Imagine back to when you had a bad flu. Remember the nausea, head spins, pain and soreness, vomiting and diarrhea, and crushing fatigue? Remember how the worst lasted for a few days? Now imagine having that flu for a few weeks. Or a few months. Or like Jeffery Smith, for a few decades.

Now think of the millions of COVID patients. A good number of the survivors are not fully recovering from this ‘flu’ bug. They remain sick for weeks. Soon they will have been sick for months. And if they are unlucky like Jeffery, they may be permanently sick and disabled, and the health care system will effectively abandon them.

Most doctors didn’t take Jeff’s ongoing flu symptoms seriously, dismissing them and subtextually blaming Jeff for being emotionally weak, or not trying hard enough, or not really wanting to be healthy. You know, gaslighting. So when Jeff started to have bowel symptoms, he didn’t tell his doctor. Who needs to be invalidated and gaslighted?

But it turned out Jeff had a tumour and needed surgery and suddenly the health care he received was empathic, prompt and validating. A stark contrast to the years of dismissal and gaslighting of his flu symptoms.

As Jeff explains, the tumour for which he received exemplary care only impacted his quality of life a fraction compared to how the never ending flu shattered his future. And as the COVID deaths and infections continue to rise, the people who do not recover may also experience disbelieving doctors, and a health care system that doesn’t care.

SHOW NOTES:

0:06:00 Jeff grew up in a small hockey town in Campbellford in Canada - and Campbellford in the 70s was more like the 50s, it was an alternate universe 0:07:00 Jeff's childhood was traumatic - he was gay living in a small town wherebody played sports or worked on the farm, where Jeff liked to watch old movies, like with Lauren Bacall, and draw their dresses - so school wasn't a safe place, and home wasn't safe because his mother had emotional issues and had a traumatic childhood, so Jeff didn't feel safe at school or home 0:08:00 Jeff didn't feel safe until he moved to Toronto for college - he was not liked by other kids because he was 'other' - but when he came to college he was suddenly popular even though he was the same person, so that was confusing and fascinating - Jeff always thought he'd not live long 0:09:00 Jeff was very sick as a child - 9 convulsions before he was 5 - doctors found Jeff had really bad allergies - they put an air conditioner in his bedroom, and Jeff felt better in the room so spent much of his time there, especially in the summer - if he went outside the heat would cause convulsions - so as a boy, Jeff got in his head he wouldn't live long 0:10:00 In grade 9 Jeff missed 3 months of school due to the flu - he started allergy shots when he was 5 years old - those helped, and the convulsions stopped 0:11:00 But in grade 9, the non-stop flu for 3 months came with fever, swollen glands, etc - when Jeff got over that and everything was okay until he got mononucleosis at age 19, during the summer 0:12:00 For 2 months Jeff couldn't really lift his head off the pillow - he had to pee in a pail beside him - it lasted 2 years of fevers, night chills - it was 1985 and the AIDS pandemic was just emerging and Jeff thought he must have AIDS, even though he'd never had sex 0:13:00 So doctors could see by Jeff's symptoms including swollen glands, that he was sick, they just didn't know why - it was rought to transition during the mono to move from home to Toronto and go to college 0:14:00 Jeff would go to school and crawl into bed after - so it was challenging, but he loved the subjects and the positive attention and learned some of his own value - Jeff remembers wondering if he had irritable bowel syndrome (IBS) because of the diarrhea, easily 10 times a day, every day for 2 years - so that meant leaving class, getting up in the middle of lunch, etc - yet trying to appear healthy and normal 0:15:00 But life was really good - trying to find a career, had lots of friends - Jeff's health was okay during this period, from 21 to 30 with okay-ish, but some bad periods with bad allergies - including missing 3 weeks one time 0:16:00 One time Jeff bought a plant, but didn't realize for weeks that that was what was making him sick - but Jeff was told my different doctors he had 'post viral malaise' - Jeff was working in a bank to earn a living 0:17:00 Then he met his partner, who would become his husband, and that's when his life really started - Jeff was 24 when they met, and Jeff was enjoying relatively good health - Jeff's allergies are anything in the environment, plants, trees, grass are the worse - he was on shots for 24 years and tested regularly 0:18:00 Jeff always scored the highest on allergy testing for grass, trees, mold, pets - Jeff lived on daily allergy pills for decades - the weather changes really affect Jeff too - so its really bad now, in the spring - it also affects his immune system 0:19:00 Jeff's immune system has been over worked since birth, so he's interested in how that realtes to mast cells - in Sept 1996 Jeff caught the flu, the regular bad flu 0:20:00 That flu has been with Jeff every day since Sept 1996 - Jeff says that if you think back to when you had the bad flu and remember how you felt - head spinning when you were not laying down, having to hold onto things - chills in your body, pain, dizzy, fatigue - fatigue so bad that you wait 20 minutes to turn over - if people can remember those feelings, and that that lasted maybe 3 days 0:21:00 Take that to 3 weeks and nothing changing, nothing getting better - then try to imagine getting up, putting on clothes while you're sweating, holding onto the sink - getting yourself to the bus, streetcar, subway, but not having the energy to stand, and having to lean - trying to make it through the work day, but not meeting your obligations, cognitively or energy wise -- now extend that 3 weeks to 3 months and you're still not better and people at work are saying your performance is down 0:22:00 And your doctor at 6 months keeps saying post viral malaise - but you can barely work, cannot watch an hour tv show - but its been 23 fucking years at that level for Jeff, with full on flu - so that's the only way Jeff can describe what happened to him in Sept 1996 0:23:00 Jeff has the same flu symptoms, some more severe, as 23 years ago - that is Jeff's reality - Jeff describes his symptoms as a constant orchestra 0:24:00 Jeff used to have good days and bad days, but now he has perhaps a few good hours each week, and the rest is bad 0:25:00 Jeff's had 3 GPs, plus lots of specialists -- but the GP at that time - 1996, pulled out a list that said 'Chronic Fatigue Syndrome' - Jeff did not have constant sore throats, but had all the other symptoms, but the doctor said that Jeff could not possibly have CFS if he did not have a sore throat 0:26:00 The doctor said Jeff had 'nerves' and some people just aren't as emotionally strong as others, and life is hard, and so what you need is a psychotherapist and a relaxation class 0:27:00 Jeff was so sick and desperate and grabbing at straws, so Jeff did therapy and relaxation classes - while they didn't help his physical health, they did help in other ways 0:28:00 But not one of them has moved his illness 1 per cent - Jeff's doctor retired, and his new GP took Jeff more seriously and sent Jeff for other testing - but there was always the overarching theory that the problem was Jeff: he was gay, overly sensitive 0:29:00 Jeff has learned through this health journey everyone wants to put you in a box - but if people had of paid attention to 'chronic fatigue syndrome' instead of calling it 'yuppie flu', he wouldn't have lost a quarter century of his life - Scott says that many people with ME (myalgic encephalomyelitis) have it develop from a flu that never went away 0:30:00 The COVID patients who do not recover are showing ME symptoms - however, it is less likely their symptoms will be dismissed with psychological bullshit because of the global onset - Jeff says from the SARS pandemic we learned that 17% of patients could not return to work at all, and 87% of not fully recovered 0:31:00 With milloins infected with COVID, without a doubt many more people will be sick with ME - COVID could be the best thing to happen to ME - there are already about 600,000 Canadians with ME 0:32:00 But there are many more people who are not diagnosed - Jeff remembers a woman from his childhood who was sick in bed for 30 years, and nobody knew why, but the narrative was that it was because she was a woman 0:33:00 Jeff feels for how this woman must have been so misunderstood for all those years - while therapy helped Jeff with his emotional life, it did nothing for his physical symptoms 0:34:00 Therapy does not stop Epstein Barr Virus from replicating in your body - even Jeff and his husband thought maybe Jeff was just really depressed but didn't know it - but every sign indicated jeff wasn't depressed - he enjoyed activities, his friends, he was optimistic - he was sick in bed and sad, sad because he was sick and in bed, not because he was sad 0:35:00 One of the elements of ME is bowel problems and IBS - in the late 2000s Jeff started to experience IBS symptoms again - but with ME, because it is multi-system, the habit is to attribute any symptom to ME, and to not tell you doctor because of the 'eye roll', as in 'here he is again' 0:36:00 Jeff got to the point where he was thinking, 'no one can help me, I don't want to be looked at as crazy, so he didn't mention it to his doctor - Jeff ignored the symptoms until he couldn't ignore them anymore - his doctor sent him for a colonscopy and they found something 0:37:00 Jeff was diagnosed with a rectal tumour and he had to have a bowel resection operation - basically they removed 95% of his rectum and he was on an ostomy bag for 6 months, but then had a 'reversal' operation and doesn't have the ostomy bag anymore - but the tumour only impacted about 20-30% as much as the ME 0:38:00 But as soon as he got that diagnosis, it was like he was in another world, another twilight zone, another life because he received help, understanding, empathy, support - it was strange compared to ME health care - Jeff really needed the reversal surgery because of the time and energy it takes to use the ostomy bag, clean, change while standing up 0:39:00 Jeff has POTS as well, so standing is a real challenge - he had a nurse for a while for the ostomy bag, but the real problem was the ME, and there was no help for that - Scott says there are 2 health systems: if you have cancer, or HIV, or a broken leg, you can usually get pretty good care - but if you have ME or something else they don't know about, you get pretty shitty care 0:40:00 When they don't have a pill or an operation, they says its in your head and they think they've cured you, they just don't want to tell somebody "I don't know' - if somebody had of said that to Jeff, his life would have changed - he wouldn't have spent 25 years beating himself up as not being good enough, not trying hard enough - Scott asks Jeff when he knew he was being gaslighted? 0:41:00 Jeff says when he saw the 'chronic fatigue syndrome' list of symptoms and he had them all except one, he figured he had it and that was in the back of his mind, but he always responded to whatever the doctors said was the problem - but the epiphany was around 2015-16 when Jeff went to Stanford chronic fatigue syndrome clinic (aka ME) in California - so 20 years after the flu started 0:42:00 When Jeff got to Stanford he first saw a nurse practitioner who had reviewed Jeff's file, the first thing she said was 'I apologize for all the medical abuse you've received from the medical community' 0:43:00 Jeff had 20 years of grief that he never expressed, because he was never told medicine made a mistake - Jeff hugged her because he didn't know what else to do - it changed his life hearing that - Jeff paid for an expensive panel of blood work - the results showed Epstain Barr Virus higher than anyone they'd ever seen at the clinic 0:44:00 For the first time Jeff forgave himself for not trying hard enough - all those years of struggling to work, only to be remprimanded for not doing well enough - Jeff took a moment to recognize that he did all that even though he was so fucking sick, and sicker today because of it - getting the blood work back showing the infections was validating 0:45:00 The layman's interpretation of what is happening, is that the Epstein Barr Virus (EBV) is replicating every 24 hours, as its been doing for 23 years - the diagnosis all made sense - the nurse started to cry too 0:46:00 Because Jeff was steadily getting worse - and this is something often not talked about, it is the people who are too sick to have a voice, literally too ill to speak 0:47:00 Jeff has periods where talking is so draining, uses so much energy - Jeff did not leave his bed for the previous 4 days, to rest up and sit up for this interview - but Jeff says he knows of so many people who are completely bed bound and cannot communicate, even on the internet - they are still there and breathing, but they don't exist otherwise 0:48:00 Severe ME has been described as like the last days of dying of AIDS or cancer - in and out of consciousness, speak very little, just like ME 0:49:00 Jeff's friend read about the Stanford chronic fatigue syndrome clinic and told him about it - Jeff took the article to his doctor, and the doctor read the article, looked up at Jeff and said 'You have myalgic encephalomyelitis' 0:50:00 At the same time, Jeff was trying to get an appointment at the Environmental Health Clinic at a Toronto hospital - it took 3 months for Jeff's Stanford appointment, but he had to wait 19 months to get the Environmental Health Clinic - the experiences were not similar 0:51:00 Jeff had to forgive himself and the medical community - like MS was called hysterical paralysis before the MRI - and we know that how people with ME are treated by the health care system causes them to kill themselves - there is no treatment, no empathy, no hope 0:52:00 And it was at that time that Jeff started advocacy, he needed to do something, in his own way with own limited abilities - Stanford started Jeff on a mitochondrial cocktail, LDN (low dose naltrexone) and valcyclovir, an antiviral 0:53:00 Jeff was only on LDN for 2 months because he was feeling sicker - it was another 3 months be bedbound because of it 0:54:00 Jeff was on the valcyclovir for 9 months, but it took away from his health, not helped - Stanford said that the chances of improving decrease the longer someone has been ill - it cost a lot for Jeff to get treatment: flights and hotels, $1200 for the appointment, another $5000 for the testing - Jeff had to cash in some of his RSPs to pay for it 0:55:00 What the Toront Enironmental Health Clinic was helpful with, was diagnosing POTS - post orthostatic tachycardia syndrome - with a tilt table test 0:56:00 For Jeff, his heart rate goes up over 30 beats a minute when he goes from laying to standing, this is why he's dizzy when he vertical - but there no real treatment for that either 0:57:00 POTS falls under cardiology, and the big thing for POTS in cardiology is exercise, but exercise makes people with ME much sicker - the cardiologist Jeff saw was part of a national board, but they excluded people with POTS and ME, because people with ME can't exercise 0:58:00 So medically marginalized again - Scott says that people who are fairly healthy wouldn't really notice a 5% improvement in their health, but if someone is sick with ME and only has 5 or 10% functioning or quality of life, a 5% improvement is huge 0:59:00 Jeff has maybe one hour a month when he doesn't feel really sick 1:00:00 Jeff feels like his body is stuck in the 'sick' position - and that relates to researcher Robert Phair's theory that people with ME's bodies are stuck in a metabolic trap, a sickness trap 1:01:00 Jeff describes his energy as 12 cents of gas a day - going to the bathroom uses 6 cents - PEM, or post exertional malaise, is the biggest issue with ME 1:02:00 For people with ME, exercise, even walking to the end of the driveway, or lifting groceries, is never going to be good, it puts energy into a deficit, and that causes PEM, an exacerbation of ME symptoms - cognitve and emotional 'effort' can also cause PEM 1:03:00 Jeff has resigned himself that he will never get better - but he thinks understanding of ME will come, and his purpose is to push that forward so that others don't have to lose decades of their lives - Jeff hopes he doesn't get so sick that he needs to be tube fed 1:04:00 Jeff's fascinated about the responses on Facebook when he posts about ME - he's educating a lot of people - having someone at the Canadian Institute for Health Research understand ME can change the world 1:05:00 Jeff has been sitting up for an hour, so the usual crushing fatigue is worse, the room is spinning - this is a lot of effort for Jeff, the equivalent of a 50 mile jog for someone healthy 1:06:00 Scott says he used to think people who did triathlons were so tough, but they have nothing on the people who live with ME - Jeff says the sickest people with ME are the toughest people you'll ever / never meet - and they are trying to help others, even when they are so sick they can't speak - Scott says he's healthier than other people with ME, maybe because of HIV meds 1:07:00 Jeff says that others with ME, who don't have HIV, can't get access to the meds because their doctors will lose their license

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Scott Simpson: 

Counsellor + Patient Advocate + (former) Triathlete

I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.

I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.

Thanks to research and access to medications, HIV is not a problem in my life.

I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.

Counseling / Research

I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here. 

Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.

Patient Advocacy

I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.

I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.

Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.

My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.