My podcast: Medical Error Interviews

If you have ME, you've probably heard of Erik Johnson - he holds a unique position in the history of 'chronic fatigue syndrome'.

From his front row seat, Erik tells how egos, fear and profit-over-people has created the "greatest medical error in their history".

Here is part 1 of my interview with Erik Johnson, Mold Warrior...

https://medicalerrorinterviews.podbean.com/mf/play/975kk7/Erik_Johnson_interview_part_1_audio_.mp3

 

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.

 

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.

 

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!

 

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.

 

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

 

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.

 

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

 

Part 2 of my interview with Erik Johnson, survivor of the infamous Incline Village outbreak from which 'chronic fatigue syndrome' emerged...

https://medicalerrorinterviews.podbean.com

 

Two banner decades for biowarfare. Wonder what "considered" constitutes.

 

Joan McParland interview: “I have been conned” - When sick patients are sold psychological snake oil

 

People of a certain age will remember Howard Bloom from his influence on rock music.

Howard also spent 15 years mostly bed bound with ME --- 5 of those years he couldn't speak --- but now he takes a bunch of drugs and he's symptom free....

https://medicalerrorinterviews.podbean.com/mf/play/8yd62d/Howard_Bloom_interview_part_1_audio_.mp3

ETA: Thanks to @Jaybee00 for hooking me up with Howard.

 

@ScottTriGuy

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

 

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.)

 

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.

 

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.