1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

My podcast: Medical Error Interviews

Discussion in 'General disability topics and advocacy' started by ScottTriGuy, Jun 17, 2019.

  1. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Messages:
    692

    Attached Files:

    brf, Guest 2176, chrisb and 4 others like this.
  2. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    It is interesting to compare and contrast the views of the two Johnsons. It makes one realise that the histories we have are merely snapshots and that there must be much more that will never be known.

    I was intrigued by the comment at about 26 when he says that toxic mould had not been discovered in the western medical literature. That probably needs to be the "publicly published" western literature. A few months ago, I remember not where, I saw a reference to a mould being investigated as part of the bio weapons program of the 1950/60s. I thought it particularly ironic that the agent in question was endemic in the south western states of the US. It did not progress to development. I think the reference would have been in a report of the Army Chemical Corp.
    As with most of the Fort Detrick research of the time it is almost certainly unavailable.

    I thought at the time that I should perhaps make a thread about it - but one can only push one's luck so far.
     
    ScottTriGuy and andypants like this.
  3. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    The claims from about 35 that there was merely a breakdown of communication and that Holmes was much maligned seems very strange. Do the CDC not have any means of news management? Why not set the record straight by telling the correct story? How could it be in their interest to let a false story go uncorrected for so long?

    Something does not add up.
     
    ScottTriGuy and andypants like this.
  4. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    4,393
    TBH, what I've seen from Johnson makes him seem like someone who is wrapped up in his own story and makes misleading claims that encourage people to be dismissive of patient concerns.

    That's one way of saying it!
     
    ScottTriGuy, chrisb and andypants like this.
  5. Guest 2176

    Guest 2176 Guest

    I vehemently disagree. Erik has made the argument that a large volume of anecdotal evidence ("clues") that were involved both in his outbreak and many endemic cases , merit further investigation. He has not made many or any outrageous scientific claims but rather thinks that a certain level of basic observation and epidemiology has been neglected, and that researchers as well as the CDC have been wholly unresponsive to this. There are serious consequences of the neglect of this evidence even by people nominally on our side. Many of the most severe patients that have died had enviromental intolerances as one of their symptoms (like anne ortegren). Many people end up homeless or sleeping in the cold, like i have been, because of it.

    Erik doesn't say the literature proves his theory! He says the literature isnt there (for the most part) because scientists ignored clues from the outbreak and endemic cases. There were other patients besides him that reported enviromental issues in the clusters, but they were simply lost to history and did not recover or become advocates. The Truckee teachers in that room all asked the CDC to look into what was in the air in their break room making them sick. It was ignored.
    .and as @Hip has pointed out with his iteration of a "dual factor" theory, an environmental agent combined with a virus could explain the unique pattern of outbreaks that only soread through certain areas and didn't travel outside of them. @ScottTriGuy im glad you have given all these people--Jeff, Hillary Johnson, and Erik Johnson, a platform as they all have information with relevance to my case (CCI caused by infection and mold toxicity I believe), and all fight to get those respective ideas investigated.
     
    Amw66, ProudActivist and ScottTriGuy like this.
  6. Guest 2176

    Guest 2176 Guest

    CFS patients were not a powerful lobby group ever. I imagine they simply didn't think it worth their time or effort to do anything related to making them Less upset or communicatinf effectively with them
     
    ProudActivist and ScottTriGuy like this.
  7. Guest 2176

    Guest 2176 Guest

    Are you talking about valley fever? It is endemic to the southwest but it was much less of a problem before soil was disturbed widely by construction and agriculture (which i think is one reason it's so bad in the San Joaquin valley. )

    Saddam had shells loaded with aflatoxin that I believe were never deployed.
     
    chrisb and ScottTriGuy like this.
  8. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    4,602
    Yep. That's the one. Coccidioides. I knew it began with "c" and ended "oides". Thanks for that.

    EDIT TO ADD Just to prove that I was not imaging it:

    Coccidioides immitis was considered by the United States during the 1950s and 1960s as a potential biological weapon.[58] The strain selected for investigation was designated with the military symbol OC, and initial expectations were for its deployment as a human incapacitant. Medical research suggested that OC might have had some lethal effects on the populace, and Coccidioides immitis started to be classified by the authorities as a threat to public health. However, Coccidioides immitis was never weaponized to the public's knowledge, and most of the military research in the mid-1960s was concentrated on developing a human vaccine
    https://en.wikipedia.org/wiki/Coccidioidomycosis
     
    Last edited: Dec 5, 2019
  9. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Messages:
    692
    oldtimer, rvallee and duncan like this.
  10. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    1,572
    Two banner decades for biowarfare. Wonder what "considered" constitutes.
     
    ScottTriGuy and chrisb like this.
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,573
    Location:
    UK
    Starlight, oldtimer, EzzieD and 10 others like this.
  12. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Messages:
    692
  13. Trish

    Trish Moderator Staff Member

    Messages:
    51,844
    Location:
    UK
  14. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

    Messages:
    1,857
    @ScottTriGuy

    Hey, when is part 2 coming out? Amazed that you were able to get about 7 words in...lol
     
  15. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Messages:
    692
    I know, right?

    Part 2 gets published next Monday, and I asked him your question right near the end - he still sleeps in 2 four shifts, and sets his alarm to wake him up (I was expecting him to say he'd just wake naturally, as his earlier big insight into healing, or not getting sicker, was to listen to his body.)
     
    Yessica and ukxmrv like this.
  16. oldtimer

    oldtimer Senior Member (Voting Rights)

    Messages:
    634
    Location:
    Melbourne Australia
    I just listened to another great interview by Scott Simpson with author Marcus Sedgwick about not being believed and being directly told your illness is all in your head. https://www.patreon.com/MedicalErrorInterviews - dated Mar 30, 2021

    https://marcussedgwick.com/all-in-your-head/
    " For the last three years, Marcus has been working on a book based on his own experience of falling ill, over seven years ago, with ME, also sometimes termed Chronic Fatigue Syndrome*. It explores what happens when your doctor tells you your illness is psychosomatic, despite all the evidence to the contrary, and what these four words – all in your head – do to you. An experience which will now occur to many more people, due to the C-19 virus."

    All in Your Head is due out in the near future.

    Thanks for another absorbing interview, Scott.
     
    Kirsten, Amw66, Snowdrop and 7 others like this.
  17. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Messages:
    692
    Thanks @oldtimer --- Marcus is a great interviewee, I'm really looking forward to his book and its impact...especially among young adults, his usual readership.
     
    Amw66, Yessica, Snowdrop and 3 others like this.

Share This Page