's Web?
    Perhaps Gerald Kennedy went right to the point in asking Dr Gary Holmes to look at the printer ink and the air filters.
    -Erik Johnson


    NanoclastSemiconductorsNanotechnology
    Nanoparticles Emitted from 3D Printers Could Pose a Risk

    By Dexter Johnson
    Posted 29 Jul 2013 | 4:38 GMT


    The migration of 3D printer technology from factory settings to people’s homes has triggered mainstream excitement about the technology's potential. In fact, it has even turned gun control laws on their ear after it was demonstrated that you could build a fully functional firearm with one of these 3-D printers.

    What buyers of these systems may not have considered is that operating them could expose them to toxic nanoparticles. The hobbyist may now have to think about this potential risk when operating a 3-D printer in a garage or other indoor environment because of research out of the Illinois Institute of Technology showing that commercially available desktop 3-D printers emitted potentially harmful nanoparticles that could accumulate in indoor environments.

    The research, which was published in the journal Atmospheric Environment (“Ultrafine particle emissions from desktop 3D printers”), demonstrated that common, commercially available 3-D printers available for home use emitted between 20 and 200 billion ultrafine particles (UFPs) per minute. The UFPs are, by definition, nanoparticles because their diameters are no larger than 10 nanometers.

    The wide size range for the UFPs is due to the different kinds of printing technology used. A 3-D printer that uses a lower temperature polylactic acid (PLA) feedstock emits about 20 billion UFPs per minute whereas a higher temperature acrylonitrile butadiene styrene (ABS) feedstock printer produces about 200 billion UFPs per minute.

    Alarming as these figures may sound, these emission rates are about on par with what is generated from “cooking on a gas or electric stove, burning scented candles, operating laser printers, or even burning a cigarette,” according to the Phys.org story covering the research. It’s hard to imagine that candles and gas stoves need to be eliminated from people’s homes. So, what gives?

    The real measurement of risk involves not only the level of exposure we have to a given material but the hazard associated with that material because of its unique properties. UFPs generated by the 3-D printers the researchers studied had varying degrees of toxicity, depending on the feedstock they used. While PLA-generated UFPs have actually been shown to be biocompatible with mammals, previous studies have demonstrated that thermal decomposition byproducts from ABS processing have toxic effects in mice and rats.

    The researchers remain somewhat circumspect about how this risk should be addressed. Their main advice: the operator of a home 3-D printer should ensure that the place where the machine is stationed is adequately ventilated, thereby reducing the exposure to the UFPs. Nonetheless, they note that more research needs to be performed to evaluate the risk from these 3-D printers.
    merylg likes this.
  14. Erik Johnson

    Erik Johnson Senior Member

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    Desperation Medicine

    by Dr Ritchie Shoemaker

    Chapt. 23. Surviving Chronic Fatigue Syndrome
    ...
    page 345

    It began in Nevada, in a tiny community on Lake Tahoe known as "Incline Village". It was here, starting back in 1985, that two observant physicians began to notice a strange pattern in patients who complained of blurred vision, faltering short-term memory and debilitating exhaustion.
    During the months and years that followed, this mysterious ailment (Was it caused by a virus?) would evolve through a series of ever-changing names: Lake Tahoe Disease, Chronic Epstein Barr Virus Syndrome, Yuppie Flu.
    And finally Chronic Fatigue Syndrome, or CFS.

    During this same period, the two physicians who had made the initial diagnosis -- internists Dan Peterson and Paul Cheney -- would be thorougly discussed, chewed up, and then completely ignored by the influential scientists who run both the National Institutes of Health (NIH) and the U.S. Centers for Disease Control (CDC).

    The story of what happened to Drs Peterson and Cheney deserves a book in itself. Although their basic theory that Chronic Fatigue Syndrome is caused by a "mono"-like virus perhaps related to herpes simplex would never be dis-proven, the powerful administrators at the great medical think-tanks continually insisted otherwise. For more than a decade, the scientific intellectuals in Atlanta and Bethesda issued a never-ending series of contradictory - and often just plain wrong - advisories that ascribed the disorder to hald a dozen different factors, none of which turned out to be involved in the pathogenesis of this disease.


    -----------------------------------------------------------------------------------


    CFS Research Group
    Tue Oct 21, 2003 12:42 pm

    SUBJECT. Re: "Shoemaker Lacks Science"

    I'm a survivor of the 1985 Incline Village CFS epidemic and one of the
    people Dr Cheney and Dr Peterson used to demonstrate that CFS was not
    chronic EBV.
    I was back in Dr Petersons ampligen screening program in 1998 when I
    was at my absolute lowest point and was once again diagnosed as "The
    Perfect Case of CFS" but I couldn't afford the ampligen.
    I had been complaining about an extraordinary reactivity to specific
    mycotoxins from the first time I walked into Dr Cheney and Dr
    Petersons office during the Incline Village epidemic. With no access
    to ampligen and no other options that seemed likely to help, I decided
    to try to exploit the knowledge that high levels of mycotoxins were
    devastating to me and see if I could avoid low levels as well to
    minimize the deleterious effect.
    Within six months of following a strategy of extreme mycotoxin
    avoidance, I returned to Dr Petersons office with pictures of myself
    after climbing Mt. Whitney, the highest mountain within the contiguous
    48 states in the USA.
    I have spent the years since then controlling my symptoms through
    extreme mycotoxin avoidance and being discounted by every researcher,
    doctor and PWC I tell my story to.
    There are dozens of people on this list that I have backchanneled
    about my experience. They find nothing of significance in my story.
    Dr Shoemaker describes my situation perfectly in his book "Desperation
    Medicine" and an approach to my illness as being "neurotoxin mediated"
    has restored my ability to go mountain climbing, lead an active
    lifestyle and avoid an incomprehensible level of misery. I learned to
    take advantage of an effect I observed over years of suffering.
    My experience doesn't conflict with HHV6 concepts but rather adds to
    it since my "sudden onset" was identified by Dr Peterson as HHV6a and
    as I said in message 13684, "I have no reason to doubt it".
    If the researchers believe that no one clinically diagnosed with CFS,
    especially a person who was used to define the parameters of the
    syndrome has improved significantly by taking advantage of concepts
    that are in accordance with Dr Shoemakers ideas, it is because they
    refused to listen when I told them about it.
    -Erik
  15. Erik Johnson

    Erik Johnson Senior Member

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    I told Dr Bryon Hyde how the clusters of illness at Tahoe happened in moldy places and proposed that it was a bunch of people all together with mold AND a weird flu which combined to give the "flu" an extra bit of oomph.

    It sounded just like the Montreal party that Dr Hyde almost attended.
    (Talk about dodging the bullet!)
    What if they were simultaneously exposed to mold plus the virus?

    Dr Hyde just said "It's all anecdotal. You can't prove it"

    Still, you'd think someone would want to look into it someday.

    http://www.grubstreet.ca/...

    BH In 1984, I was busy, as always. A young Irish physician, Sean, and his wife, a senior hospital intake worker, were white water kayaking on the upper Ottawa River. They stayed overnight at my house, in Ottawa. When they were leaving, the husband said, "Stop working for a couple days, Byron, and come join us at a party, in Montreal. It'll be fun and interesting."

    I'd interned in Montreal, and love the city. The idea was tempting, but I was too busy. I didn't go.

    About a week later, I get a call from Sean, my Irish physician friend. He and his wife, and about half the people at the party, had fallen ill with a strange disease. They suffered with pain, had severe headaches and didn't have the energy to get out of bed. Worse, they did not get better over the next several months and they started to notice serious cognitive problems. The same was true for the rest of their friends who attended that party.

    I thought, "My God! What in the world is going on?" I kept in contact with Sean and his wife. She was running, I believe, an outpatient department at McMaster University medical school hospital, at the time.

    They didn't get better. In fact, the wife has never got better. That's 1984 to now. We are looking at 24 years. Sean did slowly improve significantly but never returned to full health. His wife did not do as well.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Albuquerque
    Erik Johnson

    Would you mind raising the font size on the above post? Too small for many to read with ease.

    Sushi
  17. Kina

    Kina Moderation Team Lead

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    Ontario, Canada

    Sushi and Erik Johnson -- I have enlarged the font by removing the formatting.

    Kina :)
    Valentijn and Clodomir like this.
  18. Erik Johnson

    Erik Johnson Senior Member

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    Don't give up hope.

  19. Erik Johnson

    Erik Johnson Senior Member

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    http://healthypets.mercola.com/site...013/09/16/cyanobacteria-blue-green-algae.aspx

    During the 1985 Tahoe Mystery Illness incident, I staggered down to the lake for some fresh air.
    A storm had rolled through the day before, throwing slimy silt and sediment up on the beach.
    As the waves receded, it left flat ledges about four feet wide, with a vertical ledge of perhaps an inch and a half separating the "steps".
    The flat ledges had a greenish tinge about the same color as in the pictures of cyanobacteria, but the vertical ledges were a stunning neon green color.
    So bright green that it almost had the appearance of being lighted.
    To see it, one had to walk through the sticky silt to the waters edge and look back, which few people were doing. From the beach side, all you could see was the tops of the ledges which were more like grass in color.
    I went back to the beach and talked to others about this. No one had seen anything like it before. "It must be grass"
    I repled "So green, and grows overnight?"
    "Well it can't be anything bad or they would warn us"

    I wondered who that might be, since we were the only ones on the beach.
    It seemed to me that since the wind blows from the southwest, this might be the reason why so many people were getting sick on the NORTH SHORE of Lake Tahoe, while Dr Hanning Mehrens, a doctor on the south shore who was sympathetic to the mystery illness, only had a handful of cases.

    When I allowed Dr Cheney to talk me into becoming a prototype for this new syndrome that he was involved in starting, I didn't want the CDC to find out about all the other things that were going on, or they would surely continue refusing to investigate the weird flu that went through town.

    But it seemed to me that as doctors and researchers heard about this new syndrome, surely they would want to find out how it started, and come back to look for clues.

    Then I would be able to tell them about this.

    I have ZERO reason to agree that nothing is known about CFS, or that I must "admit" that CFS is nothing more than ME.


    http://www.abc.net.au/news/2013-09-...ential-cause-of-motor-neurone-disease/4981598
  20. Shell

    Shell Senior Member

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    Thanks for all of this Eric. I am so sorry that your friend has died. I can't imagine coping for over 30 years with this- let alone doing all he did! What a remarkable man!

    One area of research that never happened (and I suspect never will) was the Ramsay theory that ME might be a form of polio. He said there were something like 72 polio viruses. It's admitted that the oral vaccine has caused other forms of polio outbreaks in Africa and elsewhere, but overall there's silence on what is happening.
    I wonder about polio because it too could happen in clusters - some people were mildly effected, some moderately and some (like those I helped out at a Cheshire Home) ended up in iron lungs.
    Many of us have partial paralysis.
    What are your thoughts?

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