Medical Error Interviews
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.



Fit, healthy and productive until...

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
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
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
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
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
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
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
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
Entering Hell
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
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
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"
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
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
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
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
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


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
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
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
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
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
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


Expecting to die

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
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
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
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
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
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
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
Lucky to be alive
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
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
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
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
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
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
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
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
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
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
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
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
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
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
Calling out colleagues
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
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
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
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
Bad Scientists
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
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
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
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
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
Clinical Amateurism
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
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
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
Also, peer reviewed research in the UK have to assume that high profile applicants that applied would've been known to study grant awarders
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
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
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
Psychologizing the physical
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.
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
Some countries, some societies have completely dispensed with psychologizing the physical, but in the UK currently the idea has currency
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
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
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
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
We benefit from more science, not less
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
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
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
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
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.
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
So many people working on this problem that Brian is hopeful for the future.
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Jeff Wood: The new Patient Zero: Hear how Jeff overcame years severely ill, bed bound, & medically abused to find his own diagnosis.

Jeff Wood: The new Patient Zero: Hear how Jeff overcame years severely ill, bed bound, & medically abused to find his own diagnosis.

May 29, 2019

Jeff Wood has one of the greatest Lazarus-like life stories you will ever hear. Jeff’s experience is made even more remarkable by a health care system that denied he was even ill. Jeff was so sick and disabled he spent years bed bound requiring care from his family, while physicians told him he was not really sick and that he had psychological problems.

But Jeff was very, very sick, and through his own tenacity and own research from his hospital bed, was able to determine the cause of his inability to be vertical, set up a meeting with a world renowned neurosurgeon, get a diagnosis over his phone, and a referral from that neurosurgeon to transfer Jeff to his hospital for surgery.

But the current hospital, deeply ego invested in their psychological diagnosis, refused to transfer Jeff for the surgery, while they continued to verbally and psychologically abuse and torment him.

I am amazed by Jeff’s journey to hell and back, but especially by his rational and grounded account of medical errors that can be traced back to when he was a toddler, and his determination to help other patients not have to endure the medical error and abuses he survived.




Jeff talks about how his story will blow people's mind - his tethered cord, leg and foot pain as a child, Jen Brea


Tethered cord and its relationship to craniocervical instability (CCI) and the 3 parts to our spinal cord, but Jeff's cord was still attached, but he had no idea except for leg and foot pain until he was 4 years old - diagnosed with 'anxiety'
Dr Petra Klinge - top tethered cord surgeon in the world - a lot of her patients also have CCI - 2 conditions often occur together
After Jeff's CCI surgery, he started to experience the same foot pain he had as a small child - 2nd surgery to free his cord - more symptoms went away
Jeff thinks if he had of been diagnosed properly as a 4 year old and had the tethered cord surgery, he would not have developed CCI as an adult and lost 4-5 years to severe illness
Two conditions related to tethered cord: Spina bifida and Ehler Danlos Syndrome (EDS)
Jeff studied cognitive science - standard childhood - he is interested in the human mind - mutliple realities - how do we open our minds?
Working toward his Doctorate - but started to get sick with 'mild' ME (Myalgic Encephalomyelitis) in Graduate School (end of 2011) - had bad flu but didn't get better - only half the energy he used to have - shocking, didn't know what to think - 'I'll just push through and it will go away' - it didn't, the more he pushed, the sicker he got
Can't socialize, can't go to the gym - had to go part time to school - then ended up bed ridden June 26 2014.
How being severely ill impacted his relationship - Jeff's parents came to help take care of him - put fridge in his room - couldn't prepare meals, needed help bathing
Many tests and specialists but none could figure out his problem - Jeff would try to generate hypothesis to explain his symptoms - but the doctors would say he was healthy, that maybe he had anxiety - imply he was depressed or malingering or take advantage of medicine or seeking attention
After bad crash in 2014 Jeff started looking into ME - started seeing Dr David Kaufman
Relieved to find illness, ME, that matches his symptoms - but no known cure, and is life long - a death sentence, overwhelmingly sad
Dr Kaufman history of HIV physician - works with discriminated populations - had moved onto the puzzle of ME - a very compassionate doctor who understands some patients are harmed by health care system - same office as Dr Bela Chheda
First visit with Dr Kaufman - he was very curious - wanted chronology of symptoms, Kaufman was very prepared, very good listener - Jeff had to lie down during appointment because he walked but too embarrassed to use his wheelchair - Kaufman did not blink - diagnosed with POTS (postural orthostatic tachycardia syndrome) - autonomic system dysfunction when going from laying to standing, heart rate, blood pressure affected - took lots of blood for testing
Jeff learns for first time he has abnormalities in his blood in spit of many tests over previous years - Epstein Barr virus (EBV) - IgM antibodies for acute infection - IgG antibodies indicate persistent infection - Jeff recently infected with EBV - but Kaufman sees it a lot in ME patients - but when Jeff gets to wear neck collar, his titres disappear
Jeff explains how brain stem compression can affect the immune system, autonomic system - turns out both systems work together - cause downstream effects including energy and Kreb Cycle - Dr Ron Davis had found abnormalities in energy metabolism in ME - if you have a structural problem in your brain stem it can impact auto, immune and metabolism, all found in ME - endocrine problems too? Jeff thinks there would be
Also found Jeff's natural killer function low late 2014 - unsure why - discovered very low vasopressin causing frequent urination - also a symptom of tethered cord because it is a neurological problem - neurogenic bladder - Jeff basically had no vasopressin hormone - associates tethered cord with frequent urination as his body tried to create a new balance - ME structural problem triggers cascade of symptoms
Started antivirals for EBV, 2 standard meds - also started 2 meds for POTS and some symptom relief but would then be too active and crash / get sicker - likens meds to a bandaid, but had to 'pace' - budgeting energy - if Jeff made breakfast and showered he'd be sick for days, but if only made breakfast, he could shower the next day
ME, Myalgic Encephalomyelitis - Jeff explains a 'crash' from exertion, like showering or making breakfast - equates showering to running a marathon without any training and carrying 40 pounds - the more severe ME, the less a person can do - Jeff couldn't even shower on his own, he had to have people to wheel chair him to the shower chair and directly back to bed and that would cause a crash
Periods when Jeff is so sick he cannot speak, then did not have energy to write simple notes - crashing can be caused by light and sound - Jeff experienced this, he could not tolerate light, it would crash him for days - dark room, ear plugs, only showered every 2 weeks because it would make him so much sicker - very low quality of life
Jeff became more severe in 2015 after starting to see Kaufman and had some improvement but Jeff pushed himself and crashed into severe - emaciated, extremely pale - Jeff's Mom said he looked like he was dying of cancer - only when he was very severe did Jeff look ill, contributing to dismissal by doctors
Jeff's partner and parents knew he was ill even though doctors said Jeff was fine - Jeff's partner saw his daily decline - fortunate to have support of partner and family - Jeff's mental health had to fight to want to keep going, to live, to figure out what was going on - even though he knew the odds of getting better was slim - but he was going to try to defy the odds and had to psych himself up - Jeff would say to himself when feeling overwhelmed and hopeless, he'd focus on good things like his cat and his partner - profound grief and sadness from his situation, but not depressed because he wanted to do things
With ME, Jeff wanted to do things, be social, but too ill
When very severe, Jeff realized that only improvement came by being completely still, no talking, no movement - after few days slight improvement - realized he needed to do extreme pacing to get small gains - now understands that was taking pressure of his brainstem by being supine - allowing body to heal
One day Jeff's neck started to hurt - had root canal and some teeth removed, noticed he had to chew differently - then 'boom' his neck was very painful and getting headaches - felt like his head was sinking down between his shoulders - breathing difficulty when upright - felt like 'the opposite of winning the lottery twice' - very sad situation with ME and completely new problem - went to emergencvy room (ER) several times and treated horribly
Jeff reluctant to go to ER - had horrible, traumatizing issues when going with ME symptoms - Mast cell issues - assumed Jeff had psych issues and labeled him with anxiety - ER physically ejected him by security - so when neck problems developed he had to try 3 different ERs in one night but none would help - Jeff asked for cervical collar and that was helpful
Collar is helping, breathe easier - will tide him over until he can get more help - but not getting any where in California in spite of research being showed to specialists - journal articles about CCI and how they can cause every symptom Jeff had - took them to Stanford hospital and University of California, San Francisco (UCSF) hospital but doctors offended Jeff would self-diagnose, and dismissed him and journal articles
Jeff gets MRIs but they are read as 'normal' but Jeff knows from his research that he needed specific type of MRI so specialist can interpret - pivotal moment when he got admitted when he switched to 'weaker' collar, but soon collapsed, but sill couldn't sit up - something had fundamentally changed - waited 24 hours still could not sit up - perhaps 'stronger' collar weakened Jeff's already weakened muscles - Catch 22 - but Jeff so severe, the collar allowed some function
Jeff thinks CCI symptoms is extension of ME - but once Jeff had CCI surgery, his ME symptoms lifted - tethered cord since birth, pulls on brain stem, related to EDS
How does viral infection fit into this puzzle? 2 ways: virus can degrade collagen / ligaments - if you already have EDS, even more vulnerable to viral degradation of collagen - 2nd way is already have structural problem impacting immune system, then a viral onset may cause CCI / ME.
Admitted to local hospital, they were hostile to him always, that didn't change - Kaufman and family advocated to get Jeff admitted - they did MRI but not the right one to detect CCI and no CCI experts in California - but Jeff knew he needed to get to a hospital with CCI neurosurgeons - but this hospital treated Jeff as malingerer - finally a neurosurgeon coerced to see Jeff, but surgeon lied about EDS and CCI knowledge - arrogance factor
"I was very traumatized" - Jeff knew the only way to get through was to fight - hospital cruel and hostile to him, causing trauma - systemic medical abuse - iatrogenic harm
3 weeks flat on back, head down, feet up in hospital - transferred to world renowned hospital that considered very, very good - abuse intensified at new hospital
Nurses generally very kind - doctors were abusive - they gave him cerebral spinal fluid (CSF) surgery in case he had a leak - when that didn't work, they became more hostile - told he needs to accept there is nothing wrong with him - wasting our time - abuse by residents, physical therapists in spite of Jeff vomiting - but 2 internists validated Jeff's symptoms but they were powerless - others would berate him - Jeff wanted to be transferred to east coast to see CCI doctors, but they refused - they tried to transfer Jeff to a nursing home
Jeff recounts laying in hospital bed having a consult with east coast surgeon via skype - Jeff gets diagnosed with CCI via video conference by looking at images - but hospital refused to transfer Jeff to east coast - so forced Jeff to endure abuse and torture and threat of financial ruin - these same neurosurgeons at same hospital also did same thing to a female with CCI - Jeff experienced new level of abuse, mistreatment - expresses empathy for others experiencing same
Jeff's family helps get insurance coverage, but it took months to change health insurer so he could to out of state for care - had to hire attorney to prevent hospital from shipping Jeff to nursing home - his lawyer tells him that he must have a family member with him at the hospital 24 hours a day so the hospital doesn't transfer him - fortunately no homes would accept him - treatment from hospital staff much worse when Jeff's family not in room
Contrasting health care experiences with something common and simple like broken arm to treatment when having complex illness
Hostile hospital runs more tests and do find CCI and put Jeff in the halo he'd been asking for since he was admitted - Jeff's explains screws put into his skull to hold head in place - used until he got surgery
First week of halo was difficult but Jeff adjusted - but gave him freedom from bed bound - he could stand up! "Felt like freedom" - Jeff's legs like toothpicks because of atrophy
Waiting for surgery with halo - then had surgery Jan 31 2018 - drilled holes into Jeff's skull and first and 2nd vertebrae and implanted plate to stabilize neck / head - 7.5 hours of surgery - had lots of pain meds coming out of surgery - but 'a hiccup' compared to years of severe ME - no more POTS, post exertional malaise - viral and urination normalized - light and sound sensitivity and brain fog disappeared - but hard to have hope but slowly accept that surgery helped ME
Jeff first person to link CCI and ME - wants to make others aware - Phoenix Rising forum to share info for ME patients
Dr Peter Rowe paper 3 people have ME but found to have CCI and surgery cured their ME - up to 10 people with CCI diagnosis, including Jen Brea - more people getting tested and treated - Unrest documentary about ME made by Jen Brea - both are sharing their CCI stories
Dr Chhedda works same office as Dr Kaufman - Jeff originally took CCI article to Kaufman - Jeff is 'patient zero' - Kaufman believed Jeff and wants to solve problem and help patient - Centre for Complex Diseases
Jeff decides to tell his story publicly - feels he 'had to' tell people - when patients come together we can pressure the system to act quickly
Jeff's website and twitter account - will build Facebook page - wanting to partner with MDs and organizations to incorporate CCI into diagnosing ME - want to shout from roof tops so this knowledge can be intergrated into ME care
As Jeff was repeatedly mistreated, he became angry and that is driving him toward patient advocacy - Jeff thinks he will be 100% recovered - amazed by his progress - had accepted he would never get better - hard to believe he's not living like that any more
Mast cell problems and POTS disappeared after surgery - can go to gym, go for a run, be around his cats
1:47:30 End

About the podcast

I’m Scott Simpson, a personal counsellor by day, a podcast host by night, and a sick and disabled patient advocate surviving medical error.

My hope is that by sharing stories of medical error, we can bring awareness to this 3rd leading cause of death, and implement solutions for patient safety.


But the podcast is not just about medical error experiences, I also interview people who are trying to make health care systems safer for all of us.

Turns out that a lot of people working on patient safety, have personal experiences with medical error.

The airline industry is quite transparent about their safety incidents. The exact opposite is true about the medical industry.

They work hard to ensure the public does not get easy access to data about medical errors.

Medical Error Interviews brings transparency to medical harm and death, giving voice to survivors and change makers.

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