Episode 3: Back to the future with polio
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This one is for the kids. Long COVID can affect anyone at any age, but growing up with a chronic illness means you are learning who you are while realising who you will never be. This one is for the epidemic survivors who are still here, still around, even though the disease that changed your life is no longer the hot topic. This one is for the people living with post-polio who were told it was all in their heads. If that sounds familiar, this one is for you too. It’s for all of us. We need to talk to each other.
CN: This episode contains discussions of medical disbelief and trauma.
Texts mentioned in this episode:
(Referenced by Katie Bourdeau): COVID Long-Haulers Canada, Statement from the Chief Public Health Officer of Canada on July 7, 2021, Prevalence of long-term effects in individuals diagnosed with COVID-19: a living systematic review
Van Lier et al: Disease Burden of 32 Infectious Diseases in the Netherlands, 2007-2011
Ruth Bridgen’s thesis: Postpolio syndrome—“We aren't dead yet”
The Office of National Statistics March 2023 report
I would like to thank the British Polio Fellowship for connecting me with Frances and Ruth.
Full transcripts and references are available at www.massivelydisabled.com
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You can follow the show on Instagram and Twitter @massdisabledpod
Hosting, producing, and editing is done by Élaina Gauthier-Mamaril
Music is by Morgan Kluck-Keil
This podcast is made with the support of the Centre for Biomedicine, Self and Society, Usher Institute, at the University of Edinburgh.
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Katie Bourdeau 0:00
My experience talking about COVID and my experience with COVID on the internet is like, I don't know, not a great experience. Like, just I ended up, like, arguing with people and having people be like “Your family experiences kind of, like, out of the norm”. You know, “Sorry that you guys went through so many experiences, like went through so much hardship, but like it's mostly a cold not everyone is going to have these like lingering symptoms”. And I'm always the one with sort of data and statistics being like, well, I don't know, like the Government of Canada says like 56% of people are going to have symptoms that last for 12 weeks or longer, right? That's like more than half and like my family, it's like three out of five, so 60%. That sounds pretty normal to me!
Élaina Gauthier-Mamaril 1:12
Hi! Welcome back to Massively Disabled, a long COVID research podcast. I’m Élaina Gauthier-Mamaril, a disabled philosopher of disability and your guide on this journey. If you’ve just arrived, you’re more than welcome to join us here, but you may want to listen to episodes 1 and 2 first to make sure you pack the right things.
Today, I want to talk about the intergenerational impact of mass disablement. To do that, we’re going to visit Ruth and Frances. Both of them are polio survivors and are living with post-polio syndrome. Although we don’t really talk about it anymore, polio epidemics affected a whole generation and left their marks in our social imaginary and in the history of scientific progress. People like Ruth and Frances have valuable knowledge to share about what it means to “survive the apocalypse” because, for them, history is very much a part of their present.
With us today are also a daughter-father COVID long haulers duo, Katie and Ed Bourdeau. At the top of the episode, we heard from Katie. More than two years after their initial infection, Katie and her father Ed are still living with unresolved symptoms and they know that, factually, a lot of people are in their situation. But knowing that is not the same as feeling supported and seen. I’m hoping Katie and Ed can get something out of meeting Ruth and Frances and that you do too.
First things first: what is polio? Poliomyelitis, or polio for short, is a neurological infection that causes a high fever and results in muscle pain and weakness, what is known as paresis. Some kinds of poliovirus cause paralysis, where muscles are completely immobilised (and causes death if that muscle is your heart). But it is possible to recover from paresis, even if only partially. Many people infected with polio can walk afterwards, at least for a while. However, the UK government estimates that 80% of people affected by polio will develop post-polio syndrome years, and sometimes decades after the initial infection.
Post-polio symptoms include persistent fatigue, muscle weakness, and sleep apnea. Although it is now recognised and listed on the NHS website, it went through its fair share on controversy in the 1980s and 90s:
Frances Quinn 4:06
So you ended up with a group of doctors and several conferences in the United States on post-polio syndrome, what it was called, at that time, the late effects of polio. So they were, but they came up eventually with a name post-polio syndrome and the definition and eventually got it accepted in several places, I think. Til’ the European Federation of neurological societies came out with a paper dated 2006 basically, on this definition as well, based on that work done in the 80s and 90s. But there are people who felt it was, well, if you've been walking with weakened muscles for 60 years it's unsurprising you're feeling like that; it's nothing new, it's not further neurological deterioration. It's just as what you might expect from just having lived with the damage you had when you were initially rehabbed. For for many decades, it's just what happens. And that debate is still going on. Some people want to call it functional neurological deterioration. Some people will want to call it post-polio sequelae, post-polio sequelae; not quite sure how you pronounce the Latin. And it's debatable whether there really is an absolute line you can draw between the late effects of polio, which might be done to… You know, I've walked with a limp for ages. So my back's distorted. So I am going to have further problems. And post-polio syndrome, which is that well, some of my motor neurons have given up the ghost and can no longer support my muscle activity. And that is post-polio syndrome. And it can affect everything, your sleep, your breathing, definitely fatigue. And when we're talking fatigue, we're not talking, just tiredness. But all of these are, as I say, there's no test. And that is the thing that makes conversation with certain clinicians quite a problem. And in particular, neurologists, I'd say they like to be able to understand exactly what's going on. So most of the things that we're talking about are things that the person themselves reports, you know, when I do this, I get fatigued, I can't sleep at night, because I've got all sorts of other things going on, I find that I can't lift things. I used to be able to carry a bag: I can't carry a bag anymore. I used to be able to walk, I used to be able to walk over five miles when I was in my early 20s. I have to be very careful about even walking to the end of my driveway now. And that's not normal ageing. Well, that's the other thing they'd say. It's also when you've got the disability and now you're getting older. “It's just normal ageing”. And that's the sentence you'd get from a GP most often.
Élaina Gauthier-Mamaril 7:08
Why do I want to talk about polio? Well, for one, it deeply affected the UK society and the world. Just in the 20th century, from 1948 to 1955 there were multiple epidemics. Then Jonas Salk and his team developed the first vaccine (using, without consent, a cell line from Henrietta Lacks, an African-American woman). The polio vaccines are highly effective and have successfully rid most of the globe from the virus. However, traces of the virus have been found in the London sewage system and in New York State in 2022 and today, in 2023, polio is still endemic in Afghanistan and Pakistan. The Global Polio Eradication Initiative has less than 2 years to accomplish their goal by the 2025 deadline.
Frances and Ruth both contracted the virus before the vaccine was available, Frances in Northern Ireland and Ruth in the American Midwest before moving to the UK. So, although there are no new cases of polio in the UK to date, people affected by the virus still very much live among us.
The success of biomedical strategies to tackle polio is the second reason why I’m bringing it up in relation to long COVID. In many ways, the trajectory of polio treatments leads to an ideal outcome: the practical eradication of new infections from a debilitating disease. Still, the ultimate goal is set to be reached 70 years after the first vaccine. Even if we account for how much faster the scientific turnaround on new drugs is now, this is still playing the long game. In the meantime, people like Frances and Ruth went on to get married, have children, pursue PhDs, and have full careers. Beyond biomedical strategies to deal with the virus, survivors need support from social and healthcare policies to manage and understand their chronic condition. For example, in mild cases of polio where there is an apparent recovery and children were sent home without any follow-up, lingering uncertainty around post-polio symptoms disrupted people’s lives:
Ruth 9:48
There's a big controversy here. In fact, all of polio is a big controversy because people concentrated on paralysis. And you know, people who did, a few doctors wanted to know about the mild cases to see how the epidemiologists who wanted to see how it was spreading. But there's, it's normally called paralytic polio where it gets into your nervous system and non paralytic, where it just gets into your brain causes of meningitis basically, but never gets into the body. That was the theory. Well, what it turns out is that all polio gets into the body. Brain too. And in fact, my theory is that the milder cases get more of the brain and the body. So it's a slightly different thing going on. And I think the other thing is they get more of the muscle fatigue and the weakness, but nobody has ever worked out what causes the muscle fatigue in polio. So there are two articles about non paralytic polio at the time, in which doctors were looking to see about this spreading business. But they also one of them is the only one who said that when he diagnosed non paralytic polio, you really need to follow up the patient once that got home, because in the hospital, it can look like they're okay, walking, because they're just asked to walk down the corridor. When they get home and have to actually live a life, they find out that their muscles aren't working that well, they get painful, they get weak. And basically, it's muscle fatigue, could be my weakness. He says some of them even get orthopaedic problems, the leg not growing while the thinner leg or whatever, and you know, it's got into the body. But nobody knows this, because they've gone out home and they were mild cases. They were probably kept in hospital for 10 days for meningitis type illness. Yeah, so you could just have a bad illness, and it's mild polio. Or you could I mean, there were other cases. In fact, it was really complicated because some children did have weakness but weren’t that ill, necessarily. In fact, I knew one who, and she would say, you know, “I just slept on the couch for several weeks, because it was easier for my mother to have me downstairs and chant to carry me up. You know, you know, I wasn't paralysed, but I was very weak, and I couldn't get up the stairs to go to the bathroom and stuff like that”. And those cases sometimes never even got recorded.
Élaina Gauthier-Mamaril 12:49
And this is what leads me to think about the concept of “burden of health”. That was a lot. Okay, let's take a break.
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Do you have long COVID? Are you researching long? COVID? Are you a researcher researching long COVID? Having long COVID? Do you have any questions about the podcast? You can contact me at massively disabled@gmail.com. This is Frances again.
Frances Quinn 13:21
It was one of those things, you just have to laugh. So what they wanted to do was look at the burden of neurological diseases. In Norway, I think it was…
Élaina Gauthier-Mamaril 13:31
It was actually a 2016 paper from the Netherlands authored by Van Lier et al.
Frances Quinn 13:36
…and they listed them all. They said there was no burden of health. So if you're, they do this research so they can work out where do where does it come to meet the spend its resources, basically. And it said there was no burden of disease because nobody had a polio infection anymore. Nobody has a polio infection anymore, but many 10s of 1000s of people who need different help from the Health Service who are living with the after effects of polio who need specialist care, and that's a burden on the health service. So it was absolutely staggering to see it.
Élaina Gauthier-Mamaril 14:13
“Burden of health”, sometimes called “burden of disease”, refers to the measurable cost of a disease in economic terms and in “years of life lost”. Knowing how many new cases are documented in a given region and the severity and length of symptoms can inform policy that affects what kind of healthcare services are offered and if specific populations need to be targeted. So far so good, right? The next bit is where it gets tricky, so bear with me.
The overall burden of disease is calculated using a metric called the disability-adjusted life year or DALY. One DALY unit represents the sum of the estimated years of life lost (or YLLs) compared to the life-expectancy of the country you live in and the years of healthy life “lost” to disability (or YLDs). Are those enough acronyms for you? What this means is that different diseases are given different DALY ratings. The higher the number, the higher the estimated toll of the disease. In the 2016 paper by van Alies et al. that Frances mentioned, polio was given a DALY of 0. Now, I could go down a rabbit hole criticising DALYs (for example, did you notice that only the “bad” effects of disability are quantified according to this metric?), but I’m going to try and stay on point.
If we are going to use measurements like DALYs to inform policy decisions, then we need to pay attention to the 0s, that is, to the diseases deemed to carry no burden of health. The van Alies paper is very clear that it is focusing on new cases in the Netherlands during a specific time period. So, it is accurate to say that there were no new cases of polio within those parameters. But, as Frances points out, there was no mention of post-polio syndrome or of the existing population that require health services linked to a prior polio infection. Future spending and programs are being planned without these people in mind.
My point here is not that we should indiscriminately give the same amount of money to all types of treatment. What I’m hoping is coming across is that we need to make sure that the current realities of living with chronic illnesses like post-polio, like long COVID, are taken into account when we are planning the next stages of public health policy and of health care delivery. I propose that we crip the notion of “burden of health” or “burden of disease” by listening to the needs of chronically ill people, even if those needs seem mundane and unglamorous. Of course we should develop vaccines and take preventative measures. But chronically disabled people live now, not in an alternate past where we never got ill nor in a future that has erased us from the narrative. We need social healing strategies beyond the scope of future-oriented biomedicine.
Frances Quinn 17:40
I think the thing that we haven't touched on is the impact of the trauma of that type of condition. So when the viral infection that you have from polio, is extremely painful. Now people who remember it, thankfully have no memory of it at all. And if you were treated in the 1950s, which I was, you were isolated from your family for a very long time. And when I talked about ending up in tears with a GP, it was because of that trauma, which quite frankly, has never really been addressed, I've only really touched on myself on trying to deal with those issues. It can affect different people in different ways. But certainly it's affected conversations with clinicians, because I do find without a conscious thought, in my head, it's not like, oh, gosh, I'm remembering something horrible. It's a well of emotion that comes up that you don't understand. And it's very similar to what people describe and PTSD. And that as yet has not even begun to really be looked at that you've been through something really horrible, extremely painful disrupted your entire life. It's disrupted your family. And while you get the more clinical bodily help, that psychological help you don't get to deal with your trauma. And I think there must be so many people with COVID, for example, who, after people who've ended up in intensive care for some ferocious length of time, that's going to reemerge, because for me, I would say that didn't really reemerge until my 40s. And I remember seeing an email from a daughter of a member who was 90 years old who was starting to ask these questions about what happened and why did I get polio? What happened? So she was asking for her father. So it can emerge quite late on and we probably haven't really got to that stage yet with COVID. We still haven't really got to the stage of it being treated with post-polio syndrome or polio.
Élaina Gauthier-Mamaril 20:01
We can only imagine futures based on our experience of the present. And, in the present, we have intergenerational disability narratives unfolding. As of March 2023, the ONS estimates that 23 000 children aged 2 to 11 in the UK have LC symptoms, and so do 39 000 teens between 12 and 16 years old. That’s 62 000 kids who have their whole lives ahead of them. I hope we can talk about that, as a society, and make it easier for newly disabled people to form a community with disabled elders, because we have an idea of what you’re going through. Oh, I see Frances has something to say:
Frances Quinn 20:49
That's right. I think I mentioned that recently, I have used meditation throughout my life when I've tried to get around these issues or or understand them, actually. And recently, I did a six week course on “Flourishing as you age”. And one part of that they were talking about the grief that can come with ageing, because you're losing things, you're losing ability, you're maybe you lose, you've maybe lost friends and family, but there are, there are losses, you've lost contact. And I think it struck me then that, yes, there's a grief, when you have a disability that's with you forever, because you've lost the person you could have been for something when you have it as a child as well, I think that is a very different difficult thing. I have no memory of being any other way. But I think I'm realising that there is an element of grief. With that, that lost that potential. And maybe I have two sisters relatively close in age. So I've had an example in front of me all my life of how I could have been. And that's an interesting situation to be in. So those psychological aspects are probably maybe even more important to treat, because they can stop you doing the right thing to look after your condition. And they can stop you engaging properly with the rest of the world.
Élaina Gauthier-Mamaril 22:27
This grief is not only something the sick person bears as an individual, but it shapes whole families. And talking about that feels extremely vulnerable. Which is why it's so important for disabled people to talk to each other. Here's the Ruth again:
Ruth 22:44
I didn't realise because I'd have, but because I turned up at people's houses in a wheelchair – Although this is something I would like to talk about, this is relationships with people a bit – You know, they were happy to talk. And they were happy that it wasn't someone who didn't understand anything. I did, but the stories people told me. I mean, I had two supervisors, one was very nice. And one was not very nice. One comment I'll remember forever was, you know, “You have gold here”, she said. People were very poetic, about their early life, getting polio and things, really beautiful stories. And the other thing that I hadn't realised I would be so interested in but, I mean, I haven't, because I haven't dealt with people's, like, as a psychologist ever. But the generational relationships I found really fascinating. And it made me think you know, from parent to child to their child. Because I was hearing about three generations, they would talk about their parents when they got polio, then they would, like, talk about having children. And I then met some children. Specifically, academics, in my work, because people would sometimes come to my talks at a conference because they had a mother who had polio.
Élaina Gauthier-Mamaril 24:33
Ruth’s research also shows that it was often very difficult for polio survivors and their families to talk about how the disease affected them. My hope is that this will not be the case with the consequences of COVID-19. Whether you are 12 or 77, you are not alone. You don’t have to reinvent the wheel.
I’m going to let Ed Bourdeau close us off. There are many Eds and Katies in the world, many fathers and daughters navigating illness together, but we don’t always get to hear from them, and we should. So, add this to your LC diaries:
Ed Bourdeau 25:12
My doctor, who is a gastroenterologist and internist, has, after many, many tests come up with a diagnosis of… I gotta read it, because it's primary sclerosing cholangitis colitis, which is a liver disease. And ultimately, you know, it's a degenerative liver disease that probably takes like 20 years and then your liver kind of needs to be replaced or you die. I have a respirologist, who's diagnosed me with an interstitial lung disease. And those are the two main primary caregivers I have. The symptoms are virtually none for the liver. Like he said, If I didn't have COVID, and they didn't weren't doing all these tests anyway, and blood tests he would have never known. But my breathing was initially a lot of scarring in my lungs post COVID. But that seems to have backed off to roughly half as bad as it was and seems to be pretty stable. So that's good news. Although I still have, my primary symptom is a lot of coughing up. Not from my lungs, but more from my bronchial tubes. Nobody seems to know why that's happening, why it's so intense. What they have done is said it's not really damaging anything. So they're not all that concerned, although it's my primary problem, like, for three years, you know, coughing every two minutes or every minute or whatever, and having coughing fits 20 times a day is not very much fun. And then beyond that, there's a whole raft of like bizarro symptoms that could be again, related to age but could not be as well. Like, I've had some gallbladder attacks I've had my joint and muscle stiffness, especially joints that are never been sore, my knees, my hips, my shoulders, my ankles, everything sore and has been for since I've had COVID to the point where like, sometimes I would have a muscle cramp undergrad muscle cramps ever. But now I would have like strange muscle cramps in the middle of the night where my calf and my shin would take turns, cramping, that was no fun because your calf cramps and then you automatically flip your foot the other way and then then your shin cramps, and then they're both cramped, and then you get nothing you can do other than wait it out. I don't know anything else you can think of that or, Katie, that you know about my sort of raft of symptoms, I mean, chronic kind of low energy compared to where I was before, when I was like 61 or whatever, you know, exercising is almost beyond the possibility of doing anything other than going for a walk once in a while. I try and use my dog as my exercise machine. But you know, nothing like going for a jog or anything like that is like beyond thinking about right now. Anyway, that's about it from my symptom point of view and the symptoms seem to be lingering and not getting any better. And I don't know whether it's the doctors as a group just can't seem to figure out what is linking them or whether they're not interested in figuring out what's linking them. But it seems pretty suspicious to me that it's all of these things have turned up post COVID.
Élaina Gauthier-Mamaril 28:59
Massively Disabled is hosted, written and produced by me, Élaina Gauthier-Mamaril. Music is by Morgan Kluck-Keil. You can follow the podcast on Twitter and Instagram @massdisabledpod and write to us at massively disabled@gmail.com This podcast is made possible with the support of the Centre for Biomedicine, Self and Society, Usher Institute, at the University of Edinburgh.
Katie Bourdeau 29:27
We had it so early on in the pandemic, like, we were amongst the first 3% of Canadians to get it. So our experience was just so bad and it was, like, so hard to get people to, I mean, believe that like “Hey, you don't want to get this; it's not fun, you know?”
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