My podcast: Medical Error Interviews

S

ScottTriGuy

Senior Member (Voting Rights)
Podcast MEI logo.jpg

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.


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 we're 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.

Podcast Secrets Stories.jpg

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.

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 Jeff.

Many folks on S4ME will be familiar with Jeff's incredible story and his efforts to bring awareness of how his CCI relates to his 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, please subscribe to the podcast there, and leave comments too (they help it get a higher rating = more awareness).

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
 
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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.
 
@ScottTriGuy, I've just listened to "The Gift of Cancer". I thought it might be too long but I couldn't stop listening. Kelly Anne spoke so well and with amazing acceptance. She's a great subject and an inspiration.

I thought letting her speak almost without interruption worked well because she certainly was able to tell her story very fluently.

I'm looking forward to listening to another one.

Congratulations and thanks.
 
Thanks @oldtimer

I'm still trying to wrap my head (and heart) around how Kelly Anne is able to forgive the doctor that will cause her early death. "Forgiveness is a gift you give yourself" sounds easier said than done.

I originally worried about the length of some interviews, but soon realized that - just like with counselling clients - having space and time to tell our stories is far more important than forcing them into a rather arbitrary time frame (like the 50 minute 'hour').

When potential guests ask how long the interview will be, I tell them that I'm not concerned with how much time it takes to share their experience, it will be what it will be.

I also think that story telling of our experiences has been a common element in our social evolution - whether in the shade of a tree or by the light of the fire, story telling has always been a way to share and learn from others' experiences. So I wonder if we are sort of 'pre-programmed' to become immersed in the (compelling, well told) experiences of others.
 
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 / Wessely are responsible for embedding a medical error in health care systems world wide causing harm to people living with the biological illness ME.

You can hear our conversation on iTunes, Spotify etc and also at Podbean.
 

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ScottTriGuy said:
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.

You can hear our conversation on iTunes, Spotify etc and also at Podbean.
Click to expand...
I was going to do a screenshot of this to share. Can you fix the typo, please. It’s “Wessely”
 
ScottTriGuy said:
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.

You can hear our conversation on iTunes, Spotify etc and also at Podbean.
Click to expand...
there is a large duplicated chunk of audio at the end that you might want to edit out(?)
also it's quite difficult to hear Brian at the very beginning (audio not so good) particularly with the music in the background.
hopefully constructive criticisms:)
 
In this 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 experienced 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://medicalerrorinterviews.podbean.com/mf/play/fu5fht/Lisa_Alioto_interview_audio_.mp3

Lisa at the summit of Mt Kili - she's 3rd from the right:

Lisa Mt Kilimanjaro.jpg
 
Show notes on this page
Paul Smith, an artist and self-described workaholic, for years experienced weird and increasingly debilitating symptoms, that would come for periods of time and mostly or completely dissipate.
Flu like symptoms, abdominal pain, muscle weakness, confusion - problems with his vision speech and balance - breathing problems where felt like he was suffocating
These symptoms were so intense that at times Paul felt like he was going to die, and so he wrote letters to his children.
Doctors dismissed his symptoms. Doctors labeled Paul with a somatization diagnosis, basically saying he wasn’t physically sick, just mentally...

But Paul did not give up. Eventually he found a couple of doctors - his ‘heroes’ - and he was finally and correctly - after 20+ years since the symptoms started - diagnosed with D-Lactic Acidosis, which is an over growth of bacteria in the gut, flooding Paul’s body with its neurotoxin.
Paul thinks many other people with other diagnosis like ME/CFS or somatization, may also have bacterial over growth in their guts.
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Very interesting. My symptoms all disappeared when I took erythromycin. I've been on several courses of it now and my gut bugs appear to be developing more and more resistance to it, unfortunately, and as a result the effect is getting weaker and weaker. The other problem with erythromycin is that it doesn't actually kill bugs. It restricts their growth. As a result it is vital to prescribe courses which are high enough in dose and go on long enough to allow the body to kill it off, but this hasn't happened for me - I'm at my doctor's mercy.

Erythromycin displays bacteriostatic activity or inhibits growth of bacteria, especially at higher concentrations.
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Source : https://en.wikipedia.org/wiki/Erythromycin#Pharmacology

A bacteriostatic agent or bacteriostat, abbreviated Bstatic, is a biological or chemical agent that stops bacteria from reproducing, while not necessarily killing them otherwise. Depending on their application, bacteriostatic antibiotics, disinfectants, antiseptics and preservatives can be distinguished. When bacteriostatic antimicrobials are used, the duration of therapy must be sufficient to allow host defense mechanisms to eradicate the bacteria. Upon removal of the bacteriostat, the bacteria usually start to grow again. This is in contrast to bactericides, which kill bacteria.
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Source : https://en.wikipedia.org/wiki/Bacteriostatic_agent
 
I just watched the interview with Conrad and am appalled at the litany of poor medical treatment. What a tragedy.

I've seen the shocking but fortunately temporary effects of antidepressants on two close family members, however I wasn't aware that they could cause permanent brain damage.

A few years ago I questioned my GP who wanted to prescribe an anti-depressant for mild anxiety during a family crisis and she mumbled that depression and anxiety were two sides of the same coin. It seems they are prescribed for anything that ails you.

I think Conrad is right that doctors treat a lot of diseases very well but "just don't know what drugs do" because they depend on pharmaceutical companies for their education about them. Hopefully a class action somewhere will put a stop to the willy-nilly prescribing of antidepressants.
 
Andrea Vedeler: The Norwegian Dilemma: Let ‘rehab’ make her even sicker for disability support, or have no income?
August 30, 2019
The Norwegian health care system makes some patients sicker - sometimes permanently.

Andrea is quite ill and very disabled - she is only well enough to leave her home about once a month.

But Andrea has a Hobson’s Choice: Live at a work place rehab institution for a month or live without income.

Medical error takes many forms. A misunderstanding of an illness has - and does - lead to medical harm and death.

In Norway, bureaucrats have created a system that essentially requires sick and disabled patients, in order to be eligible for long term disability, live for 4 weeks at a rehab designed to return them to work.

But for some sick and disabled patients - like Andrea - travel to the rehab and its environment and activities will make them even sicker. Sometimes permanently.

This leaves Andrea with a dilemma: get sicker - perhaps permanently - to get disability support to live, or remain less sick but live without income?
Click to expand...


is this who I think it is?
 
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