Medical Error Interviews Podcast
Mike Eisenberg: To Err Is Human: A documentary about medical error and patient safety

Mike Eisenberg: To Err Is Human: A documentary about medical error and patient safety

September 13, 2019

The Sheridan family knows first hand the devastation caused by medical error.

Sue and Pat’s newborn son Cal, due to misdiagnosing his jaundice, was brain damaged. Cal now lives with significant cerebral palsy.

Years later, Pat was correctly diagnosed with cancer, but for 6 months a pathology report failed to be communicated to the doctor or Pat. Pat died of cancer at age 45.

In this episode of Medical Error Interviews, I chat with documentary filmmaker Mike Eisenberg about his film To Err Is Human and about the Sheridan family and the state of patient safety.

Mike is the son of late patient safety pioneer Dr John M Eisenberg, and as you will hear Mike say, when he started looking into medical errors and patient safety, he felt compelled to carry on his father’s legacy.

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Mike Eisenberg Show Notes

Following his Father's footsteps
 
0:07:00
Mike was born in Philadelphia - childhood mostly in Maryland - but as a child was not interested in health care, even though his father was a patient safety advocate - as documentary filmmaker he wanted to tell stories otherwise not seen - fiction is harder and more expensive to make into film - the documentary path led down the path to make "To Err is Human"
0:09:30
About 3.5 years ago it started with a short film on AHRQ: Agency for Health Research and Quality, the organization Mike's father started and was the Director until he passed away in 2002 - there was annual debates over AHRQ's budget and attempts to slash it - but AHRQ has far less money they should given their role
0:10:30
Started the documentary by driving to DC, pay out of pocket, and interview his father's old colleagues about AHRQ's role that the public knows nothing about - themes of medical error, patient safety and improving care emerged - it was evident to Mike that conversation was no longer being had - if felt to Mike it was his responsibility to carry on his father's work
0:11:30
We, including his production partners Matt Downe and Kailey Brackett try to stay positive in tone and show what happens when people take this seriously - focus on the process to make things better
0:12:45
Report in late '90s titled To Err is Human, Building a Safer System - a report that used research that determined how bad medical error was - the data was shocking - it said 44,000 to 98,000 died each year from medical error - that was brand new concept, made new headlines, President Clinton said it would be tackled
0:14:00
At the time, those numbers were questioned - but today one study, Marty Macquarrie out of John Hopkins that says 251,000 die each year - and John James's study that says between 240,000 and 440,000 die each year from medical error - hard to quantify because CDC (Centre for Disease Control) doesn't have a box to tick for 'death by medical error' - even conservative estimates have medical error as 3rd leading cause of death
0:16:00
We compare how many plane crashes, 7 or 8, would happen each day to equal medical error deaths each day - a staggering number, almost the same as the opioid epidemic - the important question is not accuracy of numbers, but how to get accurate numbers
 
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The Sheridan family and medical errors
 
0:18:00
There is not a consensus around medical error death numbers - sometimes people die at home from hospital errors - part of the reason we've not seen more solutions is that the public, especially Americans, have been trained to treat the medical system: that physicians don't make mistakes, they are right all the time
0:19:45
The real reason we've not seen change in patient safety is because physicians have not embraced the patient in this process - some health care systems have, they visited over 250 health care systems - many of them doing interesting things to help curb error, but only a few have really engaged the patient
0:21:00
If a Hospital engages patients in a patient safety process, then the Hospital is admitting it makes mistakes, and that admission is considered guilt - but Med Star Health, especially out of Georgetown, show promise: they had a public facing explanation of an error that was prevented - great message that most of these errors are preventable
0:22:30
It is easy to say to public we are humans too and make mistakes, and most are not egregious or intentional - most hospital surgeries have a practice called 'stop the line' and reasses if things are organized correctly, a bean counter will say it is not efficient and costs money, but it costs less then lawsuits
0:24:15
Regarding body cameras worn by physicians for patient safety, Mike considered including that aspect but thought it was too touchy subject - solutions for other societal problems can be embraced by health care - aviation is the most obvious, they interviewed Sully Sullenburger of the water landing in the Hudson River - vital health care takes a look outside its own walls
0:25:45
In Toronto we found a surgical team using video and other data to show when errors are most likely to occur and to use that data for better safety - 'hand offs' to other staff is obvious time things can go wrong
0:27:45
Improving patient safety is more than preventing law suits - the real 'bottom line' is about lives not profit - we expect health care to do what it is supposed to do and not cause new problems - what's important is communication with the patient
0:29:15
One of the stories in our film is about Sue Sheridan - her family experienced 2 medical errors - the 1st was her son Cal who has cerebral palsy and got that at 5 days old because of a small over sight by not performing an available and cheap test when he was born with jaundice - the other case is about the father Pat who was diagnosed with cancer - they thought it was benign but sent sample for pathology examination
 
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Aviation Culture vs Medical Culture
 
0:30:15
The results showed it was malignant, dangerous and needed to be removed - but those results didn't get through for 6 months because it was an over looked fax - so Pat didn't get treatment and died of cancer - but what doesn't go on the death certificate is that he lost 6 months of treatment
0:31:30
Organizations like the Society for Diagnostic Error in Medicine (SDIM) is leading the charge on diagnostic errors
0:33:00
The biggest difference between airline industry culture and medical industry culture is the lack of transparency of the latter - recently an airplane window cracked and fell off and sucked a woman out the window, that was the 1st aviation accident that lead to a death in years - studies have found that most plane tragedies are not accidents
0:34:00
Recently Boeing had 2 large plane crashes and they've been open about determining what went wrong and how to fix it - the same thing should happen in health care
0:35:00
In aviation pilots have to re-take their test every 5 years to prove their competence - don't do that with driving cars, just give licenses when people are 17 and assume they'll good for the rest of their life - same thing with health care - we need to be honest about where health care is weak and where it can be improved
0:36:30
In aviation, airlines work together globally to improve safety for all airlines - but this is not the practice in most hospitals - but there are exceptions that share their research and date like Inter Mountain Heath Care in Utah, and some in Boston that have embraced imperfection - when an error happens they gather the team to learn how to prevent it in the future, as opposed to how avoid bad PR (public relations), or blaming someone and firing them - that's not how you fix the problem
0:38:15
In the documentary, Sue's family engaged in litigation, they 'won' in one instance of medical error, but not in the other - Mike chose not to focus on the litigation angle in the documentary - for the medical error to Sue's son, they did not get a resolution - Sue has turned her entire life into advocacy - one of her achievements is that the test her son should have received - bilirubin - is now a requirement
0:39:45
For Sue's husband's medical error - been about 18 years since her husband died, and the hospital recently had a screening of the documentary and a panel discussion afterward - the first time the hospital had openly discussed the case with its own staff - the pathologist had told Sue that it was not his responsibility to make sure the info he sent got through to the receiver
 
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Physicians have highest suicide rate
 
0:41:45
The US will have a shortage of physicians by 2024 often due to burnout - because they are also enterpreneurs - they have one of the most challenging jobs in the world
0:43:00
Physicians have highest suicide rate of all professions - rampant in physician culture, especially clinicians - Mike's friends that are doctors are over worked and its scares him - they needed to be treated right - but its hard to expect humans to be perfect all the time when they are not treated that way - when things go wrong, the hospital worries more about its image then the people, its a systems vs people problem - it promotes volume and that is not conducive to reliability
0:45:30
Mike calls upon patients to be a voice, its not just a hospital problem - don't have to go to school for many years, just need to listen and look - can avoid a lot of these mistakes if they listened to patients, and patients felt empowered to engage
0:47:00
Re physician suicide, it is an individual choice - wouldn't be surprised if financial problems are a factor - many start with 6 figure deaths, have families, and witness trauma every day, its a tough job - Mike has screened his film a lot in hospitals and he hears staff worried about losing job if point out errors - there is heirarchy in health care that is not healthy - old gaurd is not embracing new reality
0:50:00
One hospital claimed they had solved physician burnout by mandating that there was at least 6 hours between shifts - but that is still not reasonable - lessen to learn is suicide is individual, but common is that they feel their profession is not respected, appreciated - the message is that its been working for 70 years, why change now - but now is the time to change to take patient safety seriously
0:52:00
Fixing patient safety is about how care is delivered, and how we treat health care workers
0:53:00
In aviation, they do not permit pilots to fly if they haven't had a specific number of hourss of sleep, or if they've had even one drink of alcohol - some hospitals have similar standards, but why is that not a federal mandate? The Agency for Healthcare and Research Quality (AHRQ) is important to learn where to get better - but not much done with that info because they are underfunded but could cause huge change
0:55:00
This is not new issue, its been around for 20 years - need to have discussions about access to care, about diversity and care - but they are only improved if thought from a patient safety perspective
 
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Media and its messages
 
0:56:15
Aviation has done it well because they've collaborated globally, but in the US hospital are autonomous and its hard to develop a plan that all will follow - while aviation has an organization that investigates crashes, that doesn't exist in health care - why is that not happening in health care? Because one person dies at a time.
0:58:00
In aviation, they 2 or 3 hundred at a time and those stories are on all the front pages - but when someone dies from communication breakdown there isn't the same collective impact or response - it boggles the mind
0:59:00
Since his documentary released, seen a documentary on HBO called Bleed Out, made by a comedian who tells about his family's experience with medical error over the years - also Bleeding Edge on Netflix about tthe FDA's lackadaisical approval of medical devices - 3 documentaries coming out in 1 year is progress - but how to make progress on the national stage? Mike working collaboratively on a project to put patient safety on the map
1:01:30
Media has a responsibility in patient safety too - Mike says every day there are 4 or 5 stories on gun violence in Chicago, where he lives - and that problem persists despite local government action to fix it - in health care errors will always occur, but can learn from errors to prevent future harm - but to fix the problem requires engaging the public
1:03:15
Media is hugely responsible for what people care about - the media has all the power about what people care about - essentially telling the political atmosphere what it should care about - Americans choose what they want to protest about - we need a better way to show the scope and scale of medical error without blaming doctors and nurses - there is no villain in patient safety - malpractice is different from patient safety
1:05:00
We need a villain, somebody to blame - last year at Vanderbilt, a nurse was thrown under the bus for making an error that resulted in death, but it was actually a system failure that allowed her humanness to make an error, it was not her fault - instead of the hospital changing the system, they throw an employee under the bus, and she went to jail - then we wonder why people don't report errors when they see them
1:06:45
A culture shift in health care is needed, and it must come from the top - by working together we can send a message to 'the top' to make a change
1:08:00
Most patients want to be treated with honesty and transparency and will work together if something goes wrong - but that's not usually how it happens, it is usually a cover up, or denial, or this is how health care works and sucks to be you - but a culture of lawsuits has emerged as the way to get info out of hospitals - its not about money for most of these people
 
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Less money, more transparency
 
1:09:15
In Sue's case, she sued for less money in exchange for greater transparency - we should get away from lawsuit culture and move toward working together
1:10:20
Mike has been fortunate to travel around the country to talk to people who knew his father {Founder of AHRQ} and sharing the film - a lot of people share the sentiment and passion he had still inspires them today - it is really cool as his son to hear that 17 years after passed away that he still has an impact on the health care system
1:11:00
Mike feels that a lot of the work that his father did - you can see clips of him on Youtube addressing Congress - is gone - don't why - was it because of his leadership, or because it was the right time? Mike thinks we need another leader who has the ability to bring people together - the way culture is set up, we need a celebrity - Dennis Quaid, famous actor, almost had his 2 sons die due to medical error and he made a short documentary and started a foundation
1:12:30
There are other examples, Serena Williams who nearly died due to preventable harm and racism - problem is 'medical error' is a very scary term and it is applied to all doctors, nurses, surgeons and it shouldn't be that way - there is resistance by the health care industry to embrace the terms 'patient safety' etc and not as an offensive term
1:14:00
Mike is proud of father's legacy, but worries that it has been forgotten by the people who spearheaded it in the first place - we need a superhero who can jump up and say these are issues we should be talking about
1:15:00
Mike is now balancing promoting To Err is Human and speaking at medical conferences and symposiums and screened the film hundreds of times - we need to go one person at a time, change one mind at a time
1:17:00
There will be a screening of the film in Ottawa on World Patient Safety Day {Sept 17th} and for the first time there will a free online screening of the movie - to find link for free online screening check out his website ToErrIsHumanFilm.com and through twitter @ToErrIsHumanDoc
1:18:20
Website also lists other screenings in local areas - if you're interested in hosting a screening for your community, contact Mike - they tried to make the film so it is a conversation starter - but this issue is not solved, so we need to remind people where we are at, so we can continue in the right direction
 
Connect with Mike
 
Twitter: To Err is Human @ToErrIsHumanDoc
 
 
 
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______________________________________________
 
Podcast Host and Counsellor Scott Simpson
 
Do you need an experienced counsellor for your medical error trauma?
 
Or for living with a chronic illness?
 
You can book an online video counseling appointment with me at RemediesCounseling.com
 
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Elizabeth Hopkins: “Please kill me. Please let me die.” How patient shaming by doctors harms and kills.

Elizabeth Hopkins: “Please kill me. Please let me die.” How patient shaming by doctors harms and kills.

September 6, 2019

Elizabeth went to the hospital emergency department with intense abdominal pain and was shamed by the doctor for wasting his time.

A few days later, Elizabeth was in even more pain and started projectile vomiting - she returned to the hospital and they found what they missed the first time: Elizabeth’s bowel had ruptured and the infection had spilled out of her colon and she was in life-threatening sepsis.

Then Elizabeth’s health care got much worse. 

The doctor gave Elizabeth 2 options: simple minimally invasive laparoscopic surgery to drain the infection filled abscesses and let the bowel heal, or invasive surgery. Elizabeth asked for the simple procedure to drain the abscesses.

When she woke from surgery the intense pain felt like she had been cut in half - she begged the hospital staff to kill her to escape the pain.

Then she found out they had removed 10 inches of her bowel and left her with an ostomy bag.

SHOW NOTES

Growing up with a parent with PTSD

0:05:50
Elizabeth's father was in the military, so they moved every few years - normal for her, but didn't know same people all her life - father was Military Police and Korean War veteran with PTSD (post traumatic stress disorder) - he had rages, inability to handle stress - fairly high up in military and investigated military suicide - he was hospitalized for a couple of weeks during the Korean War for 'shell shock' - lived on the sharp edge of his emotions
0:08:00
Be wary, be quiet - very quiet family, kids well behaved - {sound of ambulance siren in background} - Elizabeth says she is triggered by the ambulance siren that goes by several times a day - she's had PTSD since she was 16 - PTSD had gotten some better, but worse in the last 5 years since the medical error
0:09:45
Family moved to Ottawa when Elizabeth was 15 for a year before her father retired and they moved to Nova Scotia - Elizabeth went to university in New Brunswick when she was 20 - her Mom got sick and during Elizabeth's 2nd year, her mother was diagnosed with bowel cancer - both her parents would die of bowel cancer - mother battled for 4 years and 4 surgeries
0:11:00
Elizabeth graduated university and came home to work and care for her mother - Elizabeth worked as a reporter for a small town newspaper for 3 years, then a photo tech but kept connected to the newspaper - went back to school a couple of times, in 2011 to community college to take Information Technology - had been working with intellectually challenges adults and had a bad back with no chance of advancement
0:13:00
2014 Elizabeth got sick - working as a caregiver for a man with MS (multiple sclerosis) - and working another job and not eating much for about 3 months - August 2014 Elizabeth's bowel stopped functioning - a few days later started to hurt badly - no past history of gastro intestinal problems - Elizabeth was just a few years older than when her Mom was diagnosed with bowel cancer
0:15:20
The pain so bad she went to an emergency room (ER) - Elizabeth does have high blood pressure and arthritis but had never been sick - told ER she had pain in lower left abdomen - doctor said she had good bowel sounds and told her to go home and eat something, that she was only constipated - Elizabeth was relieved hearing she was going to be okay
 
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Shamed by emergency room doctor
 
0:17:00
Elizabeth didn't really believe him because she'd never had pain like this before - doctor didn't do any blood tests or xrays, just sent her home at 11pm and and told her ER was for emergencies - Elizabeth felt shamed, like she was abusing the system
0:19:30
Elizabeth went to work for 8am - at about 3:30am Wed Sept 10th, Elizabeth woke up incredible pain and projectile vomiting - Elizabeth knew something was wrong, but also knew she had a 15 hour shift ahead - she went to work but spent much of the day laying on her client's bathroom floor vomiting - while also trying to take care of disabled client - Elizabeth in incredible agony and could barely walk - got home at 11pm
0:20:45
Elizabeth spent the next few days on her couch, thinking she should go to the hospital, but had been shamed - she couldn't eat - Elizabeth's roommate came home Friday Sept 13th - she asked her roommate to take her to the ER - they took some blood tests and xray - results showed diverticulitis - 'pockets' in the bowel where food / seeds can get trapped and cause infection and to be treated with antibiotics or can get sepsis and die
0:23:30
Elizabeth's white blood cell count was 28.02 and normal is 9 - but xray didn't show anything, and no surgery was mentioned - Elizabeth was given gastrograffin drink and told to come back in the morning for another drink of gastrograffin to prepare for a CAT scan
0:24:40
Resident physician took Elizabeth to small private room - he said CAT scan shows 4 holes in her intestine - he said can do 1 of 2 things: drain the abscesses and allow the bowel to heal on its own, or #2 is surgery, but he didn't say what kind - Elizabeth said 'the first option'
0:26:00
The abscesses were spilling infection outside her colon - they didn't say, but Elizabeth figured she had peritonitis because she had been walking around for 4 days with a ruptured bowel - Elizabeth was scared and thought about leaving the hospital - Elizabeth knew of a woman who had died of peritonitis induced heart attack within 12 hours of her bowel rupturing during a colonoscopy
0:28:00
Resident physician returns and says they will have to do surgery and need her to sign a form without further explanation - Elizabeth figured it was to drain the abscesses - and be done by simple laparoscopic surgery - Elizabeth could barely see because of pain - but could not see the form to read it, so she signed it
 
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Begging to die
 
0:30:00
Nurse prepped Elizabeth and asked her some questions, including if she was wearing contacts lenses - they hooked Elizabeth up to an IV and gave her some pain killers and she waited 5 - 6 hours
0:32:00
They prepped Elizabeth for the surgery - asked if she had problems with blood products or allergies and confirmed she was at the hospital a year earlier for anaphylaxis - they asked if she was allergic to quinapril - anaethesiologist checked her throat and neck flexibility - but no one during all those hours asked Elizabeth if she understood what procedure she was about to undergo
0:33:45
Surgeon spoke to Elizabeth, shook her hand, a very nice man - Elizabeth felt calm, in good hands, and safe - the next things Elizabeth remembers is waking up feeling like she was cut in two - screaming, couldn't catch her breath, and tried to sit up - she couldn't see but could hear the anesthesiologist say 'No Elizabeth' - then people were holding her down, laying on top of her
0:35:15
"I felt like I had been cut in half horizontally" - Elizabeth remembers thinking it was like something out of a Stephen King novel - like a monster with claws cut her into twos - the next thing she remembers is screaming and crying and begging to die - 'please someone kill me, please let me die' - more pain than her ruptured bowel
0:36:50
Elizabeth knew something had gone horribly wrong - she was sweating from the pain - the nurse told Elizabeth that she had lost her sigmoid colon and now had an ostomy - a bag that is connected to accept waste from her colon
0:38:00
Elizabeth know also had an art line in her chest to put medications directly into her system - the nurse asked if Elizabeth was still feeling suicidal, that she must have had a reaction to the anaesthesia - but Elizabeth was still in a huge amount of pain and wanted death to escape it - her pain was not being managed
0:40:00
The nurse told Elizabeth she was emotionally overwrought when first brought into the recover room and asked if Elizabeth wanted to see a psychiatrist - Elizabeth's sight is worse because her dirty contacts are still in her eyes - Elizabeth also develops sepsis, she was already septic before the surgery - her white blood count was 25, which is very septic, but had been at 28 the night before
0:42:00
The notes from the CT scan did not mention a ruptured bowel - but the forensic report said she had one hole in her bowel - it could've been repaired with colonoscopy - but Elizabeth lost 10 inches of bowel - she was very septic and they pumped her full of antibiotics - her white blood cell count shot up to 36, 'critical'
 
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Sepsis
 
0:43:30
Elizabeth so pumped full of fluids to flush out sepsis she couldn't bend her legs - but nobody told Elizabeth she was septic - a couple of young surgeons told Elizabeth that surgery went well - Elizabeth said she didn't believe in surgery and the doctor laughed at her and asked if that was a religious thing - they apparently did not know Elizabeth had surgery she did not expect
0:45:00
Only when Elizabeth got her medical records did she find out that her insestines had been glued to her peritoneum and had to be cut or burned off, a result of bowels bursting - Elizabeth does not have a spleen that was removed without her permission after a car accident, and that started her PTSD
0:46:30
Her instestines we glued to her liver, and pushing on her bladder, which was partially collapsed - it was bad and they had to do a lot of work - Elizabeth was in hospital for 11 days with infections needing IV antibiotics - the surgeon finally comes to see her and says they'll send her home next day - Elizabeth is happy but still in horrible pain
0:48:00
The next morning a different physician says that Elizabeth's white blood count is 11, and normal is 9, so they are iffy about sending her home - but they did with antibiotics and a bottle of morphine - Elizabeth spent 4 days at home in horrible pain and getting sicker and sicker - used all the morphine if first couple of days - and had to move to another apartment
0:49:45
Elizabeth calls a help line to speak with a nurse and tells her about vomiting and other symptoms - the nurse told Elizabeth to go back to the ER and was readmitted with a small bowel obstruction and the abscesses had grown, multiple infections, colitis and other things - kept Elizabeth for 2 weeks with IV antiobitics and pain killers
0:50:50
Elizabeth's health worsened because they had moved her from IV antibiotics to antibiotic pills - Elizabeth was released when the infection was under control again, 2 weeks later
0:52:00
Elizabeth was in shock for the first 3 months - she could have a conversation but couldn't think right - dissociative - couldn't believe this was happening to her, or had not been offered psychiatric help because she told them she was suicidal - when she told people she had surgery she didn't want, they dismissed her
0:53:00
Elizabeth had no depression before surgery, but sense of violation, like she'd been raped, caused suicidal feelings - those feelings not so strong now, but for 4 years Elizabeth woke up every day thinking "I want to die" - sometimes wake up in the middle of the night screaming - the trauma constantly replayed in her head - PTSD was overwhelming
 
 
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Tomophobia
 
0:55:00
Elizabeth may have appeared 'normal' to others, but she wasn't laughing like she did before - complelely unfocused, like in a dream - Elizabeth sees her GP a few months later and says to the GP "Look what they did to me" tells the GP she just wants to die, so the GP puts Elizabeth on antidepressants to try to keep her alive
0:56:15
Elizabeth has "tomophobia", a fear of invasive events that can be traced back to an unwanted splenectomy after a car accident when she was 16 years old, and had tried to escape the hospital then - Elizabeth had been asymptomatic for PTSD since 2009, but was re-triggered by the bowel removal surgery
0:58:30
In the late 70s, Elizabeth thought the concussion from the car accident was causing her anger and rage until she read about 'shell shock' symptoms of Vietnam War vets and thought their symptoms were like hers - but she didn't receive any support
0:59:30
25 years later and another traumatic event caused PTSD and therapy helped some - venting, talking and writing about it always helped - being able to take control also helps a lot - this last trauma has not been so bad because she's been able to talk about it and file a complaint to the Nova Scotia College of Physicians, but they didn't believe her and dismissed her complaint
1:00:30
Elizabeth didn't want any one to get into trouble, she justed wanted to know how and why it happened to her - the surgeon was not very honest, his report said he was surprised Elizabeth was claiming she wasn't properly informed, then descended into an ad hominen attack on Elizabeth's character and made her sound ridiculous and like a crazy person
1:02:00
Surgeon also wrote that Elizabeth had been diagnosed with a sexually transmitted disease, dyspareunia - this shocked Elizabeth, almost as much as waking up with an ostomy bag - but Elizabeth had blood tests that showed no infection - Elizabeth knew this was the surgeon trying to discredit her - Elizabeth asked the College of Physicians to ask for the notes the surgeon claims show an STD, but they didn't - more institutional betrayal
1:04:00
Elizabeth's GP received a copy of the surgeon's report - but there was nothing about informed consent - the GP tried to defend the surgeon - but Elizabeth pointed out they had 5 hours and no body talked to her about what procedure she was going to have
1:06:00
Elizabeth thinks they are good people, but too routine and easy to forget if no check list in place - this unwanted surgery is the most horrid inhumane thing any one has ever done to Elizabeth - but she feels conflicted: on the one hand, they were working to save her, and on the other hand, she didn't want bowel surgery
1:07:45
This should have been a 'never event' - it never should have happened - but writing letters and complaints has helped - Elizabeth likens it to Restorative Justice where the victim gets to tell the perpetrator how the crime has affected them
 
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Making meaning (and cookies)
1:09:45
Having the College of Physicians dismiss Elizabeth's complaint and believe the surgeon's lies, makes her PTSD worse - Elizabeth just wanted him to accept responsbility - Elizabeth's brother is a lawyer and said suing is useless, only 2% find in favor of the victim - Elizabeth just wants people to learn from it so others don't have the same experience
1:11:15
Elizabeth is writing a mental wellness cook book using a lot of her Mom's old recipes - Elizabeth is also a graphic designer and will design the book and include information about mental wellness - people have been able to accomplish a lot in spite of mental illness - Madame Currie had depression, Veronica Lake had schizophrenia
1:13:00
A lot of the cook book is about depression and PTSD, but includes facts and figures, like countries where the suicide rate has decreased - her book is titled Mental Health Cook Book, she's illustrating it herself and is half way done - but it has helped distract her from PTSD
1:14:00
Elizabeth makes dinner each day for an intellectually challenged friend, and this adds more meaning and reason to live - Elizabeth has believed in the righ to die since she was 15 and her mother was dying from cancer - but also believes in the right to life, so both sides of the right to die debate
1:16:45
Elizabeth does not want to point fingers at specific doctors, she beleives they meant well - but what happened to her can happen to any one - sometimes PTSD can be so bad you'd rather die
1:18:00
Elizabeth is still healing physically, some lessened pain, and her bowel is working a bit better - emotionally quite a bit better, but she still has PTSD and will last a long time - Elizabeth tries to find the positives in things
1:19:15
Sometimes anesthesia can mess up a person's brain - Elizabeth was not depressed before the bowel surgery - but her PTSD has always been treatment resistant - but some people do respond to trauma therapy - Elizabeth finds writing it down both difficult and therapeutic
1:21:25
From Elizabeth's experience, anger - even justifiable anger - is darker and more malignant than any cancer - doesn't do any thing to person you're angry at, it destroys you - Elizabeth suggests video recording the informed consent - there was a doctor who lost her license for performing multiple surgeries and taking out body parts without getting consent - she had 27 patients with adverse outcomes
1:22:45
You can only make decisions based on what you are told - a doctor is only as good as the information that passes back and forth with the patient - and recording the informed consent is safety for the hospital and the patient
 
Connect with Elizabeth
_____________________________________
 
Need an experienced counsellor for medical error, or living with a chronic illness, or LGBT issues?
 
You can book an online video counseling appointment with me, Scott Simpson, at Remedies Counseling.
 
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Andrea Vedeler: The Norwegian Dilemma: Let ‘rehab’ make her even sicker for disability support, or have no income?

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?

SHOW NOTES

Idyllic Childhood, until...

04:50
Andrea grew up in a small town outside of Oslo (Norway) - small safe neighbourhood - born in 1987 - Andrea is a millenial and looking back it seemed almost absurdly idyllic - so a very nice childhood, not athletic but very active, hiking, swimming, biking, baseball - only child, parents are divorced, but very functional divorce and good environment
 
06:30
Andrea loved school, excellent student, loved reading, always 3 books at a time so there was no gap without a book - worse nightmare in childhood and adolescent, biggest horror she could imagine because she loooooved reading - great teachers, friends - read a lot at home
 
07:45
Mostly fiction, had read all of her mother's books in Norwegian by the time she was 10 or 11, so had to start reading Enlgish books - a lot of sci fi and fantasy, because they came in series with lots of pages - reading a big part of her life until she started getting ill
 
08:45
Didn't get diagnosed with ME (Myalgic Encephalomyelitis) until 2016, but in 2006 at age 19 years, Andrea got a series of infections over 2 months - had never been ill before, never missed a single day of school - after being sick, Andrea tried going to a spin class but couldn't even finish the warm up because lung capacity only 50%
 
09:50
Lung capacity slowly improved over the next year, but a lot of stomach problems and pain emerged - but it took 3 years to discover she had lactose intolerance, a rarity in Scandinavia, probably a result of antibiotics - inflammed easophagus, ulcer , developed asthma - went to study at university in another city, but there was always some health issue popping up, a virus, an infection
 
11:15
More tired and exhausted each semester, but still managing to study full time, work part time, volunteer, working out most of the time - loved the university life - but still had bouts of illness
 
12:20
Was working out 8 times a week, running, strength training - so periods of total functioning - but periods of time of illness and severity increased - really struggling by end of 2010, by early 2011 barely managed school course work - then went to Brazil to study for a year

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Better in Brazil

13:20
With the warm climate, reduced work load, afternoons spent on the beach, and she felt really good - in 2012 returned to study in Trondheim - was in the best shape of her life in autumn 2012 - doing her graduate studies, a lot of volunteering, and working - but only lasted about 12 months, in 2013 started struggling
 
14:35
Andrea realized she was making herself sicker by pushing through to do more and saying yes to more things - realized she had to slow down - but actually doing it is a lot harder
 
15:50
By starting something new she would get a boost in motivation, so had a lot on her plate, but it was a lot of fun and enjoyed responsibility and high quality work - but spinning plates and impossible to keep up
 
17:10
Andrea would usually crash at the beginning of summer vacation, and spend all summer recovering until the fall semester, but in 2013 she wasn't recovered, she was still exhausted
 
18:10
Andrea's 'crash' was like a burnout, lack of energy, lack of motivation, getting recurring infections - but the character of her crashes changed in Sept 2013
 
19:05
Andrea went for her usual mornig run, but only got about 500 metres - crawled home and that afternoon had her first migraine - it lasted 5 days and was her first ME-like crash - paralyzed for 5 days, the most pain, where nothing else existed but the pain - that was the start of what became ME
 
20:20
Extremely scary, frightening - never experienced her body compeletely shutting down - but during the migraine, the pain was so overwhelming, she couldn't think / experience emotions - when the migraine was over she felt totally fine and sort of forgot about it - so relieved to feel okay and focused on getting back to every day life until it happened again a month later
 
21:50
Went to her doctor, and Andrea agreed it was probably over working and stress - got a note for her studies and moved back to Oslo to work on her Thesis, and working and volunteering - but then collapsed - couldn't do anything due to physical and cognitive exhaustion
 
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Chiropractor Mayhem

23:20
Andrea improved a lot over the next year - went back to finish her Thesis - even though could only work 25% of time - felt hopeful she was over the 'burnout' - because 25% functioning felt so good compared to before when non-functioning - telling herself everything will be fine, return to work and working out
 
24:50
But it wasn't fine - 3 weeks after returning to work she got sick again - went to her doctor to say that she is not recovering like before - he asked if she considered if she may have 'chronic fatigue syndrome' so they started to look into that - also had neck problems so went to a chiropractor and had a severe immunological reaction to that adjustment
 
25:50
Chiropractor warned Andrea she may have a reaction for a few days but it will pass - but Andrea got really sick for almost 2 months of flu like symptoms, painful and swollen and red back - lie in bed screaming from pain - as pain calmed, flu symptoms remained for 2 months
 
27:50
Chiropractor helped with pain, but flu like symptoms stuck and they recognized she had ME - in Norway, ME and CFS (chronic fatigue syndrome) are 2 different illnesses - in Norway, CFS is centered around fatigue without other symptoms - but ME patients fulfill the Canadian Consensus Criteria
 
29:35
Andrea, being a 'nerd', had already researched ME so was not surprised by the diagnosis - she had every symptom - but it was a relief to get official diagnosis - doctor said that most people get back to normal life in 5 - 7 years - and some people do improve and can return to part time work
 
31:05
Andrea had seen a psychologist when she thought she was 'burned out' and had been through that part of the Norwegian health care system, and the psychologists did not believe there was any thing wrong mentally - doctors don't know a lot about ME, but there is not a lot to know - Andrea was lucky that her doctors did not pass judgement and acknowledged she was sick and trying to get better
 
32:50
In Norway the guidelines for CFS and ME recommend patients attend a work related rehab facility - goal is to get patients back to work - also other patients, like from car accidents - it is a requirement to offer the rehab, but legally it cannot be demanded if the rehab causes harm
 
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Health vs Rehab Centre
 
34:00
On paper, they can't make you go to rehab, but in reality it is not that simple - people who are disabled start on a temporary govt benefit - to get permanent disability benefits, you must check all the boxes from the guidelines - the Work and Pension Dept evaluate the applications
 
35:20
A case worker would submit the permanent disability application, but a different dept would then decide - and if the patient has not completed all the guideline boxes, they are denied benefits - the patient has the right to appeal, but it will take 6 - 12 months and the patient receives no benefits - so very sick people may run out of food, medications, shelter while waiting
 
37:50
It is also hard to gather all the documentation needed during the temporary disability period - Andrea's doctors say she is too ill to attend a rehab center - and that it would probably make her sicker, at least temporarily, but some people get worse permanently - the 3 hours to travel to it is too much for Anrdrea's health - Andrea thinks she would survive rehab, but it would make her sicker
 
39:35
Andrea explains that car travel is so draining for some ME patients: vibrations, sound, visual stimulation, sitting up - Andrea is healtier in the summer, so if she took lots of pain meds and could rest for a week after, then she could do a 2 hour drive - but it will make her very ill with post exertional malaise and her doctor doesn't think rehab will help her
 
41:05
Andrea's dilemma: does she go to rehab and get sicker so she can get a report saying she is too sick to work and get long term disability, or does she not go to rehab and risk not having income for up to a year?
 
41:50
Fortunately Andrea has saved enough money to live on for a year, but others with ME are not so fortunate - so legally, sick patients can't be forced to go to rehab, but that is what they are doing
 
44:20
Andrea says the rehab may be helpful for mild ME patients or newly diagosed as it teaches about pacing (your energy) - mild patients with small children like the chance to go to the rehab to recover from the energy requirements at home - but no one believes rehab will 'treat' ME

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Hobson's choice...is not choice

45:30
Andrea says the dept of Work and Rehab needs info to make decisions, but they don't understand what they are asking
 
47:05
Andrea thinks it is a waste of money to send people to rehab for 4 weeks for evaluation - cheaper to have home visits
 
48:35
There are 6 or 7 rehabs in Norway that accept ME patients, but a lot of them are not recommended by the ME Association - but the system is only set up deal with all patients in one way
 
49:50
To deal with loss from being so ill, Andrea has adopted her Mother's motto: 'it does't help to be angry about it' - she hopes she's not sick forever, and she's adjusting and making the best of it - but also asks herself what does she want to do with her life given the situation
 
51:20
Andrea and her partner have bought a home - Andrea says she still has a future, not the one she planned or wanted, but there is a lot of good stuff in it - very fortunate, born in one of wealthiest and happiest countries with good welfare system - suppotive family except Grandmother who thinks a baby will fix things - great supportive friends
 
53:35
Even if there is no cure or treatment, Andrea's health is pretty stable - her functionality improves in the summer, but still mostly house bound - can leaved the house twice a week instead of once a month - Andrea has not given up hope she will improve - she hopes to have a family but not sure how they'll manage it
 
55:35
Andrea thinks the summer helps because it is sunny and warm and that improves circulation - she is hoping in a couple of years to try living in southern Europe for a few months and see how that affects her health - but all their family and friends are in Norway, so that's a consideration too
 
57:50
Our conversation will impact Andrea's energy and health - even though she rested up for the interview - she will not feel good tomorrow
 
59:20
Andrea thinks people who develop ME as slow onset have more time to get used to being sick than people who suddenly developed ME overnight, that would be harder to deal with
 
Connect with Andrea 
Twitter: @Vedeler
 
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___________________________________
 
Are you dealing with medical error and need an experienced counsellor? Or living with a chronic illness? Or have LGBT issues or any of life's challenges, you can book an online video counseling appointment with me - Scott Simpson - at Remedies Counseling
 
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Varda Burstyn: The Willful Denial of Multiple Chemical Sensitivity

Varda Burstyn: The Willful Denial of Multiple Chemical Sensitivity

August 23, 2019

Author and environmental advocate Varda Burstyn is living with Multiple Chemical Sensitivity (MCS) - an illness mostly ignored - or outright denied - in the health care system. Patients experiencing MCS symptoms are usually labeled psychosomatic or malingerers or worse. 

MCS is another example of a wide spread diagnostic mistake causing institutionalized medical harm by denying patients appropriate testing and access to treatment.

Varda’s family has numerous - and catastrophic - examples of medical error - including her mother and brother, requiring Varda to take on caretaker roles. In spite of this - or maybe because of it - Varda has become a force of nature in the environmental movement.

Over the years Varda’s extensive and award winning body of work has tackled hard issues in politics, popular culture, science, technology, health and the environment, in every medium, for popular audiences and in scholarly venues, and her fiction has been translated into French, German and Korean.

As you will hear Varda attest, the medical system is a power system, and in some jurisdictions, it is a monopoly of power by the medical system colluding with Big Pharma over the communities’ health. Your health.

In sharing her own health care experiences, Varda unpacks the layers of historical and current influences and dynamics that construct our health systems.  

She notes that was once medical error was just simple ignorance - but it is now willful ignorance - and it is repeated over and over again - and that is criminal.

SHOW NOTES

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Multiple Medical Errors in Varda's Family

0:06:00
Varda, from her teens to her mid-40s, had heavy care duties for her ill mother who had septicemia (sepsis) complications and developed MCS - Varda got married, moved away, but in her early 50s crashed with severe MCS (Multiple Chemical Sensitivity) - 4 years ago Varda's youngest brother, 13 years younger than Varda, had a massive breakdown - Varda thinks he has a triple or quadruple diagnosis - he has brain injuries - Varda also has 2 brain injuries and 3 quite bad spinal injuries
0:07:30
A lot of correlation between MCS and these types of injuries - her brother has 4 bad brain injuries, had suffered with depression and anxiety for many years, possible caused by MCS, but when he took antidepressant / psychotropics but did not work and his health declined - psychiatrists then gave him a cocktail of 7 psychotropics drugs
0:08:00
Since doctors don't believe in MCS - her brother was fully functioning professor of Culture and Information Studies at Western University and within 2 weeks he had a complete emotional and cognitive breakdown - last 4 years a nightmare as he has no diagnosis and no treatment
0:09:30
Commonality between MCS, FM (fibromyalgia) and ME (Myalgic Encephalomyelitis) is that psychiatrists only read symptoms through a psychiatric lens and will not treat any other way - he's gotten worse and worse - Varda does a lot of his care taking, and it has taken its toll - ongoing crisis, with flares when he's worse - psychiatrist has cycled him through many meds, making him worse
0:10:30
He took himself of all meds in last 12 months as they had made him intensely suicidal - but he's left with deep depression, anxiety and sleeplessness - Varda believes her brother is highly electromagnetic sensitive (ES) and quite multiple chemical sensitive (MCS) - he went to good clinic in US with integrative medicine and they did EEG, SPECT scans, and said his brain was damaged
0:11:30
The clinic asked about exposure to chemicals and pesticides - her brother had meningitis after his first brain injury - the clinic said he has an injured brain with chemical and electrical sensitivities - brought images and diagnosis back to Canada but no doctors to work with him because the medical system doesn't have MCS as a category and treat it as a mental illness

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"Family has been through medical hell"

0:12:45
Medical system also fails to recognize that people with MCS respond adversely to psychotropic drugs - her brother has been through medical hell - has taken a terrible toll on family in various ways - educate herself on other treatment modalities like stroke based rehab to red light therapy - found rehab support worker, but he's so far gone he may not respond
0:14:30
Both mother and brother impacted by medical error - Varda avoids the word 'victim' especially for herself so she can maintain a positive attitude for her advocacy work - but without doubt her mother and brother are victims of hideous medical error - its been hard on the family and her spirit - Varda likes to think well of people but these ongoing medical experiences make that challenging
0:15:30
Since Varda was 15 and her mother went through botched surgery that left her damaged for life - Varda is 70 now and that is a long time - had had positive encounters but with the outliers in the medical system, like the clinic in Dallas
0:17:15
Varda thinks more and more Canadians have poor medical experiences since we see more and more conditions that are not part of the established system - kids born with neurological concitions like ADHD, Autism Spectrum, behavioural disorders - that are linked at least in part to chemicals like lead poisoining - like the kids in Flint Michigan - they will haven cognitive issues for the rest of their lives - since we've entered the chemical age, many families having trouble, and no solutions or supports - Varda's family story is pretty tough, but not usual
0:19:00
In 1984 Varda did a national radio series on 'environmental illnesses' and 'iatrogenic disease caused by physician' - remarkable the lack of awareness of medical errors - the medical establishment completely redicule, refuse, psychologize and other tactics with conditions that don't yet understand and delegitimatize them - yet the medical record of errors is very disturbing - people need not to think of physicians as infallible beings from god, but as human with a set of skills and knowledge that is imperfect and limited
0:20:30
Varda thinks many people who could afford to go to naturopaths, etc and spend a lot of money - they choose through actions / spending to go beyond the 'drugs and surgery' paradigm of allo medicine - but in Canada very few people get together to change the way medicine is practised by pressuring the govt and College of Physicians and Surgeons - except with HIV and Autism, it is rare to get enought people in movement to shift govt - people are unable to have social supports and get no response to the medical system
 
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Psychologization and psychiatricization of the medical system 
 
0:23:30
Varda thinks most important things is that the psychologization and psychiatricization of the medical system in Ontario and Canada is a result of where the system is at, but it is not the cause - the cause is 3 things: the fundamental unwillingness to put in research dollars, the refusal to look at what works in other jurisdictions, and refusal to believe patients - if the govt funded ME and MCS equity it would be a different situation
0:24:45
Doctors should believe patients instead of the current mindset of defaulting to psychological - this mindset emerges from systemic discrimination and bias - there are a number of systemic factors that work seemlessly and synergistically together
0:26:30
In North America, MDs have developed a system of authority by putting all the other healing professions down as quackery and inefficient - after 100 years of this they believe their own shit
0:27:20
In Europe, naturopathic and herbal medicine were never discredited like they've been in North America - Indian Ayurvedic medicine is a respected body of healing knowledge - can say the same about Traditional Chinese Medicine - the contempt MDs treated other modalities is very pronounced in North America - so that's part of the problem
0:28:00
Another factor - in Canada, payment is organized to pay doctors and hospital only - because when medicare was established, people were facing catastrophic losses and catastrotophic illnesses - so only looking at those types of medical care, not the vast chronic illnesses - not only aging population - didn't look at medicine to help people through that
0:29:00
Instead, doctors had monopoly on heath care dollar - as a Guild to protect their monopoly - medicare doesn't pay for natural supplementation even though it is often cheaper, healthier, more effective - instead we take and pay for pharmaceuticals because pharma got monopoly of public health care money - doctors have fought very hard to protect
0:29:50
Created a system where the doctor is supreme with no competition and got paid whether they did a good job or not - in the US is doctors have to compete, that means space opens for other treatment modalities - but many people in US uninsured - but it is not right that doctors hang onto power and not serve patient need
 
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The Chemical Industry
 
0:44:00
But Allergy and Immunology Association tried to suppress that info - however, since 1999, a lots breakthroughs in diagnostic procedures and more evidence - in 2015 a group of French and Belgian researchers found in cancer studies the relation between environmental factors and cancer and began to see more and more people with ES and MCS
0:45:00
These researchers study nearly 1000 people from 2009 to 2015 - they found lots of biomarkers - researchers Dominic Valcome and Christine Champeniak and Philip Guerre published a paper "Reliable Disease Biomarkers Characterizing and Identifying Electro Sensitivity and Multiple Chemical Sensitivity as Two Etiopathogenic Aspects of a Unique Pathological Disorder"
0:47:00
They see ES and MCS as same disorder - symptoms people feel are the same - 2 sides of same coin - the chemical industry and phone industry have spent gazillions of dollars resisting - but the researchers found 6 things can be found with standard medical tests that characterize ES and MCS
0:49:00
100% of patients have decreased 24 hour urine 6-hydroxy-melatonin-sulphate / creatinine - that is a melatonin deficiency, the pineal gland not working properly - causes chronic insomnia and fatigue - therefore a universal biomarker - also too much histamine in the blood and inflammation markers - found biomarkers - 2 biomarkers indicating blood brain barrier breakdown
0:50:30
Found circulating auto antibodies against O-myelin - indicating a immune response - also very common hypoperfusion of the brain - not enough oxygen getting into brain - imaging also showed what region of brain - includes thalamus and limbic systems, that's where damage is - explains different and various symptoms
0:52:00
Varda is stunned that the Ontario Task Force did not take into account this evidence - so all these breakthrough and biomarkers are being willfully denied by Task Force - but research findings and symptoms match up
0:53:00
There is a real experiential resonance with diagnostic - and test are straight forward - but family doctors can't do or requistion the type of brain imaging needed - Varda's family doctor would have to send Varda to a neurologist who would probably refuse because they don't believe MCS is a real thing - this is why need a specialized facility where the doctors have the authority and accessing to the testing for diagnosis and for treatment
 
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Willful Denial
 
0:55:00
3 stages to MCS: first stage is Susceptibility - may involve genetic predisposition, and or may have heavy accumulated burden of chemicals - Varda has the genetic predisposition according to tests
0:56:15
Varda in 80s went to her doctor with symptoms, but no test existed for pesticides and chemicals - but should've removed chemicals from living environment to stop progress of condition, or even reverse
0:58:00
Stage 2 is Intolerance - worse symptoms - migraines, cognitive dissonance, hives, fatigue, muscular weakness - need to be living in house without new building materials - treat any infections, assess body burden, etc - but according to Dallas clinic docs it is not reversible at this stage - Varda said important to also treat infections - person is disabled
1:00:50
Stage 3 is Isolation - Varda was in stage 3 before Dallas clinic, they've helped enormously - strengthened her immune system, decreased her infections, gave needed nutrients - Varda got so much better - important thing about medical error is that it gets done over and over for MCS patients
1:01:45
Media coverage of poeple forced to be homeless because of MCS - can't stay in homeless shelters because of chemicals - Varda knows people who have lived on their balcony in the winter in Ottawa - people living in tents leaving families behind - the medical error was simple ignorance is now willful ignorance and repeated over again - Varda says it is criminal
1:03:30
Pharma corporations and electrical corporations would consider people affected by meds or electricity as collateral damage - Varda wrote a novel about the privitization of water (Water Inc.) - an environmental political thriller where those affected by electrical sensitivity will be allowed to die off so the 'fitter' survive - a form of eugenics
 
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50 Shades of Apocalypse
 
1:06:00
Today with Trump we see an element of psychosis in denying what is happening in the environment and what we're going to have to get rid of to survive as a species - Brave New World by Alduos Huxley written in 1932 was prescient - in his book, fetuses were bombarded with chemicals so they could work in chemical rich environements
1:09:00
Government makes risk assessment for chemicals decisions based on how many people will die - people making decision not ones being exposed - not an ethical way to evaluate chemicals
1:10:30
Varda says the dystopian streak in our culture projects 50 Shades of Apocalypse - our species has not learned to organize ourselves to actually respond to what is needed - EO Wilson, sociologist, biologist, studied ants - he said 'the human species is dysfunctional because it has primeval emotions, medeival institutions, and capitalist of technology capable of destroying the world'
1:12:00
We have not yet succeeded in our ability to govern ourselves writ large - healthy communities are greater with less social / economic stratification - we don't fail technologically, or culturally / vision, but do fail at governance - it is easier for people to envision a apocalyptic future, than envision a future a fair honest govt that organizes society in the interest of the many - most people can't figure out how to govern for the benefit of all
1:13:30
In the US a new caucus The Green New Deal is forming - like from the '30s - principles of redistribution, renew the economy, make the infrastructure green, provide jobs to all - we already have the tools to help people with these conditions - but we can't seem to control our institutions and our elites to make that happen
 
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Connect with Varda Burstyn:
 
Varda's websites:
 
 
 
Twitter: @TheChemEdge
 
 
Varda's fiction book:  Water Inc.
 
_________________________
 
Are you dealing with a medical error and need an experienced counsellor?
 
Book an online video counseling appointment with Scott at Remedies Counseling.
 
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Scott Simpson, Counsellor + Podcast Host + Patient Advocate
Paul Smith: How a somatization ‘diagnosis’ almost killed him

Paul Smith: How a somatization ‘diagnosis’ almost killed him

August 16, 2019

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. 

For years, every doctor Paul went to about his debilitating physical symptoms would see the somatization diagnosis on the front page of his medical record, and dismiss Paul’s symptoms as being in his head.

Then Paul developed a massive abscess next to his bowel and developed life threatening sepsis. The doctors couldn’t dismiss those facts. Paul received antibiotics for the sepsis and his other symptoms disappeared.

Yet when that treatment ended and Paul fell sick again, the somatization diagnosis preceded him to every doctor and once they saw that label, any of Paul’s physical symptoms were dismissed. 

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.

Paul had to fight for years to get the harmful somatization label taken out his medical file. That label prevented Paul from receiving appropriate medical testing and treatment for years and Paul contends that the somatization diagnosis is in effect, a human rights violation.

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SHOW NOTES

Fit, healthy and productive until...

0:06:45
Paul - very health child in Cheltenham (UK) - not into sport during school, but got into weight lifting as an adult - went to a very good school, good teachers
0:08:15
Studied art, European history, and sociology, A Level - later in his 30s did his degree in Fine Art, sculpture - but got an electronics job out of school - Foundation course important
0:10:45
After college started to have problems for the first time - different ways Paul could have developed chronic fatigue or ME (Myalgic Encephalomyelitis) leading to D-Lactic Acidosis because he re-built 3 houses and exposed to pesticides - when he got really ill in early 90s - sprayed his loft with pesticides and that's when he had problems from that point - started cleaing up the loft space - had been treated many time over the years
0:11:45
House built in 1840s so lots spraying - when Paul got a broom to sweep up dust and debris he immediately fell ill - also using NSAIDs (nonsteroidal anti-inflammatory drug) during this period - symptoms fatigue, muscle pain - abnormal fatigue after activity - NSAIDs affect mucosal lining of gut and healing of gut - inhibit different synthesis - taking NSAIDs during working, rebuilding house, and working out
0:13:55
Bit of workaholic - damaged both shoulders and collapse a disc - at this point encountered the pesticides - a number of things contributing to his illness - using NSAIDs to push through and mask the pain
0:15:15
Developed bowel perforation with sepsis with D-Lactic Acidosis symptoms: overgrowth of bacteria in the small intestine - sounds benign but isn't - Paul thinks there are many different types of bacterial overgrowth - like IBS - gut bacteria produce metabolites like D Lactic Acid - produces a neurotoxin D-Lactin would explain neurological symptoms in a lot of people
0:17:15
Paul had been diagnosed with chronic fatigue syndrome and ME, but he believes bacterial overgrowth may be affecting others with those diagnoses - Australian researchers found high level bacteria in ME patients
0:18:00
Fell really ill in 1999 - developed infection and D-Lactic symptoms at same time - hard to tell apart in early stages as D-Lactic feels like infection - flu like symptoms, abodominal pain, muscle weakness, breathing problems due lactic acid in blood - visual problems, confusion, speech problems, balance problems - symptoms can fluctuate - can disappear and don't know why
 
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Entering Hell
 
0:20:15
Symptoms so bad "thought I'd entered Hell" - expecting to die or commit suicide to escape suffering - only reason Paul didn't was because of his children - but had written letters so his children would know why he had committed suicide
0:21:30
Before got really sick in '99, medical system mostly useless - Paul did have raised CK (creatine kinase) levels - but given somatization diagnosis by psychiatrist even though had raised ALT levels
0:22:30
Raised CK shows muscle or heart problems - raised ALT shows problem with liver - Paul believes that a somatization is a human rights issue because an unreasonable diagnosis because its based on any one experiencing multiple changing symptoms with a period of 2 years - they are basically saying "if they can't find it, you're the problem"
0:23:45
D-Lactic Acidosis causes multiple changing symptoms - but when give a somatization diagnosis, doctors don't have to search for other causes and patient conveniently swept under the rug - they tell you your brain is manufacturing the pain and the symptoms - Paul was shocked, upset, scared with that diagnosis because he was so sick
0:25:00
NSAIDs caused a massive abscess next to his bowel - damage to mucosal lining and his lower bowel perforated but not found until 2003, more than 3 years since sepsis - then difficult to treat, still infected in 2006
0:27:30
Paul noticed his symptoms would abate when he took antibiotics - this was a clue D-Lactic Acidosis was causing symptoms - but could be treated with same antibiotic (metronidazole) that helped with sepsis - Paul kept telling them from 2003 that he had some other kind of infection even after sepsis eradicated
0:27:45
Paul's doctor noted for emergency doctors that Paul was 'drunk not drunk' because this were D-Lactic symptoms and not somatizing - but 'somatization' label was in his health record and took to 2017 to get it removed - had to fight hospital continuously to get it corrected even after they found the abscess
0:29:05
People with multiple changing symptoms will get somatization diagnosis - a highly prejudicial diagnosis - this is where it becomes a human rights abuse
0:30:45 Psychiatrist (MD Allen J. Francis) has written a lot about misdiagnosis - he wrote "Mislabeling medical illlness as a psychological disorder" - he has blog that outlines harm from somatization

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Brother's betrayal

0:31:30 Paul had a good doctor who said he wasn't somatizing but other doctors took the somatization label seriously - in the UK there is a document called Your Significant Medical History - the first document a doctor will see, highly influential and prejudicial - Paul steered clear of psychiatrists and was not sectioned
0:32:45 Paul was left in danger because of somatization label - he had a sepsis infection with periods of shock - but D-Lactic symptoms really serious with breathing issues, felt like Paul was suffocating at times - can have normal oxygen levels in your blood because D-Lactic affects mitochondria
0:34:15
Couldn't work - if Paul tried his energy levels would crash quickly - breathing problems, weakness, very ill - remembers trying to do things when he was ill, dizzy - Paul partially bought into the idea he must have psychological problems because that's what the doctors kept saying - so he kept pushing his body, making himself sicker - could end up in bed for weeks - had oxygen tank at home - but couldn't recover
0:37:30
Paul's brother is a doctor - he told everyone in their family that it was all in Paul's head and they all turned their backs on Paul - he was shocked how people treated him when he fell ill, even when he went asking for their help - people would just ignore him
0:38:45
But Paul did have a good doctor who believed Paul was physically sick and got him to see neurologists but they just said it was somatization - 2 of them noted that he had D-Lactic illness but did not comprehend - D-Lactic Acidosis is a hidden problem - normally associated with Short Bowel Syndrome
0:39:45
Dr Luke White gastroenterologist believes D-Lactic Acidosis is much more common then being diagnosed - Dr White believes that any one with bacterial over growth can develop D-Lactic Acidosis - Paul says a lot of people with ME/CFS have bacterial over growth - and still much research to be done
0:40:45
Paul eventually got a diagnosis from Dr Malcolm Hooper and Dr Sarah Myhill - but NHS (National Health Services) cut off Paul's benefits before Dr Myhill could order the tests - Paul considers both doctors to be his heroes - and wouldn't have made it without Dr Hooper - Paul positive response to antibiotics was the clue to D-Lactic - when his GP retired he left Paul a big supply of antibiotics to treat himself - and Paul realized he was on his own and started to investigate

last_will_and_testament.jpg

Expecting to die

0:42:45
By 2016 Paul was expecting to die as he was developing reistance to the antibiotics - very worried so looked further - found D-Lactic Acidosis by chance after a conversation with Professor Hooper about fermented gut - when natural gut bacteria build up in small intestine they cause production of D-Lactic and imbalance occurs
0:43:30
Antibiotics failing, Paul had written his will - but in his research he found a list of symptoms for D-Lactic Acidosis and knew immediately that is what he had and made an appointment with a D-Lactic specialist - Paul took his records and symptom list and his positive response to anitbiotics
0:45:00
Specialist quickly diagnosed Paul and said it may have been the cause of his symptoms for the last 20 years - Paul was given a diet that restricted consumption of carbs and sugars thereby decreasing production of D-Lactic neurotoxin - so can control symptoms without antibiotics
0:47:15
A number of auto immune illness patients also do well on low carb / sugar diets - Paul says D-Lactic can damage the gut causing auto immune problems - Paul says D-Lactic is an infection, but doesn't raise your temperature because they don't get into the blood stream like a normal infection - but the metabolites do exit the gut and cause symptoms - but small quantities will damage mucosal lining and cause an immune response - bacterial overgrowth may be causing a lot of problems
0:48:00
Antibiotics can select for certain types of bacterial over growth - they can also cause over growth through resistance - treating live stock in our food system with antibiotics can also 'train' bacteria to be resistant - high carbs + antibiotics + NSAIDs maybe contribute to bacterial over growth
0:49:30
Paul was able to use antibiotics until he became resistant - antibiotics are primitive way of dealing bacterial over growth - he's hoping to get a fecal transplant to completely reverse the condition - he's had some temporary success with probiotics, but it is complex and he needs help, but is not getting it from health system
0:51:00
Just E Coli has both helpful and unhelpful forms, so too do gut bacteria - but nobody explored and mapped gut biome - Paul has to do own research just to keep himself alive
 
diagnosis.jpg
 
Lucky to be alive
 
0:52:00
Paul believes D-Lactic Acidosis may have already caused some deaths since it is a multi systemic neruological illness - Paul is fighint the NHS and the Hospital - he's asked them to investigate but they don't want to - the local NHS is fighting Paul tooth and nail - and his brother / physician believes his doctor colleagues somatization label in spite of acknowledging they only get 10 minutes with a patient - the somatization label negatively impacts subsequent health care
0:53:45
In spite of abnormal blood results, 2 psychiatrists labeled somatization diagnosis - making life difficult and no doctor would take Paul seriously, even in emergency room - other doctors requested blood gas testing but it was ignored for years because of somatization label on front of his medical records
0:55:30
Paul was very 'lucky' to get a proper D-Lactic Acidosis diagnosis, very lucky to have met Professor Hooper - Paul believes others will also have been misdiagnosed - people with IBS and other bacterial growth as some Australian researchers have found
0:56:55
Getting D-Lactic Testing is 2 stages: first is testing for bacterial over growth from a gastroenterologist - symptoms would include bloating, burping, production of a lot gases, abdominal pain, and problems from food with carbs - Paul needs to keep his carb consumption low
0:58:45
2nd step far more difficult - Paul is one of few who has been diagnosed - so will have to be pushy with gastroenterologist for further testing for D-Lactate - possible through Dr Sarah Myhill - definitely worth the expense - and ask for D-Lactic gastrenterologist specialist
1:00:30
Fecal matter transplant is using 'poo' from a healthy super donor to put back into the ill person's body the healthy bacteria - Paul hopes to pursue it and has done some research and there are cases of reversal via FMT - Paul is getting further testing - and is pioneering his own diagnoses and treatment
1:02:30
Paul has had to transform himself from a sculptor to a medical researcher - Paul says a lot of other people also unwell so he's trying to get as much info out to others
1:03:25
Paul thinks there other forms of bacterial over growth beyond D-Lactic and its metabolites - that research needs to be done so others can get diagnosis and treatment
 
death_by_medicine.jpg
 
Research
 
Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome.
 
Microbiota Transplantation for Fibromyalgia: A Case Report and Review of the Literature
 
Medical Illness As Mental Disorder
Conrad: Neurotoxicity - brain injury caused by antidepressant

Conrad: Neurotoxicity - brain injury caused by antidepressant

August 9, 2019

Antidepressants are dispensed by doctors like a cure-all candy. In the United States, about 11% of the population is taking an antidepressant. It is a booming business for big pharma.

What the medical system rarely talks about is how some people become brain injured - sometimes permanently - from the toxic effects of the medication - this is called neurotoxicity, or Toxic Encephalopathy.

In this episode of Medical Error Interviews, I chat with “Conrad” about how he went from a physically fit father with a very successful career, to a victim that has been disabled by medical error, ignorance and ego.

Conrad’s doctor dismissed his reports of side effects from the medication, erroneously attributing them to anxiety, and instead doubled Conrad’s dose. This would prove to be catastrophic to Conrad’s long term health.

“Conrad” is not his real name, he is using a pseudonym to protect himself from further harm by the medical industry. But his experience should be a warning for any one who has been prescribed an antidepressant.

global_antidepressant_use.png

SHOW NOTES: Conrad: Neurotoxicity - brain injury caused by antidepressant

Conrad - physically fit father with successful career

5:00
"Conrad" (a pseudonym to protect his identity from further medical harm) grew up in Chicago - fantastic childhood - a lot of friends, not the best student, but into sports, typical boy in 70s and 80s
6:00
Graduated high school 1985 - went to college, more playing less studying - very social guy, built friendships and relationships - decided didn't need to finish college and would go into sales
7:00
Started simple phone sales, but quickly into technology and telecommunications during the tech boom - worked for MCI - went into software industry in the 90s for several years - evolved into IT consulting up to 2015 - focusing on outsourcing, working for 3rd largest consulting company in the world until became disabled in 2015.
8:15
In 2006, traveling more due to job advancement - never a fan of turbulence, make him uneasy - at that time only psychiatrists could prescribe a SSRI medication antidepressant - Conrad took the medication, not sure the medication helped, but getting used to frequency of flying helped - continued to progress in sales career until 2015 as mid-level sales executive specializing in outsourcing
10:40
In 2015 started struggling with his health - in and out of emergency rooms - at one point ER docs thought he had a stroke - ran a bunch of tests and got a diagnosis of hyponatremia - also known as SIADH - occurs mid-life with brain injuries - as an adverse effect of an SSRI or antidepressant - it is salt balancing in the brain and can cause a lot of neurological problems
11:30
His doctor told Conrad to stop antidepressant as they concluded it was causing his symptoms - stopped in SSRI mid 2015, but symptoms did not go away, they were chronic - hyponatremia is well known side effect of SSRI
12:40
Conrad experienced headaches, balance issues, confusion, a general unwell feeling - not enough to disable, but indication of what the medication was doing to Conrad - started the med in 2006 - but the side effects had been building the last few years
13:45
Stopped the med and struggled for a few months with the hyponatremia symptoms - Conrad had been offered the perfect job for his skills, and was the cieling in his career, with good salary and bonus structure - went to his PCP (Primary Care Physician) to get better and fix what was going on with medical issues - PCP suggested going back on the SSRI
 
US_5_population_60_psych_drugs.jpeg
 
 
Hyponatremia Symptoms
 
15:00
This is the point where story gets a lot worse - Conrad not sure why he's prescribed antidepressant for anxiety (flying, speaking in front of large audience) - but he trusts the doctor - also gave him benzos and Xanax for those extra bumpy flights which he never took
16:20
Re-started SSRI meds, but this time the previous hyponatremia symptoms much worse - severe headaches, agitation type anxiety, severe exhaustion, insomnia - like being plugged into electrical outlet - called PCP's nurse to say something is not right with this med - she asked doctor and called Conrad back and cussed him out, saying these were normal side effects, you're dealing with anxiety and, as per the doctor, you need to double your dose.
17:45
So PCP ignored adverse effects and instead doubled the dose - within 24 hours, the headache was "unbelievable", like a "vise grip around my skull" - Conrad has worked out every day for 35 years - so thought he could sweat out the toxicity by going to the gym
19:15
Backing out of garage took off antenna and garage door, so working out wasn't a good idea - because confused, cognitive impairment - went back to doctor - experiencing adverse chemical effect causing anxiety - the doctor says Conrad cast too complex, but doesn't admit the SSRI is causing problems - suggested a psychiatrist
20:30
Conrad went to the psychiatrist and within 5 minutes she diagnosed him with panic disorder - she ignored all the physical symptoms and only concentrated on the one emotional symptom of anxiety - made a ridiculous statement like 'you're revisiting your mother's death in the 1990s' - so now being misdiagnosed with a mental health illness he didn't have
21:45
Conrad had to turn down the job offer because he still couldn't work so had to go on disability for 'anxiety disorder' - continued to see doctors to find out what was physically wrong - was diagnosed with chronic fatigue syndrome, with fibromyalgia - but these were symptoms of something more complex
22:45
All the doctors in the medical group wanted nothing to do with questioning SSRI medication, they would end the appointment, did not want to talk about it - so they tested for MS (Multiple Sclerosis), and they found brain lesions but classified as 'unspecified medical condition' on MRI report, and not consistent with MS - when Conrad said that SSRI can cause brain lesions, but the doctors are rejecting it and say can't help you
 
Congrats_Pharma_Grad.jpeg
 
 
Toxic Encephalopathy
 
24:00
Kicked off disability - now no way to support family, children - kept researching online and found condition called 'neurotoxicity' also called 'toxic encephalopathy' - can be caused by meds - Conrad starts looking for specialist - but also wanted more imaging before seeing specialist - suggested a brain Spect scan that showed low blood flow and toxic neuro inflammatory process in every lobe of his brain
25:30
Got QEEG results indicated brain injury - so Conrad had 3 images showing dysfunction - indicating neuro toxicity - at this point couldn't operate car, read books, follow tv, pay the bills, fatigue, weakness - Conrad had stopped the SSRI shortly after seeing the psychiatrist, but on the advice of another doctor - so was on the SSRI for 2 months
27:00
Flew for appointment with famous forensic neuropsychologist / neurotoxicologist Dr Raymond Singer, studies the effect of chemicals on the nervous system - his research had found SSRI can cause side effects - he used more objective evidence and full medical background review, tested Conrad for malingering and was able to prove that Conrad had a toxic exposure
28:30
Found that Conrad had extreme deficits in information processing, short term memory impacted and executive functioning impacted - but Conrad's speech and long term memory not affected - but can't watch movie, or drive car - consistent with neurotoxicity - 16 hours of evaluation by Dr Singer and Conrad was diagnosed with toxic encephalopathy and medication induced major neurocognitive disorder
31:00
Fatigue and pain symptoms affect entire nervous system - validation by Dr Singer's report was huge, concluded Conrad was disabled from employment - his insurance reinstated his disability payments, a huge stress relief
33:00
Today Conrad's symptoms are worse because the condition has progressed - has to go for re-testing with Dr Singer to measure Conrad's changes - also sees MD who treats holistically with symptoms
34:30
Nothing helps alleviate his symptoms of headache and cognitive impairment, fatigue and pain - impacts every area of his life: physically, emotionally, financially, relationships - disability only pays a fraction of what he used to earn - can't hop in the car to visit his children, can't work out, can't walk the dog, can't read books, can't watch tv - has been trying to spread awareness
 
FDA_approval_doesn_t_mean_safe.jpeg
 
Data Shows the Danger
 
36:00
Frustrated with the medical community - there are 1000s of people who have been affected by medications, but rejected and denied by their doctors - they are heavily influenced by the pharmaceuticcal industry - as a result they are not supporting their patients - they don't know what drugs do
37:30
From Conrad's research, psychiatric medications are the most dangerous - they cause dementia, neurotoxicity - just about all of the do - suicide is a black box warning on some - antibiotics and statins can be dangerous - certain classes more dangerous than others - if people looked at independent research journals, not funded by the pharmaceutical industry, they would find that data showing the danger
39:45
Conrad says when he got sick 6 years ago, there was no information on the internet regarding damaging effects, now there is an article every day - overwhelming info just on the SSRI class of meds - opening people's eyes how the pharmaceutical and medical industries operate, and work too closely - because of social media, things can change, people are becoming more aware
41:30
Re class action lawsuits, but it is very difficult for a small law firm to go up against a large pharma - but hard to build momentum, but gaining ground - but there are whistleblower doctors writing books showing brain imaging and linking them to mitochondria damage, chronic fatigue syndrome, fibromyalgia, neurotoxicity - doctors from each drug class are coming forward
43:00
But for lawyers it very hard to win - expensive, $100k just for discovery in a lawsuit - there is also statute of limitations for suing a doctor, and that limit is 2 years - Conrad was diagnosed more than 2 years after he was injured - this is the dance doctors do - doctors don't want to say a drug caused an injury, they don't want to get into conflict with their colleague - there is some code going on there, that leaves people very vulnerable
45:00
The trauma of his symptoms was deepened by the way the medical system responded - when a doctor denies symptoms or side effects it causes stress - and when they do harm, they don't stand behind it - there are 1000s that have been harmed and doctors have turned their back on them
 
Pill_help_or_hurt.jpeg
 
 
Conrad Hopes for Recovery
 
46:20
Conrad lives day to day, trying to get better - working with a physician familiar toxic encephalopathy and praying - she says Conrad is permanently disabled, but he's hoping there is something - people talk about hyperbaric, maybe stem cells someday - he's optimistic - but there is not a pill that will fix what he has, it was a pill that got him here
47:10
Conrad was perfectly healthy before he went to the pyschiatrist - was not in habit of going to the doctor - even when his nose was broken - and when he finally started to go to a doctor, they gave him a pill that made him chronically ill - sometimes its best to stay out of the doctor's office
48:30
Conrad says even the warning inserts with medications only list the mild side effects, they don't mention neurotoxicity, toxic encephalopathy or brain damage unless the FDA tells them to
50:00
Dealing with grief is hard - personal relationships affected - can't go out and have a beer with friends, can't go to football game - misses his sons the most, they were his best friends, they did so much together - they won't understand until they're adults - but hopes one day they read the 73 page report that shows exactly what happened to him
51:10
Raising awareness is one way Conrad deals with grief - talking to his sons, and seeing them doing well in school and activities is what he looks forward to - prays one day the will understand how this missed out on their highly functioning father
52:30
Conrad says if you suspect you have this injury, they should contact Dr Raymond Singer if the prescribing doctor is pushing back - Dr Singer is like Erin Brockovich, he's involved in testifying in court cases representing people injured by chemicals - he can making diagnosis, and that will get respect from other doctors and they won't say its a mental illness - doctors are our equal - used to think doctors are above us
54:00
Doctors know their field, but they do not know medications - and if they're telling you something you don't agree with, push back, do your own research, and stand up for yourself
 
 
Conrad_-_filtered_pic.jpeg

Connecting

 

Conrad on Twitter:
 
@SSRI_Injured - Pharma Harmed/ Drug Safety Advocate
 
 
Facebook awareness groups:
 
 
 
Neurotoxicity from NIH.gov:
 
 
 
_______________________________________________

Medical Errors Interview podcast host Scott Simpson and counsellor at RemediesCounseling.com

A safe space for victims and survivors of medical error.

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Felicia Mahmoud - White Coat Terror Victim

Felicia Mahmoud - White Coat Terror Victim

August 2, 2019

In this episode, I interview Felicia Mahmoud, from Indiana in the US. Felicia’s story begins with a minor injury from her athletic lifestyle.

Now imagine you’re Felicia - and you’re having very minor surgery on one of your ankles to remove a suspected cyst, a small pimple size cyst.

Unusually, there is a medical device sales rep observing your non-medical device surgery.

Imagine you wake to find the doctor has cut away a huge chunk of your calf muscle. On both legs.

Imagine you find out the doctor has implanted mesh devices in both your legs. Devices that were not designed to be inside the human body.

How would you feel? Betrayed? Angry? Frightened? Maybe all that and more.

I recently chatted with Felicia about her experience and how she’s dealing with the aftermath.

Watch the video version by being a Premium Patron: https://www.patreon.com/MedicalErrorInterviews

A caution that some may find Felicia’s health care experiences distressing.

Felicia's twitter images:

  Felicia_pic.jpg  Felicia_twitter_image.jpg

 

SHOW NOTES

Felicia: Personal Trainer with Athletic Injury 

4:30

Felicia was very active - got her degree in Exercise Science, then Personal Training Certification with American College of Sports Medicine - working at a gym - 2 year old daughter - ended up getting an injury common to athletes called Compartment Syndrome (CS) - a condition common in endurance athletes, a vascular condition - like an over-blowen tire, usually bilaterally in both legs

6:30
Pressure in muscle compartment, causes swelling, can cause nerve damage if not treated - 2 versions of CS in athletes: acute and chronic - acute can be life and limb threatening, but athletes usually get the chronic version - usually reversible with simple procedure - Felicia symptoms were tightness, pain, pinched nerve - hard to stand for even 10 minutes, otherwise a lot of leg pain - believe damage was too tight roller blades
 
8:00
Can take 1 - 2 years to get diagnosis - pressure testing for diagnosis of CS - Felicia had very high pressure indicating CS
 
9:00
Treatment is like peeling an orange and the thin white skin is like the fascia covering the muscle - procedure is to make a small slit in the fascia to relieve the pressure - reversible condition, 90% success rate - Initially (before CS diagnosis), Felicia had small pimple size point of pain on her leg - thought it may be a small cyst - found a doctor that agreed
 
10:45
Doctor / podiatrist has Felicia in for surgery for cyst removal - but had not been diagnosed with CS yet, assuming this 'cyst' is causing all her leg pain, just above her ankle - Felicia found out later that he didn't even think she had a cyst - also found out later that a 'mesh wound care vendor' was at her surgery and wondered why a sales rep would attend her surgery?
 
12:15
Day of surgery, Felicia asked to sign 2 forms: one for cyst surgery, and one for sales rep to attend surgery - Felicia read the form and it didn't say any thing about changing or implanting any thing, just that he would be in the room - Felicia reinforced that she was just there for the small cyst removal - nurses put Xs under procedure line so that nothing could be added later - witnessed by hospital nurse
 
13:50
Felicia confirmed that they were not doing any thing beyond cyst removal and the doctor nodded his head, but glared at her - Felicia's husband noticed and said to her 'you're making him mad' - Felicia thought she could walk out, but already in gown, and lots of people, what could go wrong?
 
Felicia_leg_2_days_before_surgery.jpg
Felicia's leg 2 days before surgery
 
 
Minor Surgery. Major Assault
 
14:30
In the small print of the form it says that nothing could be done without her consent unless life threatening emergency - Felicia walks up from surgery and half of her calve is missing, a health muscle, on both legs - doctor said it was his opinion the muscles were too big, so he cut them down
 
15:30
There were 2 surgeries - and the mesh product has been implanted in both legs - gets more creepier and bizarre - there is a hole in her leg - but has 2 incisions in her leg so that he can charge her insurance more for additional surgery - he doesn't get paid extra if he uses same incision - Felicia assumes he cut her other leg so he could charge for that as well
 
18:30
The surgery he performed doesn't really exist - at home Felicia could see all the incisions, called to the hospital immediately, and in a lot of pain - the hospital put the doctor on the phone and he was nasty to her - told her to schedule an appointment to discuss what he did and if she'll recover - 2 days later she met with the doctor and he had his nurse in the room to intimidate
 
20:30
Felicia asked her husband to turn on his audio recorder - doctor lied to saying Felicia has accessory muscle - justified surgery since Felicia is young and fit and would heal quickly - but weeks later having a problem with one leg where mesh was implanted - he started acting bizarre and wanted to remove it in his office
 
22:00
He seemed very impulsive, intimidating at times - Felicia called hospitals to say she wasn't comfortable with this doctor, but because post-operative care is free, no other doctor wanted to take over her case and not get paid - so she had to keep going back to this doctor - Felicia couldn't find the procedure he performed on her - he just made it up - even the product he put in her leg, is only supposed to be used topically, not intended to be used - or sold - for under the skin
 
24:30
Felicia continues to have problems - the doctor could be charming, maintain composure, but a convincing liar - sounds like he's very caring, but its false - she believes he's an expert con artist - probably done it to other patients
 
26:00
Felicia asked for physical therapist, but he says no - but he writes in his report that she declined conservative treatment - but Felicia was recording the convo - there was no antibiotics, or steroids to treat a reaction to the mesh - no imaging or blood test to diagnose reaction to the mesh - Felicia still believing he knows what he's doing at this point and he schedules her for another surgery
 
Felicia_leg_after_surgery.jpg
Felicia's leg after surgery
 
 
Experimental Guinea Pig
 
27:00
Surgery to remove mesh from one leg and will improve scar tissue - she comes out of surgery with a carving in her leg the shape of the implant - a perfect square - she thinks he carved square into her leg as way to punish her - Felician finds out the mesh is a bovine product that can't even be removed
 
28:20
Felicia asks for pathology report, but there wasn't one - he didn't send any thing to pathology - no record of any thing removed - she questions his behaviour - perhaps he's a sociopath
 
30:00
Felicia had been complaining to the hospital about the doctor - she didn't know the hospital was telling him she was complaining - hospital kept defending the doctor
 
31:00
Felicia asked for copy of consent form - but the copy in her chart is blank, only the doctor's signature, not her signature - Felicia recalled that the nurse had a funny look on her face just before surgery - Felicia suspects the doctor switched the consent forms to include an option to remove muscle - nurse held the form up for Felicia to see but not hold, placed it down and left the room - the doctor comes in and proceeds with surgery
 
33:15
When Felicia awakens she finds she has carvings in her leg - Felicia since asked herself: Why didn't the nurse hand her the form?
 
35:00
Felicia has an attorney - Felicia is convinced the doctor did it intentionally so hard for lawyers to understand his motive to intentionally harm - but turns out the doctor has other lawsuit against him for doing procedures outside the scope of his practice
 
36:00
The doctor contends he removed extra muscle and Felician questioned if it was due to Compartment Syndrome, as that would explain the swelling - the doctor admits that he considered CS - Felicia asks herself, but not the doctor, why he didn't do the standard CS procedure
 
37:00
The attorney was also baffled why a doctor would do something like that - he ripped out healthy muscle of a young and athletic woman - operated on both legs with multiple incisions - Felician feels violated and has launched a lawsuit
 
39:30
Doctor has been in practice over 30 years - but no reviews online when Felicia researched him before surgery - no indication or warning flags - she thinks he should be in jail
 
 
compartment_syndrom.jpg
Compartment Syndrome (CS)
 
 
Intentional Harm. No Error Here.
 
40:50
Terrifying waking up every day - emotional toll - frequent nightmares - every day is a reminder of disabling surgery for nothing - did finally get proper CS surgery, but still dealing with aftermath from harmful surgery
 
41:50
Felicia not sure if mesh is actually taken out - but the doctor had to have intentionally done something to make the square shape in her leg
 
43:00
Because mesh was made topically, not under the skin, so long term effects of mesh not known - doctor was trying to make a sale
 
44:10
Subsequent surgery has repaired some of the damage - but if had proper CS surgery she wouldn't be missing muscle and have tendon surgery - but has permanent disfigurement to her legs, pain every day, can walk, but cannot stand in one place for long - cannot do personal training business - instability in ankle muscles is ongoing concern - can only do sit down jobs now
 
46:30
Felicia says that if a shark bite part of her leg off she could accept it, but to be a medical experiment causes anger - "who does he think he is?"
 
48:00
Felicia feels angry - was also hard for her husband to initially understand the doctor would do such intentional harm
 
49:30
Dehumanizing to take part of a person without their consent - hospital tries to shut down her complaint, dismiss it - the doctor still working there - maybe his reputation takes a hit, but they manipulate the online reviews
 
51:00
Felicia advocates on social media - but hard to be advocate and traumatized person at the same time - but thinks it takes a lot of people getting the message out in different ways - still a long way to go, but getting some momentum
 
53:00
Surprised nobody talking about this issue online - not much about fraud and abusing patients, vs framing as an error or mistake - Felicia wants to bring about accountability
 
54:45
Compares driving a vehicle responsibility same as surgery responsibility, but the system does not treat them the same - should be criminal negligence in her case - not just a small fine for the harm they've done. 
 
evil-doctor.jpg
Medical abuse = criminal negligence?
 
 
I checked in with Felicia a few days ago.
 
Felicia writes:
 
The injury is actually worse now as when they tried to remove it (scar tissue) nerve damage occurred.
 
But my original injury the compartment syndrome is reversed but I’m left with the damage he caused.
 
I actually close my eyes every time I open my twitter page so I don’t have to see what happened to my legs because they look totally mutilated.
 
You can connect with Felicia on twitter: @WhiteCoatTerror  End White Coat Worship 
 
________________________
 
To watch video versions of the podcast interviews, you can support the podcast be becoming a Premium Patron at https://www.patreon.com/MedicalErrorInterviews
 
For counseling support, you can book an online video counseling session with podcast host and counsellor Scott Simpson at RemediesCounseling.com
 
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Lisa Alioto: Misdiagnosis, Myths & Medical Errors

Lisa Alioto: Misdiagnosis, Myths & Medical Errors

July 26, 2019

Lisa Alioto is a U.S. lawyer who trained hard and climbed to the summit of Mt Kilimanjaro.

Unwittingly to Lisa, conquering that incredible physical challenge would mentally prepare her for even bigger physical - and medical error - challenges.

Years later and well into her law career, Lisa started to experience extreme exhaustion and sleeping symptoms that progressed to black outs, memory loss and vision loss. 

In an effort to find what was causing her debilitating symptoms, Lisa encountered a slew of uneducated physicians and misinformed physicians and careless physicians. Lisa was exposed to multiple medical errors - including a twisted version of cognitive behavior therapy , and so-called exercise therapy and both of which exacerbated her illness causing her to be more ill and disabled - Eventually Lisa received a proper diagnosis of a neuro-immune illness.

Not one to sit back and let injustice continue, Lisa has taken her experiences with medical error, and advocates for other patients so they don’t have to go through the same medical harm and delayed diagnosis she did.

Lisa tells the struggle she encountered with a medical system that has embedded a medical error into its education of doctors and treatment of patients. 

SHOW NOTES:

 Lisa_Mt_Kilimanjaro.jpg

 

Climbing Mt Kilimanjaro (Lisa is 3rd from right)

0:05:00
Lisa was born in Milwaukee - one older brother - moved around a lot in mid-West - parents married 50+ years - college in Minnesota then twin cities (Minneapolis–Saint Paul) for law degree - undergrad in psychology, criminology minor - thought she would be a police officer
0:06:15
Gradual onset of illness - started 2014 at age 43 - noticed getting more tired and exhuasted, harder to get to work - by 2015 was impacting work, took much more effort because so exhausted - sleep quality poor and declining - sought medical help
0:07:15
A lot of different kind of doctor visits - really frustrating - also expensive - now knows she has compromised immune system so getting sick a lot from doctor waiting rooms - but no body knew what to do - throwing out guesses as to what causing her illness, but some of the guesses were quite harmful - different meds - one medication was so strong - was given 8X dose of large man, subsequent doctors have tested Lisa for organ damage - also told to spend 12 hours a day outside and will be fine
0:08:30
An impossibility living in Minneapolis, not enough sunshine - also sent for cognitive behavior therapy - a top hospital told Lisa to exercise more, but she was very active before getting sick, an excercise buff - initially thought it was great idea, but it turned out it was the worst advice she received
0:09:30
Lisa was a mountain climber - 2005 / 06 decided to get into shape - started intense workouts - wanted to push further and wanted to climb Mt Kilimanjaro and summit it - one of her biggest accomplishments in many ways
0:10:45
Climbing was a real challenge - altitude and effort hard on the body - a migraine the day before the summit - an experience of a lifetime - now draws on that accomplishment to help deal with chronic illness and other life challenges
 
oatmeal_bowl.jpg
 
To Chew or Not to Chew
 
0:12:45
When initially ill, Lisa thought she had a sleeping disorder because it was so poor and she was exhausted - went to a sleep clinic - but in 2016 more symptoms - memory loss, vision loss, swollen lymph nodes - health went down hill
0:14:00
No doctors in Minnesota for ME patients - so not getting any care - waiting for her appointment at the Stanford clinic - but Lisa's GP said that Lisa's symptoms were beyond her skills - so went to a lot of different specialists: rheumatology, infectious diseases, internal medicine, neurologist - but not finding any thing to explain symptoms - finally went to clinic that diagnosed her with Myalgic Encephalomyelitis (ME) - aka 'chronic fatigue syndrome'
0:15:30
Felt relief getting a diagnosis - but relief short lived until she did her own research on ME - learned about it and went to 3 day course to manage disease - but more research exposed that exercise and cognitive behavior therapy (CBT) were doing more harm than good
0:17:00
CBT reinforced that she should be progressing with exercise - but in the end, the only thing they helped with was with memory loss - working out caused relapses, so a short lived experience with that program
0:18:00
Difference between CBT Lisa experienced, and CBT people living with chronic illness receive - Lisa loved working out, but it would cause a relapse and bed bound for days - got to the point where Lisa would consider how much chewing was involved with certain foods because her energy was so limited - choosing oatmeal over sandwich
0:18:45
Hard for people who have never been seriously ill to understand having to choose food based on how much energy to chew the food - too much energy from chewing - lost a lot of weight because too tired to make food, chew food
0:21:00
Lisa did more research about ME - about misinformation, myths - but did get helpful information about not pushing herself physically - also experienced black outs, unresponsive for hours - like coming out of deep dark hole and hit by truck, feeling terrible - but has decreased somewhat since she stopped pushing herself
 
balck_out_trimmed.png
 
Black Outs
 
0:22:15
Very scary having black outs - would hide her symptoms in public - but scared that someting bad could happen when she was blacked out
0:24:00
One turnaround in health was stopping exercise - but still had post exertional malaise (PEM) symptoms from doing too much when feeling 'good' - but next day would be crashed - learnig to pace her energy has been hard because she's a very motivated person - graduated top honors in law school, always tries to do her best at what she tries
0:25:30
Now when someone asks her to do something, Lisa has to look at how much energy she'll expend the day before the event, the day of the event, and if she has time to recover the day after the event - will it cause more harm than good?
0:26:30
"paying the price' of too much exertion means laying on the couch the next day - if lucky, she can open her eyes to watch tv - sleeping for 10 hours and laying on the couch all day to recover - eating is optional / minimal due to energy required - had to accept that self care is productive
0:28:30
Works from home every other day because of energy of taking shower and getting ready uses all her energy - putting on healthy face when sick takes a lot of energy too
0:29:30
'chronic fatigue syndrome' is a misnomer, so employers had to learn about - had to educate her employer - also involved in ME advocacy - some work with the Centre of Disease Control (CDC), health care providers - also volunteer for state ME org, doing social media - also formed Minnesota ME Alliance to support people in Minnesota - so many people are completely house or bed bound - want to find and help them and educate medical providers so people can get diagnosis and not waste time and money - also write a lot of articles about living with ME
0:32:45
Writing therapeutic - realized grieving for loss of acitve lifestyle, etc - used to do a lot for her parents, but now role reversal and parents are her care takers - example of grocery shopping because it takes energy to lift things, walk around store pushing cart, and unpacking at home
 
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Chronic Illness Made Lisa a Better Person
 
0:34:45
Grief and loss of losing life she had known - loss a lot of friends, shocking - but 2/3 gone once she couldn't be active, she lost friends - now feel have replaced a lot of those things - doing chair yoga with seniors, meditation - some positive things - may sound weird, but getting a chronic illness has made her a better person - because before was very motivated to mover herself forward, but now goals impact a lot of other people beyond herself
0:37:30
Engages a lot with chronic illness communities - so much campassion in these communities - brought out the best in her - more understanding
0:38:50
Biggest goal is pacing her energy to get better health - but hard time giving up advocacy and still trying to find balance with personal health - but had recent house fire threw a wrench into pacing - to help others, she needs to be healthy
0:40:40
Currently trying to get appointment at Stanford (Complex Care Clinic) so she can see a ME doctor - recently tried low dose naltrexone (LDN) and given her a small boost in energy - curcumin supplement may be helping but dealing with house fire aftermath so hard to tell - continue learning about potential new symptom treatment
0:42:30
Uses a sleep monitor and it shows she's not getting deep sleep - told she has 'spontaneous arousal' during sleep where she wakes briefly - but don't know cause - took meds to help with sleep, but caused more problems
0:44:20
Lisa will need to 'rest hard' after our interview - END
 
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Connect with Lisa Atiolo
 
Twitter @lisaalioto
 
 
Blog - RealisticOptimism.org - focused on how you can live a life filled with happiness, gratitude and joy despite the challenges of a chronic illness.
 
Twitter @aliotolisa (Realistic Optimism)
 
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____________________________________________
 
Host Scott Simpson
 
 
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Brian Hughes: Psychology in Crisis - an interview with the psychologist and author

Brian Hughes: Psychology in Crisis - an interview with the psychologist and author

July 18, 2019
Author and psychologist Brian Hughes talks about how bad science and scientists can lead to harming people. Brian connects the dots between bad psychological science and how that can lead to medical error and patient harm.

We talk about an infamous research trial out of the UK and how its very poor methodology - coupled with what has been characterized as fraudulent behaviour by the researchers - has lead to millions of patients around the globe with the biological disease  Myalgic Encephalomyelitis - or ME for short - to be subjected to medical harm, abuse and trauma.

These ME patients are often prescribed ‘treatment’ that is actually contraindicated and  makes them more ill, sometimes permanently disabling them. 

As one ME researcher noted - I’m paraphrasing her - “They came to the doctor with ME. They left with PTSD.”

This bad science by psychology researchers who have built their reputations, their careers and their bank accounts on their fraudulent research and harmful treatment, have embedded medical error on a global scale by negatively influencing health care systems everywhere and misinforming physicians about the biological nature of ME.

Brian’s book shows how bad psychological science leads to an institutionalized and embedded medical error that permeates our health care systems world wide.

Brians' website
Brian's blog
Brian's book on Amazon
Brian on twitter
 
Brian Hughes Show Notes
 
Psychology is science
 
0:06:45
Brian born and raised in rural Ireland, small town of less then 2,000 - in '70s Irish economy weak so education considered very important - Brian bookish and good at school and stuck with it - attended university for humanity and arts, psychology degree
0:08:15
Ireland was conservative and psychology a little 'new age' - but for Brian, psychology had philosophical and science bent and novelty - interested in human nature, culture and diversity in spite of small town upbringing - curious about presumptions and assumptions - liked that psych is science and evidence based - became passionate about psych
0:09:45
Brian views psych as science of behavior, broadly defined - being a good psych clinician doesn't automatically make one a good scientist - Brian's area of research focus influences clinical psych like emotional, cognitive, physical stress - especially on cardio vascular and immune health
0:11:45
Brian motivated by the evidenced side of psych research - interested in prolonged stress effect on cardio vascular system because sustained emotional stress will have quantifiable measures in body
 
 Psychology_in_Crisis_book_cover.jpg
 
Calling out colleagues
 
0:13:00
About Brian's book - Psychology in Crisis - psychology is interesting because it is tempting for all humans to dabble in psych - like to discuss other's behaviour, social problems, decisions - attracts a lot of lay person effort - but some psychologists have succumbed to lay interpretation - psych is only valid with science and lay interpretation is undermining the psychological field
0:16:00
Working title was 'Psychology's Methodological Crisis' - but Brian acknowledges it is not snappy but is ambiguous - but "Psychology in Crisis" is a compelling title
0:17:00
A lot of clinicians frustrated by lack of prioritizing evidence based practice - likewise, a lot of academic psych researchers that are tolerant of looser approach - Psych is a discipline with a wide range of scientists - at one end are hard scientists, and the other end are the hard anti-science at the other - and lots of psychologists in between - lots in health psychology where evidence is not top of their agenda, helping people is - and that is the enemy of good science - the road to hell is paved with good intentions - and that interferes with good science
0:19:00
A lot of psychologists involved in physical and medical problems and they are committed to helping people - but the risk is that because rushing to help people undermines good science - area of health psychology is not good science - Brian became quite concerned that only a minority take evidence based approach and not interested in scientific rigor - classic dilemma between slow reliable process vs fast unreliable process, and a lot of psychologists choosing fast and unreliable
 
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Bad Scientists
 
0:21:00
Brian's book received a lot of attention - public response has been supportive and featured well around the world - in terms of academic psychologists, feedback have been positive, some conspicuously quiet, others written privately to support his work but criticize him for pointing out their lack of scientific rigor - but book praised throughout
0:23:00
Writing about risk of assuming we've dealt with psych crisis - asked to speak at conferences globally - generally, Brian is happy how book has been received
0:24:00
PACE Trial is a research study conducted over multiple years attempting to treat ME, a condition that is very debilitating - the concept was that providing treatment that included a behavioural and cognitive component, namely CBT (cognitive behavioral therapy) and GET (graded exercise therapy), would improve lives of people with ME - done in UK, over 600 participants and the authors claimed they had successfully treated ME patients
0:25:35
What is controversial is that on one hand it seems implausible because exercise therapy is reported to be harmful by patients - many psychologists when they saw the results of the study were curious as to what the details looked like - the PACE Trial proven to controversial and beleagured because of the methodology used has been severely critiqued - Brian reports on many flaws in study and Brian concludes it is a weak study and the conclusions are not appropriately grounded and some of the flaws are destructive to good science and an example of how science can damage people's lives
0:28:00
Biggest problem with PACE Trial is its conception - based on asking participants how they feel about intervention, so subjective reports by patients - any study that intervenes with patients should be 'blinded' so patients do not know if they are receiving treatment or not, but in PACE patients were told they would receive therapy, told therapy was good, told therapy was evidence based, told therapy is effective - then asked how they feel about the therapy - problem is therapy is based on teaching patients how to find benefits from situation, to talk about predicament in positive way, so by end of therapy they'd been taught to describe jar as half full
 
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Clinical Amateurism
 
0:30:15
Basically particpants were biased to report improvement that made the results look like therapy worked - so blinding not used, when blinding is required - and subjective data relied upon when it should not be - this is an elementary problem that is taught if 1st year psychology courses - example of how study should not be designed
0:31:30
When data eventually scrutinized by independent researchers, there were hints the data that if objective measures used, the therapy would have been ineffective - test of physical endurance showed no improvement - analysis of disability payments were higher after therapy - no objective evidence of recovery, only subjective reporting
0:33:40
Mutliple millions of Pounds of money committed before research carried out - would hope grant approval process had competent individuals assessing funding applications - seldom case that people deciding who gets funded try to root out bad research - they rarely test the competence of research designers, not scrutinizing quality of studies
0:35:45
Also, peer reviewed research in the UK have to assume that high profile applicants that applied would've been known to study grant awarders
0:37:00"
The Triumph of Emminence Based Medicine" blog post by Brian - an opinion piece - relates to very important researcher automatically seen as reporting quality work and considered bad manners to question the quality of this very important researcher by grant awarding bodies, by practitioners, by people who are conflict adverse and don't like people criticizing very important people - PACE Trial is example of Emminence Based Medicine
0:39:15
The R Word - Retraction - has not been retracted, has produced 2 papers and are not being considered for retraction - not every bad study is retracted - 100s of 1000s published every year, and number get retracted is very small - retraction is unusual - PACE Trial defendors are digging in and trying to promote therapy despite controversy
0:41:30
A lot of people criticize the PACE Trial, Brian simply reporting on what has transpired - no risk to his own career since he's promoting scientific rigor - consensus is PACE is example as bad trial, it appears in text books as example of bad science - only PACE researchers are defending their research
 
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Psychologizing the physical
 
0:43:00
Interesting cultural divide between US and UK - in US ME declared physical illness, but in UK ME declared as psychological illness - 2 different approaches tell a lot about social contruction of ME, it is a difference of opinion, not a difference of fact.
0:45:00
BPS = Bio Psycho Social and other psychosomatic terms: can have BPS explanation of any thing - originally BPS a sophisticated idea about where and how illness happens - however, replacing biological with the psycho-social is a fallacy - trend some psychologists believe don't need biological and try to define a physical illness in purely psychosocial terms - not really BPS model, just PS - a runaway train, out of control of reasoning - not unlike how psychoanalytic / Freudian view has taken hold in some countries and it is very hard to shift even when facts are known - try to psychologize everything
0:48:15
Some countries, some societies have completely dispensed with psychologizing the physical, but in the UK currently the idea has currency
0:49:00
Look at psychology as a whole - research methods seen key, very important - cannot have psych research without quantitative data - Brian promotes evidence based science and research - need to be assertive in promoting rigorous methods - providing empirical evidence of higher rigor - public realizes evidence is valuable, but we need to explain there is different types of evidence, good evidence and bad evidence - signs people in wider culture are internalizing those values
0:51:30
The volume of research produced annually is a commercially driven industry - university is looking at ranking of how their staff is publishing - the volume of bad science getting bigger every year - but Brian predicts people will approach science with degree of caution because of preponderance of bad science - but we're also becoming more conscious of this problem that bad science exists - now much wider understanding good and bad science
0:53:10
People in psychology arguing for rigor are being outnumbered - but greater awareness of problem - Brian's book one of many discussing crisis in psychology and spreading more widely
0:54:45
Greater awareness of science generally - climate change, vaccinations controversial science - risk of creating world where we don't trust any research and go back to 15th Century when important rich people decided what was fact - consensus is that the earlier we teach people about science, they'll be innoculated against problem of anti-science scepticism - question is how do you get that into the system
 
Brian_lecturing.jpg
 
We benefit from more science, not less
 
0:57:30
Vaccination controversy psychologically interesting - always been vaccination skeptics - trend in society for many years of approaching science with caution - not beyond possibility that society will destroy itself - nuclear war, climate change, pandemics, politically
1:00:00
We benefit from more science, not less - more rigor, not less - more care, not less - more time, not less in science - fear that society will leave science behind as unneccessary - but scientists argue for good science but first get our own house in order and make sure science we do we're happy to present to the world and be proud of
1:02:00
Brian looking at human individuality and diversity next - when looking at individuals we understand population better - challenge for psychologists is to look at individual differences, and only a minority look at that - most psychologists look at humanity as a general thing in humans in general - only some look at individual differences - looking at social attitudes and views of people and how that translates into social problems - rise populism, zenophobia, sterotyping minorities, all of these are lay psychological theory
1:04:00
How we get these theories and what does science say about them is the bridge Brian would like to research - explains to wide audience what we know about human diversity and why its important in evolutionary terms
1:05:45
Interested in how science industry work and how do we come to our current understanding - example, lots of stereotypes of how different races behave - Brian is interested in how culture stereotypes influence sciencitific review and the end science and lead us to a world where we churn out bad science in favour of cultural stereotypes - another example is gender differences and why so much research in the industry conforms to prior assumptions instead of challenging assumptions.
1:06:45
Psychology overlaps with a lot of areas, and crisis in psychology cuts across other areas: medical, pathology, epidemiology, etc - psychology can be ahead of the pack in dealing with these issues and sorting out these problems - and they occur across the sciences - if get psychology crisis corrected, can make a big influence outside of psychology
1:08:00
So many people working on this problem that Brian is hopeful for the future.
_________________________
 
Support the podcast on Patreon - https://www.patreon.com/MedicalErrorInterviews
 
Meet the podcast host Scott Simpson, an online counsellor at Remedies Counseling
 
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Kelly Anne Branco: The Gift of Cancer

Kelly Anne Branco: The Gift of Cancer

July 11, 2019

 "The Gift of Cancer" - these are the words of Kelly Anne Branco - and in this interview she shares how the medical error and cancer diagnosis have lead her on a journey to take those tragedies and make a greater meaning personally and through patient advocacy.

 
The medical error impacts every aspect of Kelly Anne’s life, but she has adopted an attitude that forgiveness is a gift you give yourself.

 

KELLY ANNE BRANCO - SHOW NOTES:

A sickly child

0:04:50
Kelly Anne was born in Toronto, St Michael's hospital - grew up in Toroto - mother came from Azores - Dad came after his military service - a lot of family on her childhood street - working class neighbourhood - an awesome place to grow up - late 80s moved to Mississauga at age 10
0:06:30
Mississauga is a suburb just west of Toronto - nearly 1 million population now, but like small town back then - Mom did office work, Dad a construction foreman until his traumatic brain injury (TBI) - this made him more difficult to live with - and he couldn't work
0:08:30
Kelly Anne was a sickly child, always problems with her instestines - but her symptoms dismissed and minimized - but in her 20s, Kelly Anne started to have anxiety and panic attacks associated with stomack pain - terrified to leave the house for fear of being sick
0:09:50
Took a while to get her GP on board - who dismissed her symptoms as psychiatric - and sent Kelly Anne to a gastroenterologist - but had to fight to get referral - took 6 months to get appointment with gastro, but within 5 minutes had diagnosed Kelly Anne with celiac disease - probably since a child
0:11:15
Kelly Anne goes back to her GP and says I told you so - the GP apologizes - is willing to learn is what Kelly Anne likes about her - this is just a few years before her ovarian cancer symptoms emerged
 
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Medical errors start in early life
0:13:15
Kelly Anne describes celiac diagnosis and treatment - gastroscopy found very poor absorption of vitamins and minerals - within a year intestines started to heal
0:14:45
January 2012 Kelly Anne stopped getting her period, it was odd - thought maybe it just stress or her birth control pills, so didn't worry about it - but after months passed she started to worry so went to see her GP - sent for ultrasound and they found a mass on right ovary - referred to gynecologist in August 2012
0:17:10
Stressful waiting for appointments, not knowing what's going on with her body - unknown is the worse part - wondering about having kids
0:18:45
Gynecologist asks Kelly Anne about other symptoms, but she has none - doctor asks why she's worried and to stop complaining, lots of women would like not to have their period - doctor is ending meeting and Kelly Anne asks if the doctor is going to examine her - huffily the doctor acquiesces and Kelly Anne has a 'quite rough' examination - dismisses ovarian mass as probably just a cyst
0:20:15
Doctor did not so usual cancer checks (CA125 test, biopsy) - just sent Kelly Anne away with new birth control perscription - she felt foolish, an idiot, scared, questioning self - the new birth control pill re-started her period and that reinforced the self-doubt and everything is fine with her body - but later, found out her body was not fine
0:23:15
January 2013 her period stopped again - had surgery to have her gall bladder out, so blamed the stress of surgery - had put on a lot of weight, became pre-diabetic, had seen what diabetes had done to relatives, went on strict diet, causing gall stones - pain in hte middle of the night brought Kelly Anne to ER - gets ultrasound, we'll call you with results, but they didn't call her with the results - she has another gall bladder attack
 
Gallbladder_gallstones.jpg
 
Gallstone surgery
0:25:30
Kelly Anne passes gall bladder stone - 'most horrendous' experience - finds out that she has lots of gall stones and needs surgery - took 2 months to get surgery - living off baby food oatmeal for 2 months
0:26:00
What they didn't know was that Kelly Anne had a tumour and a weakened immune system heading into the gall bladder surgery - infection post surgery
0:28:05
Back to family doctor - another ultrasound and MRI showed the 'mass' had doubled in size - Kelly Anne said she did not want to go back to that same gynecologist - Sept 2013 sees new gynecologist - but got her period again in July, but it didn't stop, getting increasingly heavy flow - pain shooting down her leg, anxiety, bloated - started carrying her 'diaper bag' for such heavy bleeding - new gyno runs fertility clinic - did ultrasounds in her office and reviewed by gyno - great bedside manner
0:32:00
Gyno says could be cyst or fibroid - recommends laproscopy surgery to remove cyst or fibroid - no discussion of running blood work to rule out cancer - for the next months, symptoms worsen - by January 2014 Kelly Anne has surgery with gyno - finds out that the mass had gotten so big, it had consumed her ovary
0:34:10
gyno couldn't remove the mass via laproscopy - so tries to 'schuck' the mass to seperate the mass from the ovary, but couldn't so decided to remove the whole ovary - she morcellated (minced) the mass and ovary - chopped it up and pulled it out - the worse thing you can do with cancer because the cancer cells go everywhere
0:36:50
After surgery, gyno says Kelly Anne will recover in a few days, they'll send the mass to pathology, and she'll see her in 6 weeks - Kelly Anne describes the surgery prep and the gyno's empathy and support and great bedside manner - had a great recovery, felt good
 
 gastroscopy_procedure.jpg
 
Granulosa Cell Tumor
0:39:30
Back to the gyno for 6 week follow up and Kelly Anne knew that the pathology report would be back - gyno gave a summary of the report, but did not give the pathologists comments or recommendations - gyno says Kelly Anne has granulosa cell tumor but its benign, don't worry, but come back in 6 months
0:41:30
"I trusted her" - periods normalized, feeling good - felt like normal healthy human being - returned twice to gyno for ultrasounds - gyno says come back in 8 months, June 2015 - but spring 2015 new mild symptoms emerge
0:44:15
Heartburn, bloating but just chocked it up to stress - but still getting period so thought 'its nothing' - but in March called to book June appointment, but got appointment beginning of May - symptoms continued0:46:20Has appointment in mid May for pelvic ultrasound in gyno's office - gyno says there is something big on your ovary and need to get it out - also books Kelly Anne for MRI in mid July
0:47:25
Kelly Anne goes for pelvic MRI - but after, the MRI technician wouldn't look her in the eye - but says, robotically 'you're perfectly fine' - Kelly Anne could tell she was lying - there's something wrong - she actually got the MRI in late May, so had been prioritized - gyno calls Kelly Anne and askd her to come into the office the same day.
0:50:10
Kelly Anne goes to gyno Monday June 1st who says there is a lot of stuff there (ovary) and going to send you to cancer pre-op consult - gyno says just a precaution as her tumour is benign and denies Kelly Anne has cancer and dismisses her concern - Kelly Anne tries to down play her fears, but couldn't imagine it was as bad as it was
0:52:30
On Friday morning, while at work, Kelly Anne gets a call from the cancer centre saying she has to come in that day - Kelly Anne realizes something is very wrong - but is told she has to go to another hospital to pick up her MRI results for the cancer centre
 
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Its not benign, you've got cancer
0:54:20
Borrows Mom's car to drive to get MRI results at one hospital before driving across city to cancer centre - the admin behaviour and facial expressions showed concern, made Kelly Anne feel weird - sitting in waiting room with chemo patients, feeling out of place, didn't click what was going to happen
0:57:30
Onclogist says 'it looks like you have a recurrence of your cancer that you had last year' - this is the first time any one said she had cancer - shocked, all Kelly Anne could say was 'I have cancer?' - the oncologist says 'yes, you have cancer, you had cancer before' - Kelly Anne tells him she's not been told she had concer before, that the tumour was benigh - the oncologist gets frustrated, 'its not benign, you've got cancer'
0:58:45
Kelly Anne asks how bad the cancer is - the oncologist says it is everywhere on her uterus and left ovary that she'll have to have CT, biopsy, surgery, hysterectomy, chemotherapy, blood work, urine example - left with more appointments and to return on June 19th
1:00:00
At that appointment Kelly Anne had Mom and her boyfriend with her - oncologist says cancer is everywhere in her uterus, tubes, ovaries, colon, bowel - we need take out uterus and cervix and appendix - will be a rough surgery, then chemo
1:01:00
The oncologist suggests Kelly Anne see a fertility doctor to harvest eggs before surgery - Kelly Anne is offended and gets angry - she's already decided that if the choice is to delay surgery for a fertility appointment, her life is more important, so not delaying surgery - but oncologist is insistent and gets Kelly Anne into fertility clinic next day
1:03:10
Fertility clinic examines and says there is nothing they can do because of so much cancer around her ovary
1:04:00
Kelly Anne has surgery end of June - hysterecotomy, but save bowel - also removed appendix and other abdominal cancerous tissues - surgery a success, but big scar on her belly - 2 months to recover before starting chemotherapy in late August
 
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Chemotherapy
1:05:50
Because Kelly Anne was stage 3C, fairly advanced, the oncologist wanted to try something different, very aggressive - treated with BEP, that has 3 drugs, including a platinum drug reserved for advanced cases as it is so hard on the body
1:07:00
They wanted 3 cycles of chemo - but also had an infection and open wound - still feeling weak, not sure if healthy enough for chemo, but doctors insist to start - after first cycle of 3 weeks whipped out her white blood cells - developed fever, infection and hospitalized for 5 days with IV antibiotics - realizes they may kill me trying to cure me
1:09:20
Chemo trying to kill cancer cells, but affects other cells - Kelly Anne realizes it is going to get worse before it gets better - Kelly Anne tells her Mom she's not going for second cycle of chemo - but went for her Mother - the worst 3 months of life, felt like she was dying
1:11:40
At the end of a chemo cycle she would have lymphedema, swelling legs, face, nueropathy in hands and feet, losing feeling in arms and legs, intense heart beats, resting on stair case to make it up, vertigo, tinnitus, lots of sleep, loss of hair, pixelated vision - couild only keep oatmeal down due to nausea - it was absolute hell
1:13:20
November 2015 to see oncologist - he says all clear, no evidence of disease - but during chemo, asking herself how this happened - so called gyno office and asked for copies of all her records and went to pick up her records but receptionist pretends she doesn't know Kelly Anne
1:15:00
Kelly Anne subsequenlty learns that when it is cancer, the doctor has to get a second pathology at cancer centre, so she wanted records from the cancer centre too - in reading gyno's notes, the pathologist had said that patient should be referred to onclology for staging and assessment - this is not what gyno told Kelly Anne - but pathologist's January 2014 report said nothing about it being benign.
 
MORTALITY_feet_morgue.jpg
 
Facing mortality
1:16:45
But Kelly Anne discovers that 1.5 years of gyno's notes are missing - and when Kelly Anne gets hospital records, they had no notes from prior to her surgery, no 2nd pathology from gyno doctor - Kelly Anne livid, this is not right - but puts it aside as she is so sick from chemo - lots of support for cancer patients, but when done chemo done and given NED label - 'no evidence of disease' - support ends
1:19:45
That's when the weight of diagnosis and loss of health and grieving hit Kelly Anne - a real eye-opener to address your own mortality - wanted desperately for normalcy - took 6 months to focus on recovery and return to work
1:21:00
But in March 2016 at follow up scan, they found more disease - that's when she started to mobilize to learn and connect with people online with granulousis cell tumours to share - met people who had lived with it for 15 - 20 years - learned that if she had treatment when initially diagnosed, she could have a better potential outcome
1:24:00
Learned of hormone therapy to maintain stability - was a sponge aborbing all the research - tranferred to a medical oncologist (vs earlier gyno oncologist) - wanted to try hormone therapy
1:25:30
Kelly Anne discovers 3 types of doctors: those that want to heal people, have empathy, compassion and listen - also science geeks want to heal people, but only want to deal with the person from neck down - the 3rd type is all ego, love the prestige and misdiagnose - but she had a great doctor who was open to try
1:27:00
Did a couple of months of a medication, hormone therapy - ovarian cancer they now know, is driven by hormones - hormone therapy suppresses hormones - may keep patient stable, and live a long time with cancer, or shrink the cancer - may be able to lead a normal life - whereas chemotherapy is much harder on the body
1:30:20
But the hormone therapy didn't work for Kelly Anne and cancer progressed and they found it on her liver too - so advised to try a different chemo drug and Kelly Anne agreed and started it March 2017
 
Medical-Malpractice_gavel_and_stethoscope.jpg
 
"Forgiveness is a gift you give to yourself"
1:32:00
Different side effect experience on the new chemo drug, but sill lots of nausea and fatigue - from her previous chemo, Kelly Anne became pre-diabetic due to the steroids - this time for chemo, she only did steroids with the infusion - took CBD oil instead and was not pre-diabetic by end of chemo - also took other supplements to help with side effects
1:34:15
But her cancer started to grow exponentially be the end of chemo - felt like she did all this for nothing - during this time Kelly Anne also sought legal advice about her mised diagnosis - the lawyer said that she did have a case, but the reality was that in Canada doctor's are protected by the Canadian Medical Professionals Association
1:35:00
The lawyer says - Tax payers pay the premium that pay the physician's lawyers - will be at least 4 or 5 years before a trial because they always fight and take it to trial - they will put you on the stand and blame you for not following up - it is very difficult to litigate these cases in Canada - it will cost you money and the most you can sue for under the law is your lost wages - and then your employer can sue you to recover the disability payments they paid to you - lot of work for minimal return
1:37:00
In Ontario, part of the physicians agreement with the provincial govt, is that the Ministry pays the CMPA premium - and the Ministry is funded by tax payer dollars - in the news the College of Physiciand and Surgeons of Ontario (CPSO) has had problems with disciplining their doctors
1:39:00
"Forgiveness is a gift you give to yourself" is one of Kelly Anne's values - willing to say the gyno doctor made a mistake, they are human - need to move away from mode of thinking of doctor's know everything - but I needed to know the gyno had learned her lesson so no other woman would go through what Kelly Anne did - so did not move forward with a law suit - instead filed a complaint with the CPSO that the gyno had practiced outside of her area of expertise - she's not an oncologist, just a gynecologist
 
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Stopping the medical harm
1:41:10
Complaint process includes a rebuttal from the phsycian - Kelly Anne was gobsmacked that the doctor would still profess that Kelly Anne never had cancer, she was lying, she was wrong
1:42:29
Kelly Anne replies that the gyno failed to proved Kelly Anne with a year of her file - that Kelly Anne did have cancer and here's the report - but Kelly Anne got great support from the cancer community in preparing her reply
1:44:30
Gyno claims to have called the cancer centre, but no records exist - and not proper protocol by gyno
1:45:45
With ovarian cancer, it is not uncommon for doctors to ignore or mis-attribute symptoms - that's why mortality rate so high for ovarian cancer - 50-60% diagnosed pass away in 5 years
1:47:10
Complaint went to CPSO committee, 6 months later Kelly Anne got the decision - they said they sent gyno to remediation - made her change her practice so no longer allowed to do ultrasounds in her office without a radiologist reviewing the scans
1:49:00
CPSO not looking to see if other of gyno's patients also harmed - Kelly Anne's doctor is 'type # 3", it is all about her ego
1:50:30
Kelly Anne hopes gyno has learned her lesson and that other women aren't harmed - making her change her practice is a huge win because a radiologist will review scans - hopefully remediation and the slap on the wrist will help people get right diagnosis - prevention and early diagnosis is key
1:51:45
Has been a spiritual journy - 'forgiveness is a gift you give yourself' - when facing your mortality, start to ask what is my purpose, what do I want out of this live, what do I regret - wants to leave place better then I found it - went to CPSO and made complaint
1:53:00
Kelly Anne has come to a place where she accepts this is her journey and this is how it unfolded
1:54:00
Finished chemo July 2017, disease really accelerated - fluid in lung, abdomen, couln't eat, couldn't breathe, constant pain - made decsion to do surgery again - drain lung first by going in through rib cage with a tube and pump out fluid, 2 litres - could breathe when she woke up, felt marvellous - then being able to walk and eat, had regular bowel movements
 
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Dying
1:57:00
Was dying before surgery - but they were able to resect her liver, removed spleen, resected bowel and reattach - cleaned as much disease / cancer they could see, but some left behind - removed 5 litres of fluid - 170 staples and tension sutures - lost a lot of blood - woke up without pain meds - lots of pain, had to wear binders to hold stitches - under for 9 hours of surgery
1:59:30
Heart took a hit - took 8 months for resting heart rate to get back to normal - but within 2 months more cancer - at this point it is chronic, not hoping for a cure - stability is realistic goal - have met women that have lived 20 30 years - just matter of finding right combo of meds - ongoing discussions with oncology doc about meds to try
2:03:07
In 2017 sought 2nd opinion from US hospital - and oncology doc was open to their opinion2:04:30Canada behind updated cancer monitoring - the last year has been trying to find right meds combo - including $10k a dose med 4 times, but it didn't work - new med means small tumours have stopped growing, medium sized tumours are slowing down their growth, but large tumours are being stubborn - added another med suppresses hormones and seems to be helping
2:07:30
Some meds tolerated better than others - side effect caused blood clots and trips to emergency room - pain and fatigue - can sleep 12 hour and nap 4 hours and feel like need more - losing hope will be able to return to work
 
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 Making meaning out of life
2:09:00
Gifts from this experience is advocating with Ovarian Cancer Canada and a program called Survivors Teaching Students for medical schools and nurses and share their stories - worked with pharma companies, share her experience at conferences - also Patient and Family Advisor for psychosocial care - when you're ill it affects physical, emotional and spiritual
2:12:30
Whole life trajectory changed, want something different - healing journey - meet, connect, bond with other patients - a lot of good has come out of this tragedy - there is old Abroriginal saying that when you heal yourself, you heal 7 generations behind and forward - healing family relationships because of cancer experience
2:15:15
Wouldn't trade cancer because all of these great things have happened - perspective shift is the gift of cancer - connecting deeply with others is meaningful is liberating - feels freer, happier, more joyous having gone through all this - I like the person I am now then I was before
2:18:10
When you're sick you realize you can't take anything with you, and what you really want is to have the people that love you, around you - I've accepted and embraced that this is how my life is unfolding
 
The Gift of Cancer
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Host Scott Simpson