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Podcast: Medical Error Interviews

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
(Moderators - I was unsure where to put this thread, please move it to more appropriate forum if needed - thanks.)

Hi all,

I've been working on this project for far longer then I thought it would take - turns out there is a lot more work involved then anticipated (while working and doing advocacy stuff and being sick) in creating a podcast.

Nevertheless, I'm happy to finally be slowly rolling out the launch - here's the logo I had created:

Podcast MEI logo.jpg

ME is an embedded medical error

I consider ME to be an embedded medical error in our medical systems: it begins with a category mistake (that ME is psych), and that error impacts (impedes) different institutions:

- Funding Institutions: research funding is a small fraction of what it should be
- Medical Institutions: medical testing and treatment is often denied (yet were pushed toward psych 'treatment') and we're often subjected to iatrogenic harm and trauma
- Political Institutions: are at best indifferent
- Insurance institutions: deny disease, deny benefits
etc...

But I thought a podcast only on ME would be mostly speaking to our bubble - but since medical error is the 3rd leading cause of death, that means many multiples of more people will have been affected by medical error.

I interview a wide variety of medical error incidents and diseases, but since ME is the most egregious and global medical error (imo), our stories will be a frequent topic.

But the podcast isn't just about the medical error, it is also about raising awareness and seeking solutions.

I interview 3 groups of people:

- survivors of medical error (or their surviving family)
- health care workers who have participated or witnessed medical error (I have software to disguise their voice)
- advocates and policy makers - the folks who are, or should be, making our systems safer.

I especially like interviewing people who fit 2 of those groups.

Podcast Secrets Stories.jpg

I already have about a dozen interviews recorded, but now comes the laborious task of creating show notes that are time stamped and editing the recording (it has been a steep learning curve with Final Cut Pro) and then publishing on various platforms.

Inaugural Episode of Medical Error Interviews - Jeff Wood

I am so very pleased to launch the podcast with an interview with our own @jeff_w

Many folks on PR will be familiar with Jeff's incredible story and his efforts to bring awareness of how CCI relates to ME.

Jeff's life story is littered with medical error, stretching back to when he was a small child. As Jeff's condition worsened, he became the repeated victim of medical abuse.

Fortunately, Jeff is both resilient and smart, and using his research skills from his death/sick bed in the hospital, and in spite of much push back from the medical establishment, he was able get a diagnosis and life changing treatment.

Finding Medical Error Interviews

I am listing the podcast on multiple platforms, but the biggie is iTunes, so please subscribe to the podcast there, and leave comments too (they help it get a higher rating = more awareness).

I have also listed it on my Patreon site, and you can hear Jeff and I chat there as well: https://www.patreon.com/MedicalErrorInterviews/posts

Please also share on social media so more people become aware of medical error and ME and we can make our access to health care safer...and eventually more equitable.

And if you have a compelling medical error story you would like to share - or know someone who does, PM me with a brief description and we'll take it from there.

Thanks,
Scott
 

Gingergrrl

Senior Member
Messages
16,171
@ScottTriGuy I just listened to your entire podcast with @jeff_w at Patreon and am in awe! It was so well done and am so proud to know both of you guys :star::star::star: I actually never listen to podcasts but just subscribed to the series at iTunes.

I hope this is okay to say, Jeff, but hearing you recount your story back to 2014 (but especially the 4 months that you were in the hospital in SoCal) was traumatic for me just to listen to as your friend, so I can only imagine how it must have felt to re-tell it?! :jaw-drop: But it was very brave of you and you are helping so many people by so openly sharing your story. And many thanks to you, Scott, for taking on this huge project to address medical errors, especially in the complex illness community.

I so related to losing years of my life with doctors who did not believe that I was ill and how traumatizing that was. When you shared in the podcast about your first visit with Dr. K, it was so eerily familiar and brought me back to 2014 (and I also was not using a wheelchair yet b/c I could not admit that I needed one). But four months later, I had to start using one and then used it for almost four years until my illness went into this "remission" -- although different underlying causes, different treatments, and not a complete remission like yours.

I really related to so much of what you shared and thank you both again for taking the time and effort to do the interview and podcast :trophy:
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
Thanks @Gingergrrl and @Inara

I dare say that Jeff's experience with very severe ME and CCI is unto itself traumatic, but what he experienced from the medical system - repeatedly - is potentially even more traumatic.

I hope the more people who hear our stories and health care experiences, the more understanding and empathy and support and funding and so on....we'll receive.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
Hi all,

I have published 3 more medical error interviews at iTunes, Spotify and Podbean.

In episode #2 I interview Gregory from the UK about his many years of trying to get a Lyme diagnosis, and the subsequent cover up by his doctors of their missed diagnosis, turns a medical error into criminal intent.

Episode #3 is with Donna from Canada. She woke up thinking her surgery was over...until she heard the surgeon say "scalpel please" and felt him cut into her abdomen.

In the 4th episode, "The Gift of Cancer", Kelly Anne shares how her doctor failed to tell her she had cancer and did a procedure that spread it to her other organs.


I would appreciate feedback to improve the podcast, or ideas for guests.

And if you like it, please share it.

And kind comments on iTunes help get it promoted.

thanks,
Scott
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
I have just published an interview with author and psychologist Brian Hughes about his book "Psychology in Crisis" where we talk about the infamous PACE Trial.

I contend that bad psychological science / scientists like PACE / Wellesely are responsible for embedding a medical error in health care systems world wide causing harm to people living with the biological illness ME.

Episode #5 at: https://remediescounseling.com/podcast:-medical-error
 

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sb4

Senior Member
Messages
1,654
Location
United Kingdom
@ScottTriGuy Just out of interest, how do you get people on your podcast? Is it a case of just emailing and asking them?

Also, listened to first podcast. Was very good to hear Jeffs full story and I am glad you gave him lots of time to speak. Very good so far.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
...how do you get people on your podcast? Is it a case of just emailing and asking them?

Basically yeah - some of them are now patient advocates because of their medical error experiences and have already put their story on social media, so they are usually open to being a guest.

I have approached others who have used a pseudonym and we only recorded the audio and not the video (though the interview is still by video so we can see each other).


Was very good to hear Jeffs full story and I am glad you gave him lots of time to speak. Very good so far.

Thanks - I messed up my video recording of Jeff's interview (he was one of my very first interviews) so only have his audio, but plan to do a follow up with him to see what's happened since (like his setback when the therapist cranked his neck).

The counsellor in me knows that people that have survived trauma need space to tell their experience.

I also prefer to only know the bare details of a guest's experience before the interview, so that I am hearing it for the first time too - and I basically only have 3 questions from which more emerge as we chat:

- what was life like before?
- what medical error happened?
- what is life like now?
 

Gingergrrl

Senior Member
Messages
16,171
The counsellor in me knows that people that have survived trauma need space to tell their experience.

I also prefer to only know the bare details of a guest's experience before the interview, so that I am hearing it for the first time too - and I basically only have 3 questions from which more emerge as we chat:

- what was life like before?
- what medical error happened?
- what is life like now?

I love this entire approach and am looking forward to listening to your additional pod casts (besides the first one with Jeff which was amazing) :star::star::star:
 

Strawberry

Senior Member
Messages
2,107
Location
Seattle, WA USA
Just subscribed. I am looking forward to listening all weekend!

Thank you for all you do Scott! I like how you didn't make this about ME/CFS specifically, hopefully it gains more attention because of that. A possibility for gaining more subscriptions is to send the interview to local radio stations of the person interviewed, it gains local interest.

You are awesome. :angel:
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
Just subscribed. I am looking forward to listening all weekend!

Thank you for all you do Scott! I like how you didn't make this about ME/CFS specifically, hopefully it gains more attention because of that. A possibility for gaining more subscriptions is to send the interview to local radio stations of the person interviewed, it gains local interest.

You are awesome. :angel:

Thanks for the support @Strawberry - and thanks for the idea of sending to local radio stations, I'd not thought of that.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
In this podcast episode of Medical Error Interviews, I chat with lawyer Lisa Alioto - who once summited Mt Kilimanjaro - where 50% who attempt, fail and have to turn back.

But years later Lisa had an even bigger challenge: ME - with no turning back possible.

She experience debilitating symptoms like black outs and vision loss, compounded by a medical system seemingly willfully blind to her physical symptoms, and a series of medical errors by uneducated and careless physicians.

Fortunately, Lisa relied on her own research skills - and determined grit - to navigate through the medical ignorance and errors to regain some quality of life.

Lisa starts by telling how - in retrospect - physically climbing Mt Kilimanjaro would later prepare her mentally for her disabling symptoms and a health care system with its own blind spots…

https://www.patreon.com/posts/28668452

Lisa on summit of Mt Kili - she's 3rd from the right:
Lisa Mt Kilimanjaro.jpg
 
Messages
87
In this podcast episode of Medical Error Interviews, I chat with lawyer Lisa Alioto - who once summited Mt Kilimanjaro - where 50% who attempt, fail and have to turn back.

But years later Lisa had an even bigger challenge: ME - with no turning back possible.

She experience debilitating symptoms like black outs and vision loss, compounded by a medical system seemingly willfully blind to her physical symptoms, and a series of medical errors by uneducated and careless physicians.

Fortunately, Lisa relied on her own research skills - and determined grit - to navigate through the medical ignorance and errors to regain some quality of life.

Lisa starts by telling how - in retrospect - physically climbing Mt Kilimanjaro would later prepare her mentally for her disabling symptoms and a health care system with its own blind spots…

https://www.patreon.com/posts/28668452

Lisa on summit of Mt Kili - she's 3rd from the right:View attachment 33893
I am not able to listen to the podcast due to cognitive symptoms; what treatment did she try to get better once she had a diagnosis of ME?
 

Inara

Senior Member
Messages
455
Lisa starts by telling how - in retrospect - physically climbing Mt Kilimanjaro would later prepare her mentally for her disabling symptoms and a health care system with its own blind spots…
I didn't climb the Kilimanjaro :) but I loved hiking in the mountains (below 6h I would have been unhappy and frustrated). I like how Lisa compares the health system to a crazily hard mountain; I compare it with a jungle. I somehow have to struggle through. I learned not give up during my PhD studies where it was normal to see no results. Every PhD student has to deal with this frustration and keep on, or won't finish (which is ok; it's not like "turning back" is a bad decision. It's often reasonable given the circumstances - something I learned from hiking).

Thanks Scott for another interesting interview.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
I am not able to listen to the podcast due to cognitive symptoms; what treatment did she try to get better once she had a diagnosis of ME?

I anticipated that some folks in our community would not be able to listen, so I did show notes: https://remediescounseling.com/lisa-alioto-show-notes

But I don't recall Lisa mentioning anything other than LDN (low does naltrexone) as being helpful (beyond pacing, chair yoga, meditation) and had recently tried curcumin but didn't know if it was helping because she was going through the demands of post-house fire.

When we texted last week, she said she had more improvement with Abilify, low dose.

I've asked a couple of ME folks, but I don't know any one else who has tried Abilify.