My podcast: Medical Error Interviews

The interview starts at 4:45 minutes from the start, and ends 2:30 minutes before the end. The rest is advertising you might prefer to skip.
 
Stacey has ME...

Double hit.

Journalist and mother of two Stacey Roy has been permanently injured by a medication that makes her disabling sensitive to smell, taste, light and sounds.

That makes being a Mom much harder.

Stacey also has a complex disease but even when she's in medical distress, she "refuses to go to the ER to be humiliated."

Stacey has been mocked and shamed - and traumatized - by emergency room staff who are ignorant about her illness.

Stacey tells it like it is in this episode of Medical Error Interviews...

https://medicalerrorinterviews.podbean.com/mf/play/ygk5nf/Stacey_Roy_interview_audio_.mp3
 

Attachments

  • Jayne Barnard headshot.jpg
    Jayne Barnard headshot.jpg
    422.2 KB · Views: 1
  • Podcast MEI logo.jpg
    Podcast MEI logo.jpg
    1.7 MB · Views: 0

Attachments

  • Hillary Johnson head shot - small.jpg
    Hillary Johnson head shot - small.jpg
    944.6 KB · Views: 3
ScottTriGuy said:
I had the honour to interview Osler's Web author Hillary Johnson - in part 1 she shares about the intersection of her career, her experiences with ME and medical errors, and uncovering the decade long crime of diverting ME research funding elsewhere...

https://medicalerrorinterviews.podb...k/Hillary_Johnson_interview_part_1_audio_.mp3
Click to expand...

transcript and details here
https: //medicalerrorinterviews.podbean.com/e/hillary-johnson-the-banality-of-medical-evil-part-1-investigative-journalist-pulls-no-punches-to-the-medical-industry/

eta: I put a couple of spaces in above after https:

eta2: been reading up on these events; for those interested

the Holmes Definition of Chronic fatigue

Gary P. Holmes, M.D.; Jonathan E. Kaplan, M.D.; Nelson M. Gantz, M.D.; Anthony L. Komaroff, M.D.; Lawrence B. Schonberger, M.D.; Stephen E. Straus, M.D.; James F. Jones, M.D.; Richard E. Dubois, M.D.; Charlotte Cunningham-Rundles, M.D.; Savita Pahwa, M.D.; Giovanna Tosato, M.D.; Leonard S. Zegans, M.D.; David T. Purtilo, Ivi.D.; Nathaniel Brown, M.D.; Robert T. Schooley, M.D.; And Irena Brus, M.D.;
http://www.cfids-me.org/holmes1988.html

see also:
Rapidly developing flaccid muscle weakness with minimal effort or activity,
(The Lake Tahoe epidemic was initially called Raggedy Anne Syndrome due to
this finding.)
Click to expand...
https://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
p21
 
Last edited:
Listening to it now.

0:16:00
Simon Wessely in the United Kingdom has done a lot of damage saying ME is psychosomatic - after the CDC published its report and rolled out the name CFS - Wessely sent Holmes a letter, and you could almost see Wessely rubbing his hands together in gleeful anticipation - he congratulated on a wise choice in name and he had always thought ME was psychosomatic not organic and eager to collaborate for a long future
Click to expand...

eta: re 'unknighting someone' yes it has been done...see Robert Mugabe

eta2:
Was CDC ignorant, incompetent, colluding, sociopathic? Hillary found a letter posted in CDC, the infamous "Dear Sirs" letter - devastating satire and making fun of people very ill and laughing at their pain - it had been posted for over a year - and a few years later it was still posted
0:35:00
Larry Schonberger was very resistant to removing the "Dear Sirs" letter from the bulletin board but finally relented - it has come back to haunt them as Hi
Click to expand...

did you find a link to the letter?
 
Last edited:
These interviews have done a very good job of "humanising" the experiences of the book, which always seemed rather overwhelming and difficult. One now sees why.

It just makes one curious as to what else she knows that didn't make it into print.... and whether it could answer some more of the questions.

Valuable work.
 
On reflection, does anyone know where to find that letter, mentioned in the interview, from Wessely to Strauss circa 1988? It seems like the sort of thing we need, and I had not heard of it before.
 
On relistening it seems that the letter from Simon Wessely O.B.N. was to Gary Holmes. Presumably it must have been sent in March or April 1988 as the Holmes et al paper was published in March.

This is all very strange when one looks closely at the dates. The Holmes paper was published in March. The Strauss paper which had been presented at a conference 5 or 6 months earlier was published in March. The Wessely, David, Pelosi paper was published in March. The Eisenberg paper presented in May the previous year was published around this time. The Holmes paper appears, on paper, reasonably objective, so long as it is not read in conjunction with all the others, which are the ones that give the game away. Was this really not coordinated?

Unfortunately Wessely does not get into the Index in Osler's Web. It is hard to say whether he would have been piqued or relieved. That letter would be a valuable addition.
 
ScottTriGuy said:
I had the honour to interview Osler's Web author Hillary Johnson - in part 1 she shares about the intersection of her career, her experiences with ME and medical errors, and uncovering the decade long crime of diverting ME research funding elsewhere...

https://medicalerrorinterviews.podb...k/Hillary_Johnson_interview_part_1_audio_.mp3
Click to expand...


Just listened to both part 1 and 2. I've read Osler's Web. Ms. Johnson has a wealth of information, perhaps some of it as yet untapped - it seems so. More can be said about the 1980s/90s phase of this medical scandal. She reported on biopolitical shenanigans at the very centre of this travesty. Personally, she has been there with the rest of us, as a pwME caught in the medical industry - what terrible treatment she suffered.

It would be wonderful if she could write another book about this, but I understand the health impediments to doing this. Her determination to write the first one is inspiring and amazing.

It would be very interesting to see letters she talks about in her interviews.

Thank you very much to both Hillary and @ScottTriGuy for this fascinating set of interviews.

ETA: added - "some of it as yet"
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom