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
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
"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 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 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 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 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 Connect with Varda Burstyn: Varda's websites: VardaBurstyn.com Dispatches from the Chemical Edge Twitter: @TheChemEdge Facebook: The Chemical Edge 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. Scott Simpson, Counsellor + Podcast Host + Patient Advocate
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