My podcast: Medical Error Interviews

Probably!

 

This question is far too cryptic for me.

 

This members only thread will probably solve it for you

 

Okay, I'll jump to the obvious conclusion, based on what has been said so far.

 

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

 

Medically gaslighted.

My interview with Lily, who has ME, and her experiences with health care and a psychiatrist who insisted her physical symptoms were merely due to psychological factors and that Lily must accept her psychosomatic diagnosis.

But Lily is no shrinking violet and sets about researching her symptoms...

https://medicalerrorinterviews.podbean.com/mf/play/rtkntm/Lily_Kaiser_interview_audio_.mp3

 

Hey folks,


I interviewed mystery author Jayne Barnard about her experiences with permanent damage from medical error and living with ME.


Jayne was severely ill for many years - bed bound, could not finish a sentence - but has orchestrated enough of a recovery to become an award winning author of the "Falls" trilogy. All from living a mostly horizontal life.


https://medicalerrorinterviews.podbean.com/mf/play/j5z8rg/Jayne_Barnard_interview_audio_.mp3

 

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

 

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:

https://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf
p21

 

@ScottTriGuy Excellent, and important, interview Scott. Thanks to both you and Hillary.

Looking forward to Part 2.

 

Thanks Chris - we're lucky to have had Hillary do all that reporting and writing. It is important to ME history.

 

Hey folks - here is part 2 of my interview with Hillary Johnson, author of Osler's Web and other writing about ME.

Here is the video trailer:

https://www.youtube.com/watch?v=t2Jbj0LtLBw

And the podcast link:

https://medicalerrorinterviews.podb...9/Hillary_Johnson_interview_part_2_audio_.mp3

 

Listening to it now.

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

eta2:

did you find a link to the letter?

 

Hillary did send me the attached copy - the typing is too small to be included in my show notes - the contempt for sick and disabled people (ie ME patients) is probably astounding to those without ME or its ilk...

 

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.

 

I just emailed Hillary to see if she has a copy.

 

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.

 

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"