83 - Ryan Prior - Journalist, Producer, Author & Advocate

Jackie Baxter  
Hello, and welcome to this episode of the long COVID Podcast. I am delighted to welcome my guest tonight, Ryan Pryor, journalist, producer, author, advocate, and many other equally impressive things. Ryan's book, "the long haul" came out, I think it was the end of last year. So there are themes running through that that will be interesting for discussion, as well as all the many tangents I'm sure we're going to head off on. So a very warm welcome to the podcast.

Ryan Prior  
Thank you so much for being here. It's an honor to talk with you. 

Jackie Baxter  
To start with, would you mind just answering a very boring question and just saying a little bit more about yourself and your story.

Ryan Prior  
So I'm Ryan Prior. I'm  a journalist, and author writing for a lot of different publications over the past 10 years or so. And part of my experience is having a chronic illness, myalgic encephalomyelitis, chronic fatigue syndrome. And I'd written a number of stories about that in my job at CNN. And prior to joining CNN, I had worked as a documentary filmmaker making a film called Forgotten Plague, which was about this disease. Years ago, it was less than two headlines - MECFS - and one of my goals was to increase awareness. And so in addition to a lot of my other work, covering the news, which was covering the 2016 election for CNN was one of the interesting highlights, I was always writing me stories about science and patient led activism to change this disease, but really changing a lot of different diseases. 

So when the when the pandemic started, I was aware that there was going to be a large surge of of new MECFS-type cases, before there is this word, the long COVID, or long hauler. I mean, we all knew that the post viral syndromes, for all of us who've been following in the past and advocating for these diseases, it was pretty alarming. So I was keen to try to put my journalistic skills to use and cover the topic in the best way possible.

Jackie Baxter  
Yeah, it's interesting going back to sort of just over three years ago now, and I was in a very privileged position of having never experienced illness, anything worse, really than a cold to that point. And, you know, I think, when the pandemic sort of started, sort of rumbling away in the news, and then sort of really started getting going, I think we all had this probably sense of impending doom. But like, you were saying, You must have had this idea of what the longer term implications could, or probably would be in a way that someone like myself just didn't.

Ryan Prior  
Yeah, and there was like a really profound sense of dread. I mean, there was a sense of dread, I think that all of us felt, just not knowing if everyone on planet was gonna die, that was the most acute version of that dread. But knowing that about 10% of people who get this virus are going to experience some version of months or years long consequences. What that feeling in March, April, May of 2020, was like a deep-seated dread that there was not a - I didn't have words to describe this. And I was trying to explain to some of my editors at CNN that this was certainly going to happen. 

And I believed that I was not going to be able to report about it, as a journalist until a peer reviewed paper appeared, showing that people with COVID had developed MECFS. And that it was going to take at least six months for a cohort of patients to reach that point where they received the diagnosis. And it was going to take a number of months after that until the paper could actually come out. So I was under the belief that I was not going to be able to write anything about this until probably December of 2020, although in March of 2020, intuitively, it was obvious that this was going to happen. 

So it was incredibly impressive to me when Ed Yong wrote a piece for The Atlantic that came out in early June of 2020, using this phrase "long haulers" which I had never heard before, and talking about the patient led research collaborative who had written published a paper about long haulers. And then he had managed, of course, to write the story and edit it by early June. So I kind of felt like he had scooped me from a journalistic standpoint, I was jealous that he had maneuvered so quickly into the story. And I was sort of kind of sitting on my hands like thinking about it, but just hadn't located. 

I was doing a lot of COVID related stories. Some of it will be the extroverts guide to social distance. A lot of what I was reading was like social distancing type stories, like how to stay happy while you're quarantining, that was on the health and wellness and science beat and I was doing some stories that were about the underlying science of COVID. But that was a particularly impressive feat to get that get that through. 

I was not able to write my first story worry about COVID long haulers until probably July or so. But I told my editors I wanted to interview people who had experienced COVID and sort of "mysteriously" weren't getting better, like two months later, like, in order to get this pushed through - make it more like a human centered story and based on the anecdotes of people who gotten sick, but it was sort of part of my master plan, of course, to write as many possible stories, I think it probably wrote six or seven stories about long haulers in 2020. And basically, I was jumping up and down with my hair on fire, trying to say that this needed to get talked about and, yeah, did the best I could. And that led into doing this book.

Jackie Baxter  
Yeah, you're sort of I was gonna say unique, it's obviously not completely unique, because there were many, many, many people ill with not long COVID, but, you know, MECFS, or other chronic illnesses beforehand. But this kind of foresight, I guess. And thinking back, you said that your first piece was kind of July. And at that point, I think for me, I hadn't really heard the term long COVID by then. And I don't know if that's just because I was kind of in a bit of a bubble of thinking it was only me at that point. Because I think that's what we'll do. Or certainly, that's what I've heard a lot of other people say, you know, they thought it was just them. And it wasn't until it started hitting the news in a bigger way that people went, Oh, it's not just me, oh, there's 1000s of these people, which is both lovely, for the sort of solidarity thing, but also kind of terrifying that this is such a big thing. But you know, should we have known?

Ryan Prior  
it would have been nice if people would have had a framework for thinking about the post viral syndromes, and particularly their disabling nature. But the more positive spin I would get on it is it was just uniquely impressive, in human history, really, that knowledge about post viral syndrome could increase so fast among so many people. And then it would be driven by the so-called amateurs, just like citizen scientists. People who were not part of the formal research establishment. And it was really it was very human driven, very communal driven, in developing the awareness of it, and the people were pitching in to do new science in a global emergency, and rethinking what regular people's relationship to science is in the first place. So that's been a uniquely inspiring story. 

Although I think that most people in the long covid movement feel that things have not gone fast enough, because we have vaccines, and we have antiviral drugs authorized to treat acute COVID. And people would prefer that long COVID be cured, and that all people would know exactly what it is. And this will be all further along than it currently is. But the rapidity with which innovation that's occurred around post viral illnesses in the last three years, it's been astounding for people who've been recovering, reading about and aware of the sort of lack of progress the last few decades. So we basically experienced a 10x increase in the speed of scientific process, you know?

Jackie Baxter  
Yeah, I mean, I think that's something that definitely kind of opened my eyes to is, I think, Oh, I have Long COVID. And this is completely awful. And why is it not better now? Why are they not working harder? Why have they not done that? You know, why have they not done this? Why does research take so long? And as I've looked more and more into Long COVID, and, you know, what came before, you know, what's been around for, you know, decades and decades. And it's what I then realize, Oh, my goodness, a lot has happened very fast. You know, which is obviously a very good thing. But, you know, it's almost like people like yourself who have been ill since long before. I feel like it's almost this kind of, well, why is it happened now? But obviously, it's good that it has happened now. I'm not sure if I explained that very well....

Ryan Prior  
Yeah. It always has happened. I think it is the moral of the story that people have always gotten viruses and people have always developed these complex, invisible, hard to define illnesses that certainly do last for decades. And so people will think there's Oh, this, you know, the complex, strange health issue that I happen to have, so that it becomes a isolating experience all unto itself. 

And what's interesting about long COVID is it's the same physiological human experience, of a post viral syndrome, but it's the number of people all experiencing it all at the same time. So everybody having the exact same start date of March or April or later of 2020. And then being able to share about it on social media. So the being able to connect with other patients in real time, all of whom have had exactly the same starting point. So the, for lack of a better word of this mass of data that occurs and people sharing on Facebook or Twitter or any other kind of online platform, you just never had that same rallying effect around a specific type of identity. 

So that has profound implications for the future of patient led research and a whole bunch of different fields and basically, for every disease, and really, for every activist movement in areas that don't involve diseases, that showcasing this process by which people build the community, and then initiate formal research themselves, is very exciting. 

And I'll mentioned that just a couple other books that have come out that are separate from my book that "We the scientists", which is a book by Wall Street Journal reporter, Amy Marcus, that talks about a rare disease. And it's the same process of families meeting each other online. Realizing the status quo is not cutting it, and the standard of their care is not going to save their kids lives. And so the patients and families and caregivers and anyone associated with with this disease has to partner with scientists and force the establishment to move forward, or else are their kids going to die. 

That happens in a lot of different fields. And so long COVID is important because it illustrates a set of principles that can be repeated better in a bunch a bunch of different areas. 

And I'll just mentioned another friend, Dr. David Fajganbaum, who's a professor at University of Pennsylvania and he is a scientist and a researcher in a patient who has a disease, a rare autoimmune disease called castleman disease, and I recommend his book called "chasing my cure - a doctor's journey to turn hope into action." And he figures out a way to repurpose a drug, and ultimately saved his own life. And then now he's running clinical trials for that drug to test it in a lot of other patients with castleman disease. And then he's leading a larger initiative through the Clinton Global Initiative to think about drug repurposing for all diseases. 

And the reason I mentioned David, in particular, is because he talks about this idea that you mentioned earlier, where patients feel that science should solve their disease, that if we're so advanced in the 21st century, then didn't someone already figured this out? How could it be that I have a diagnosis, and there is not a drug to treat it? You know, woe is me. And there's a little bit of a victim mindset that comes up that - How come an advanced society didn't figure this out? 

And David talks about it as this like Santa Claus syndrome, where like, you think that some magical person is going to come down and chimney and deliver presents and and that the present will be the drug that saves your life. But for him as both a physician and a scientist, and a patient dying of the disease, that he knows that there is no Santa Claus. He, therefore, has to become the Santa Claus in his own story, and invent, you know, manufacture, luck, you know, magically create this new treatment, knowing that no one else can or will. 

And that's part of the magic, why he's embraced this really important concept of drug repurposing, knowing that a lot of the drugs that will save lives or will treat existing conditions like MECFS, or long COVID, have actually been already been approved and are already sitting on pharmacy shelves. And the drug that saved his life was literally a mile away. He had to do the research to figure out that this this compound was going to work at the molecular level for what his condition was, but it was already been in use for other conditions. 

So for long COVID, I really believe that the set of treatments that are going to treat or cure this condition may already exist and may already be approved, and may already be at a pharmacy, around the block. But it's the patients who have to - they don't have to, but they have the opportunity to, because we're being forced to innovate and pioneer ourselves. And I don't think of that as a negative thing, that's just science proceeds because of urgency. And another way of saying that is necessity is the mother of invention. And so patients are the ones who want it the most and therefore are going to move things faster, about 10 times faster than formal research has the capacity to

Jackie Baxter  
yes, definitely because we have all the motivation in the world to try to move things forward and work these things out. And again, it's kind of opened my eyes to it but you know, people with long COVID and with other chronic conditions as well because it's not just about long COVID is it - it's, you know, all of these people stretch such a wide kind of amount of different occupations. And, you know, they just cross so many boundaries. I'm a musician speaking to yourself who's a journalist, I've spoken to researchers and doctors who also have long COVID themselves. So we have the people and the knowledge. 

And it ties into this thing that I've kind of realized, since this experience, which is how much our productivity is kind of tied to our self worth, which is something that I hadn't really realized, until suddenly I wasn't able to do things, and I felt completely worthless. So it's almost like finding a way to use those people and use their expertise, and their knowledge and their experiences and everything that they've been through, but in a way that works for them, to pull all of this together into this kind of way that can help people. And I love that patients in research, you know, the patients are just as important as the researchers. And actually, some of the patients are also researchers. And it's this kind of fascinating kind of bringing together of people, isn't it?

Ryan Prior  
This brings up another important point. And this is one way that I'm working to try to change the way that the science-writing profession operates in the first place is that, if you're a journalist or writer, the goal is to reach out to an expert who has just published a peer-reviewed paper. And that person probably has an MD or a PhD after their name, you go talk to the expert to get the story. And then you're gonna go interview patients, and the patients then get tacked on as anecdotes, or they are color to help humanize the thing that the smart person, the expert, the doctor, has published, because they are the person in society who's has the ability to create wisdom or create knowledge. They are the Santa Claus in this metaphor. 

And that it's important to push back on in the process of writing this piece for Open Notebook, which is a organization that caters toward science writers and teaching them best practices about how to do our jobs better. And the idea is, how do we identify a patient expert? How do we elevate patients in our storytelling, so that they're not just anecdotes, they're not just stories that we just tack on out of pity or charity, or just to kind of part of the narrative, but it's not the actual lead of the story. 

And then identifying these characters of so-called expectations, and historically I've called these, E-patients, which is an engaged or empowered patient, so it's a patient innovator, it's a person who has the lived experience of the condition. But how do you understand that the next in the spectrum of which lived experience becomes a form of actual expertise in itself that manifests in this patient led research collaborative, which I'm sure you've talked to, and who are core characters in the book, a lot of the members of it have a formal training in some other area which - data or research or public policy, so they already have a professional lens for viewing the world that they can then filter their patient experience through. So they already are an expert in something and they're an expert, who then became a patient and other they really are a patient expert. And those types of people are valuable for far more than just their description of their symptoms. 

And reporters will make this mistake - they call the patient on the phone and say, Tell me about the worst day, how bad, blah, blah, blah. And they really want to mine like the subjective experience of the illness whereas like, Hannah Davis and Fiona Lowenstein and Lisa McCorkel are really good examples of people who are a journalist or data scientist or a public policy researcher. So, they are not someone that journalists should just interview just to, like hear about symptoms. They are experts in themselves who have a specific role in pioneering research, not in the way that an MD or PhD would, but probably have more validity as an interview subject, more validity as experts because they have lived experience tacked on with their professional experience. 

That narrative concept, I think, is something that journalists should do a lot better. And I'll speak on behalf of my profession writ large, that there's a lot of journalists who do not do a good job. And that I'm sorry for patients listening to this who've been interviewed by journalists and felt kind of exploited or felt dirty or felt like there's a sort of disaster-porn aspect of coverage where people are seen as, you know, to illustrate the horror of long COVID, but aren't necessarily depicted as dignified human beings in themselves. And I think that can be a problem. What patients tell me about what their experience is talking to journalists and knowing a lot of journalists, I know that not all journalists fully value that patient experience.

Jackie Baxter  
Yeah, definitely. And this idea that, you know, patients are people, as well, you know, I think a lot of people sort of complain about being a statistic or a number rather than a person. I've certainly heard that. But it's almost like this - this is the other side of that, where you obviously are very much your experiences, but you know, you're a person as well as the kind of horror you've lived through. 

And I think what you were saying about Fiona, and Hannah, and Lisa, and the whole patient led research group, you know, these people have both sides of the coin. They have that lived experience, obviously, from what they have experienced. But also they have this professional knowledge that is very relevant to research and to what they're wanting to achieve. And it's absolutely amazing what they've managed to do.

Ryan Prior  
And then another organisation - long Covid Physio. There's people who are actual medical providers who have long COVID. And I think it's totally relevant to say that like, being a physical therapist, or being a doctor, plus having long COVID, also is a way to forge a much better form of knowledge and just being a doctor by itself or being a patient by itself. 

And I feel like it's not a complete interview for me unless I mentioned Aristotle at some point. So I want to talk about Aristotle's a great philosopher who spends a lot of time talking about expertise. And expertise for him is - what that really means is practical wisdom. And so wisdom isn't useful if it's not being applied. And the person who knows a certain esoteric topic, but isn't actually using it day to day, therefore, it's not wise. And so he uses this word which means the wise person. And what is the wise person, they ask this question, the wise person is the person who does the thing the way a wise person does it, which means that you cannot be truly knowledgeable unless you're actively practicing what the idea is. 

And so when patients are actively practicing the idea of healing, basically 24/7, they are a living experiment. And that experience is elevated into wisdom. And I don't think that that's in any way like me stepping down and sort of like, trying to make people feel good just for the sake of me breathing hot air and like, sort of inflating patient's egos and like saying, like you matter. But I do think, at the deepest philosophical level, that is what knowledge is. And so I'll keep beating that drum and I'll quote, as many philosophers to backup my argument. But I do think that that's indicative of the nature of science itself. 

And we've moved into a period in the last 100 years or so where science has become more and more specialized, and more and more the province of a specific set of elite people who've cultivated that knowledge. And even 100 years ago, this idea of citizen science was a bit more mainstream. And I think, the 21st century mindset in which all of us has access to all the data that the sum total of what knowledge at the end of the is created. There's ways of thinking about this intersection between democracy and science, and then which we create a renaissance of what citizen science means. 

Jackie Baxter  
Yeah, 

Ryan Prior  
this is sort of a having spent the last couple years, or really the last maybe 10 years, thinking about these issues. Obviously recommend everybody read my book, the long haul. But Amy Marcus, and her book, we, the scientists about citizen science, develops a lot of these same principles. And this is a lot of what I will be attempting to write about in my new role as working for a think tank. And I'll be a columnist for Psychology Today, writing a column called Patient Revolution - dispatches from the frontlines of science and democracy. 

And I think this really is the frontlines of science and democracy and the patient led research collaborative certainly illustrates that. And I think I'll be covering stories about people who are doing similar things with ALS, or with as I mentioned, castleman disease, I'll be doing this with disability rights. When we think think about disability rights. We all, by virtue of being born, we have access to human rights, and you know, several major categories of human and civil rights, women's rights, gay rights, disability rights, and so anybody who has a disease - disabling disease, we operate within the framework of that person has inherent dignity as a human being. So operating in the Disability Rights Framework that each person who has a disability has a right to life, liberty and the pursuit of happiness. Yes, I think that that'll be a lot of the the ongoing project for me as a journalist to expand on my experience so far and to try to pioneer new frontiers in these areas. 

But I think that what we're talking about is like a little bit of a shift in what, you know, what it means to be human, what it means to be a scientist, what it means to be a member of a functioning democracy. And how do we design institutions that are most responsive to human need, and most able to harness expertise, most able to understand what expertise is in the first place. 

So the person who is living in the midst of a some sort of policy failure, and that could be a lot of things beyond just disability, a lot of things beyond just healthcare, or having a disease. But the person who is going through the problem is the person that we will be listening to. So how do we figure out how to get what's at the grassroots, the direct patient experience in this case, and then formalizing that at the highest level of policymaking and delivering that message to elected officials, or to institutions - national health service or similar types of things that can filter on down to changing the structure of how healthcare is delivered in the first place.

Jackie Baxter  
Yeah, definitely. I don't know who actually said it, I'm sure you probably will, but the sort of "Nothing about us, without us", quote totally comes in, doesn't it? And it's, you know, before I had had the experiences I've had over the last couple of years, and got a bit more involved in speaking to medical people and researchers and people involved in that kind of area. And this idea that patients' involvement in research was even a thing, let alone important. 

And now I'm kind of like, well, of course, you would have your patients involved in your research, why wouldn't you? But you know, two or three years ago, it would have been a completely alien concept to me. So, you know, I can kind of see my mindset over that changing over the last couple of years. And I guess one of my great hopes, is that, you know, a silver lining of all of this would be a kind of change, you know, a new way of seeing that, you know, where it is much more valued to have had those experiences.

Ryan Prior  
I think that that should be a takeaway for all of us from this pandemic moment, about how we ought to see ourselves as a society. And not to say that that is or is not happening, and I am a idealist or an optimist, maybe to my detriment, but I'll never not see the world through a more hopeful lens. And so I think, whatever our perception is, of whether these principles are being put into effect, we should never stopped striving to be the change, and to be the ones who put these ideas into effect, and to know that it does matter, it is possible. And there's heroes among us who can and will do this. 

And so a lot of my role as a storyteller, and as a journalist is really just trying to find those people and continue writing about them or producing, whether that be a documentary, television, maybe podcasts in the future, or maybe future books or articles I'll write. Those human stories that are at the core of how we change policy, and my mission statement in life is to write stories that change the world, but I need to have characters to write about who are doing those things.

Jackie Baxter  
Yeah, cos I guess in the end of the day, it's about people, and trying to make things better for people? And, you know, that has to start with one or two, but you want it to kind of spiral out into being everybody.

Ryan Prior  
There's this idea that we - I talk about this a lot-  patient centered healthcare. And to me, and I'm maybe a little bit biased, but I think that in this case, my bias is a good thing. In what world would healthcare not be patient centered? The whole point of the industry is because people got sick, and they want to get better. And if you're not patient centered, then you're inherently not doing what's the function of that field is created for. 

And there's mixed incentives because obviously, if it's not patient centered, then what is it? You know, it could be insurance centered, it could be big pharma centered, which a lot of times it's centered around, what type of drug will make the most money, not about like what's actually going to make the most number of people healthier. So there's a lot of wrong incentives mixed up in healthcare systems around the world, but the core guiding light I think for all of us who are involved in some some version of innovation or healthcare design, is designing around the end user and the end user is, of course, the patient. And there's no point in doing this at all, if it's not like making people better - it should go without saying, but it is sort of, in some ways, a radical thing to be preaching.

Jackie Baxter  
Yeah, I mean, like healthcare literally has one job, right - is to make people better. Yeah, like you say, it should be a bit of a no brainer.

Ryan Prior  
Oh, it's profitable to make people better, unfortunately. But I do think that there's ways of getting economic incentives aligned with that process trying to get people get better.

Jackie Baxter  
Yeah, I'd be really interested to hear your thoughts on being a journalist - language and sort of words are, well important. And you describe the term the chronic fatigue syndrome as sort of garbage pail diagnosis, and that patients don't maybe feel like it accurately represents the sort of reality of the illness. And I was quite interested to kind of compare that to the term long COVID, which is a term that has been made by patients, and as far as I know, seems to be more kind of widely accepted. And I'm wondering what your perspective on that would be, and maybe why you think it is? Or even if you disagree with me? 

Ryan Prior  
Yeah, no, I am extremely in favor of the term long COVID. And especially if in favor the term long hauler. Those are a sea change compared to what we're dealing with before - there was debate about, is it okay to use this term myologic encephalomyelitis? Or is it preferred to use this term chronic fatigue syndrome? It was absolutely a no win situation, there is these two little warring camps. I'll speak very plainly as an advocate was very annoying to have to sit on these conversations when people would talk in circles about the name of the disease. It was a huge waste of time, no one was ever pleased. 

And there has been pretty minimal debate about whether or not long COVID is a good name, I think approval rating is a 90 plus percent. People really like that, everyone agrees, everybody knows what that means. There are some, I would say more academic debates about what is the definition of long COVID? What is post COVID condition. What is long COVID Does it happen at one month, two months, three months, what symptoms are not part of the long COVID-19. Those are interesting, but those are more academic. For writing headlines in the news, Long COVID is obvious that that's the right term to use. And whether it came from patients or whether it came from doctors, maybe the important note here is that the the word long COVID came from experts. And in this case, the experts were patients. But it was a correct word to use. 

And I always quote Shakespeare that the rose by any other name would smell just as sweet. Long COVID by any other name would feel just as bad. But it's so much simpler. And I'll say also that in the book, I say the word long hauler, it's like it's at once like gritty, yet deterministic, gritty, yet poetic. And what one person told me, it sounds like it's something that came from another country music song. And she said it as a negative thing. I think that's the best possible thing about the word long hauler is it's it's folksey, and I think it sticks and MECFS was never ever gonna stick. So big fan of those terms.

Jackie Baxter  
Yeah, I wonder if it's almost this kind of - something that I've noticed, since being ill is this kind of sense of everything being out of control, and isolation, and not knowing what to do and all of those kinds of feelings. And by kind of taking the term long COVID and making it ours, it's that kind of empowerment as well, isn't it? Taking back that little bit of control in this sort of massive of chaos, almost?

Ryan Prior  
in some ways that - I don't say that that's 50% of the battle, because it's not that much of it. But no, it's just a such a strong starting point. What's very important about the word Long COVID is that it has the word COVID in it, which means it has the source of the condition in the name. And people would use myalgic encephalomyelitis and a lot of patients like that, because it sounded scientific. It's not necessarily clear that like inflammation in the brain and the spinal cord was happening, which is encephalomyelitis, that was happening in every single patient. And so, doctors would say like, it's not exactly accurate to call it that. It's not exactly accurate to call it Chronic Fatigue Syndrome either, because fatigue was sort of related, but not necessarily what it actually was, which was post exertional malaise. 

But we can't ever deny the fact that the person got it chronic are complex illness, because they had COVID. And this is an extension of the original virus infection. So it's either a persistent virus or probably some type of immune response. But COVID is the insinuating incident. So it makes all the sense in the world to have the word COVID in the name. And that was not the case with chronic fatigue syndrome, of course, because really, it's long, epstein barr, long h1n1 long, you know, Ebola, insert virus here, which has always been the case, but from a journalistic standpoint, would say, you never want to bury the lead. If you use a term other than long COVID, then you're burying the lead, because the lead is Covid.

Jackie Baxter  
Yeah. So it's almost like the initial insult that caused the stuff that's still going on, you know, caused the long bit of it - is important. Yeah, I've never thought of it that way. I like that.

Ryan Prior  
I have a question for you. What have you learned? And like, what takeaways do you have in terms of where this overall story is going in the next one, two or three years? Where do you think the capacity for people getting better? Or not getting better? Or there being more awareness of this? Do you think that the long COVID situation is moving in a positive direction?

Jackie Baxter  
Oh, that's an interesting question. I feel like I've noticed kind of quite recently, that there has been more in the news. And I don't know if that's just because that is the sort of news that I tend to read, or actually more recently try to avoid. But I feel like there is more awareness on the news. But kind of on the flip side of that, it's almost like, you know, the majority of people are trying to pretend that there is no COVID, that the pandemic is over, and that everything is, you know, quote, unquote, back to normal. And it's almost like this kind of paradox almost. And you've got sort of two very kind of separate camps of the people that are sick or wanting to avoid being sick. And the people that I just like, everything's cool, everything's great. And there seems to be, you know, the divide seems to be getting bigger. And it's very interesting. 

And, you know, I would kind of hope that the two camps would get closer together and would try to find some middle ground and, and it almost feels like the opposite in some ways. You know, there's a lot of research going on. And that's exciting in a lot of ways, and you hope that good will come out of that. But it's gonna take time. And you know, there are people that want things now. And then there are people who have been ill for a much, much, much longer than COVID has even been around, that are sort of maybe pinning hopes on some of that research as well, which makes me really, really hope that things will happen. But yeah, I feel very sort of uncertain about the whole kind of thing

Ryan Prior  
it makes me reflect on the longer I work on these topics as a reporter, the more frequently I have to delve back into medical history to make comparisons to things that have happened before. And thinking about the the overall process by which a lot of different diseases have come into common parlance, or eventually develop treatments. It was always a really bumpy process, and that for the most accepted diseases, with Alzheimer's, or breast cancer, or AIDS, it was very convoluted, in previous decades. This process of figuring out how to develop a biomarker, or how to get a medical specialist society to embrace the fact that this was a problem that first place. 

Post Traumatic Stress Disorder is a really great example that's been fraught with lots of misinformation. Most mental health disorders have a very problematic history. In my own life, more closely - lyme disease, which is caused by ticks, has been the subject of knockdown, drag out wars between patients and the medical establishment. So everywhere you look, there's examples in medical history of things not being done the right way. But overall, there's a longer arc in which science tends to prevail, sometimes more slowly than we would like. And it's oftentimes generational. 

And so that's important here because this is like, I always say, a once in a generation opportunity to rethink the way that we view MECFS, really how we view post viral diseases, or complex, invisible disabilities, which is a long list of diagnoses in PoTS and mast cell and ehlers Danlos Syndrome. 

I really wanted to write a book where there, there was a happy ending, and we tied it up in a nice bow, and the disease was cured. And that was always actually naive. And I should have known that from the start that I was going to get my heart broken, that I was not going to be able to deliver a happy ending. 

However, not to say that breast cancer or Alzheimer's in the public perception have achieved happy endings, because those are just devastating to everyone who experiences them and to the families. But I think that part of this whole exercise is at least recognition of suffering. And it's like, as human beings, how do we reckon with suffering and at least acknowledging it in the form of Alzheimer's walks or, you know, Race for the Cure for breast cancer, a lot, all these different things. More people at least get to the point where they feel like their experience is part of the human experience, although their experience may end up being deeply, horrifically tragic, but they feel like there's part of some communal aspect. 

And that has always happened with most diseases, meaning the diseases in the past. And the movement around HIV AIDS in particular is very noteworthy in political history, because it showed it was really tied into the gay rights movement. And it was like the coming into being of a whole class of people, fighting for struggles and knowing that they were not going to be treated well. And then fighting the power, and really achieving something admirable. And AIDS is dramatically more manageable place than it was 20 or 30 years ago. 

So I don't know, if long COVID will be solved in 1, 2, 3, 5 years. But I think the raising of collective consciousness is in some ways, the happy ending. And that doesn't happen immediately. But historically, there's so many precedents by which it does happen. And my perception is - people ask me like, do you feel like you're making progress? Like, do you feel like your book changed the world? Do you feel like something has happened? And the only answer I can give, which I think is the most truthful answer, is that in a 10 year timeframe, you know, this book, and all of our collective efforts will have been part of a consciousness shift in that way of seeing the world. And yes, we have been successful.

Jackie Baxter  
Yeah, it's the sort of power of people power of patience, and the sort of greater understanding and awareness of things that other people don't necessarily understand. At the moment, I guess. I will make sure that I pop a link to your book in the show notes, because I would definitely recommend reading, for anybody who hasn't done so yet. And yeah, just thank you so much for for joining me. It's been absolutely fascinating. So yeah, thank you so much for giving up your time.

Ryan Prior  
Yeah. It's been great to speak with you and appreciate all of your work and being in the community with you and all of us working together toward a common aim.

Transcribed by https://otter.ai