Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Hillary Johnson to be interviewed on radio on Friday, July 28. Can listen online.

Discussion in 'General ME/CFS News' started by Dolphin, Jul 27, 2017.

  1. Dolphin

    Dolphin Senior Member

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    Charles Ortleb just sent me this link:


    http://prn.fm/new-show-coming-progressive-radio-network-truth-power/

    Listen anywhere online https://beta.tunein.com/radio/Progressive-Radio-Network-s128061/

    One can see what time that would be in one's own time zone at https://www.timeanddate.com/worldclock/
     
  2. Sean

    Sean Senior Member

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    contagious epidemic

    We don't know if it is contagious/infectious.

    what is now referred to as “myalgic encephalomyelitis”

    Well, what was previously called myalgic encephalomyelitis, before the psycho-spin merchants rode into town.
     
  3. Kalliope

    Kalliope Senior Member

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  4. Forbin

    Forbin Senior Member

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    Haven't gotten to the interview part yet, but it's very eerie for me to hear about Ben Stein's syndicated column of 4/25/1986 in the Los Angeles Herald Examiner, in which he described a flu striking seemingly "everyone" in Los Angeles (which, for Stein, probably meant the entertainment community) which seemed to resolve in a couple of weeks and then, a few weeks later, would resurface as an "incurable flu" of feeling "spaced out," chronic fatigue and IBS symptoms.

    This is a very good description of what happened to me three years earlier... in Los Angeles.

    This same flu was described three months later in the September 1986 issue of New York Magazine as "The Hollywood Blahs," because it was hitting the film industry so hard. At that point it was being linked to the Epstein-Barr virus.
     
    Last edited: Jul 29, 2017
  5. slysaint

    slysaint Senior Member

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    Her book:
    OSLER'S WEB
    INSIDE THE LABYRINTH OF THE MYALGIC ENCEPHALOMYELITIS EPIDEMIC
    "A relentless, meticulous, and highly persuasive exposé by a journalist who spent nine years investigating the medical research establishment's failure to take seriously chronic fatigue syndrome… In a chronology that runs from 1984 to 1994, Hillary Johnson crams in fact after telling fact, building up a dismaying picture of a rigid and haughty biomedical research establishment unwilling or unable to respond to the challenge of a multifaceted disease for which a causative agent has yet to be found… A compelling, well-documented account…"

    https://www.oslersweb.com/about-the-book/

    eta: just listened to the interview. Very interesting.
     
    Last edited: Jul 29, 2017
  6. caledonia

    caledonia

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    Cincinnati, OH, USA
  7. shannah

    shannah Senior Member

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    @slysaint

    Anyone care to give a brief review for those who aren't able to listen?

    It would be appreciated by many I'm sure.

    TIA
     
  8. lnester7

    lnester7 Seven

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    Pls Give traffic !! this is so good.
     
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  9. Doogle

    Doogle Senior Member

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    This is the definitive history of why the disease is so misunderstood and not researched properly by the American government. The book chronicles all the major players heroes and villains, events, and names names in the cover up to keep the public from realizing that a disease was savaging a large population of people at the same time the AIDS epidemic was.

    Simply, the CDC did not want to deal with ME/CFS at the same time as AIDS, partly through fear and partly through incompetence. Once their position was stated, the bureaucracy could not admit their duplicity because they would be exposed as charlatans.

    Things have gotten better recently only because many of the original perpetrators have died, retired, or moved on. There are still a few of the original roadblocks around that would not like to see the illness researched properly as it could show how they minimized the seriousness of the illness. Hillary's book is a must read for those wanting to understand the convoluted politics of the disease so as to try to avoid repeating history.
     
    Last edited: Jul 29, 2017
  10. Mindy Kitei

    Mindy Kitei

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    Fantastic, lively interview. Hillary Johnson and Chuck Ortleb are both on their game. For those too young to know the history, it’s a compelling education. For those who lived through it, it’s a searing reminder of how the government abandoned/marginalized/ridiculed/ignored/your verb here/ ME patients to further its own agenda.
     
  11. alex3619

    alex3619 Senior Member

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    Anywhere near the LA County Hospital? The first semi-credible claims of ME were from 1932, two cases were documented I think. Then in 1934 there was the huge outbreak centered around the LA County Hospital. It was associated with a polio outbreak, though some time later.

    There is at least one thread on this on this forum, many years ago. We are fortunate in that US health authorities did a very detailed report of that outbreak. If I recall correctly, thousands were affected, though only a few hundred were given in depth investigation using the technology of the time. This was also a hospital doing research on early vaccines and some kind of viral lethargica. There was a landmark compensation case which was paid out in about 1938 after a court battle, though I forget the details.

    That deep government report noted the two early cases I think.
     
  12. dannybex

    dannybex Senior Member

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    IMO it's very unlikely that it's contagious/infectious. 1.5-2 million in the US are estimated to have ME/CFS, out of a population of 320 million. If it were contagious, that number would be many times higher, and we'd have heard reports every year of it growing out of control, like HIV/AIDS before they found that antiretroviral cocktails helped suppress symptoms. We haven't.

    Also Johnson's claims that 'the biggest risk factor' was 'intimate contact that you had with someone who was sick' just doesn't hold water. Tell that to Janet Dafoe and Ron Davis, just as two, out of hundreds of thousands of examples.

    My guess is that in cases where multiple family members are sick may be due more to environmental factors/exposures (for example long-term hidden toxic mold or pesticides, herbicides, etc) than some sort of infection.
     
  13. Kalliope

    Kalliope Senior Member

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    The programme ends with a song about ME called The Lady Upstairs by Chris Davidson.
    Never heard it before. Very moving.

    Was not able to embed it from youtube, but here is the link.
     
  14. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    "
    Polio used to be very common in the United States and caused severe illness in thousands of people each year before polio vaccine was introduced in 1955. Most people infected with the polio virus have no symptoms; however, for the less than 1% who develop paralysis it may result in permanent disability and even death."

    So lots of people may have been exposed or infected to a contagion but never became chronically ill / ME, like polio.
     
  15. Doogle

    Doogle Senior Member

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    Chances are there are subsets of this illness that require co-infections or specific strains of pathogen. Contagion may be applicable to some subsets but not others. Read about all the teachers and students that became ill in a cluster at Truckee HS CA near Lake Tahoe in the 1980s. That had all the hallmarks of an epidemic.
     
    Last edited: Jul 29, 2017
  16. dannybex

    dannybex Senior Member

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    According to Erik Johnson, who was there at Incline, that outbreak was due to toxic mold in one part of the school where he worked. No doubt you've heard of him, if not, a google search will turn up an excess of information.
     
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  17. dannybex

    dannybex Senior Member

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    But she's talking about people who became or become ill. At least that's my understanding...
     
    Last edited: Jul 29, 2017
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  18. Forbin

    Forbin Senior Member

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    Actually, my sudden onset occurred almost exactly five miles from LA County Hospital (now known as Los Angeles County+USC Medical Center), but I think that that's just an eerie coincidence, as I was only in the area on a day trip.

    I'd caught a really bad flu several weeks earlier while working in and around Santa Monica, quite near the Veterans Hospital. There had recently been an outbreak of "flu" among patients there. It had killed one and then had jumped to the staff. The infection at the VA was so virulent that they suspected Legionnaire's disease - and then there was no more news about it.
     
    Last edited: Jul 29, 2017
  19. lnester7

    lnester7 Seven

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    I have a question, why is always the default that CDC is stupid, and was negligence.
    I would like some investigative reporter to part from the theory that they knew what they were doing and ask the hard questions.
    Nobody goes through all that trouble (branding CFS and so on) if it was really negligence.
    I just don't buy it for a second, so the real research can happen, As of what really happened and maybe we can get an answer as what is wrong with us.
    Maybe we really need a class law suit action (just to ask for action and get money for research)
     
  20. slysaint

    slysaint Senior Member

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    Although its not caused by a virus, Tuberculosis also has a latent form:
    "Latent TB - the bacteria remain in the body in an inactive state. They cause no symptoms and are not contagious, but they can become active."

    I found this interesting:

    "However, in the mid-80s, TB cases began to rise worldwide, so much so, that in 1993, the World Health Organization (WHO) declared that TB was a global emergency; the first time that a disease had been labeled as such."

    Full article here: http://www.medicalnewstoday.com/articles/8856.php
     
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