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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Nielk

Nielk

Senior Member
Messages
6,970
Dolphin said:
He is an advocate of the mold hypothesis/mold avoidance approach
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He is a patient from the outbreak at Lake Tahoe in the 80's and understandably feels that the history and science from the outbreaks which started this disease are ignored by many clinicians, researchers and advocates in the community.
 
T

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Cheesus said:
What's up with this guy?

https://twitter.com/i/web/status/807557629258002433
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Erik Johnson is extremely well known, one of Dr Cheneys and Dr Petersons first Lake Tahoe ME patients. He wrote one of the most well known articles of the Lake Tahoe outbreak and events there (its an extremely interesting article, anyone know the link to put here?).

He feels like too many of our advocates are ignoring that this illness appears in outbreaks etc. and that this is being forgotten . He found that where each of the outbreaks were.. and where the teachers were affected in the school, the areas where the outbreaks occurred or the buildings, there was a toxic mold connection on testing. (He was the first person to link the common ME/CFS/mold connection)

there is some info on Erik Johnson here http://paradigmchange.me/erik/ (he's free of ME/CFS as long as he completely avoids mold)

this article explains it more https://cfsuntied.net/2015/09/08/cfs-the-invisibled-disease/

There could well be something Eriks mold theory with this illness... as though there seems to be something genetic in my family as far as ME goes, both me and my sister got ME/CFS while living in houses with severe mold issues. (while my other two sisters who have never lived in a house with mold issues remain free of this illness).
 
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Cheesus

Cheesus

Senior Member
Messages
1,292
Location
UK
@Nielk @taniaaust1

I have had a look into him now. He certainly seems determined, I will give him that. I find it peculiar, however, that he keeps saying they were the first patients, even though ME was defined by the WHO in 1969 and that outbreak occurred in the 80s.

Perhaps this thread isn't the place to discuss it.
 
Nielk

Nielk

Senior Member
Messages
6,970
Cheesus said:
@Nielk @taniaaust1

I have had a look into him now. He certainly seems determined, I will give him that. I find it peculiar, however, that he keeps saying they were the first patients, even though ME was defined by the WHO in 1969 and that outbreak occurred in the 80s.

Perhaps this thread isn't the place to discuss it.
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I think that he looks at it that in the US, this was the first time that CDC was called in to investigate an outbreak of the disease and it was based on this investigation that they coined and defined the disease.
 
halcyon

halcyon

Senior Member
Messages
2,482
Nielk said:
I think that he looks at it that in the US, this was the first time that CDC was called in to investigate an outbreak of the disease and it was based on this investigation that they coined and defined the disease.
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Except it was the second time...
 
halcyon

halcyon

Senior Member
Messages
2,482
Nielk said:
It was the first time that the CDC was called down to investigate this disease as far as I know.
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Donald Henderson, at the time an epidemiologist with the CDC, and Alexis Shelokov with NIH NIAID, investigated and published findings on the US epidemic neuromyasthenia (aka ME) outbreaks in the 1950s.
 
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