The Chemical Sensitivity Podcast

Episode 15: Creating Coalitions: ME/CFS & MCS. A Conversation with Emily Lim Rogers.

November 06, 2022 Episode 15
The Chemical Sensitivity Podcast
Episode 15: Creating Coalitions: ME/CFS & MCS. A Conversation with Emily Lim Rogers.
The Chemical Sensitivity Podcast
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In this episode, I’m speaking with Professor Emily Lim Rogers. Emily is a Disability Studies researcher and educator who specializes in Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS. 

She is the Mellon Postdoctoral Fellow in Disability Studies in the Department of American Studies, the Program in Science, Technology, and Society, and the Cogut Institute for the Humanities at Brown University in Providence, Rhode Island, in the U.S. 

In our conversation, Emily explores:

  • The nature of ME/CFS.
  • How people with ME/CFS and MCS struggle to have these illnesses understood and accepted.
  • Online activism as a way for people with chronic illnesses to call for change. 
  • The impacts of capitalism on people with ME/CFS and MCS.
  • How long COVID could potentially lead to more research and understanding about ME/CFS and MCS.

Emily Lim Rogers


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Note: Some time codes will be posted very soon.
 

00:05 Emily Lim Rogers

One of the things that people with ME/CFS say, I heard at a conference when someone said that “no one will care about this until they fear they might get it.”

 

00:18  Aaron Goodman

Welcome to the Chemical Sensitivity Podcast. It's a podcast that amplifies the voices of people with Multiple Chemical Sensitivities, or MCS, also known as Environmental Illness, Chemical Intolerance and Toxicant-Induced Loss of Tolerance or TILT. The podcast also highlights emerging research about the illness.

This episode features a conversation with Professor Emily Lim Rogers. Emily is a disability studies researcher and educator and specialises in my Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or ME/CFS. She is currently the Mellon postdoctoral fellow in Disability Studies in the Department of American Studies, the Program in Science, Technology and Society, and the Cogut Institute for the Humanities at Brown University in Providence, Rhode Island in the U.S.

 Emily is the author of the book “Biomedicine’s Binds: ME/CFS, Patient Activism, and the Work of Debility.” To write the book, Emily conducted an extensive ethnographic study focused on activism among people with ME/CFS. This means she spent a lot of time with folks with the illness, observing them and talking with them about how they create awareness about ME/CFS and insist that more be done for people who are impacted by it. 

The most defining symptom of ME/CFS is known as post-exertional malaise or PEM. Engaging in even mild exercise or mental activities can create significant crashes that can affect a wide range of symptoms in the body. 

The World Health Organisation recognised ME/CFS in 1969. Tt estimates that around the world as many as 24 million people have the condition. In the U.S., it's believed up to 2.5 million people suffer from ME/CFS, according to the Institute of Medicine, which is part of the National Academy of Sciences. Yet most people with ME/CFS haven't been able to get a diagnosis. Many are dismissed by clinicians who often insist that just staying active and doing a bit of exercise could help them but that can make things worse. And the real problem is that doctors are insufficiently trained in order to understand and treat the illness. 

I invited Professor Rogers to speak on the podcast because folks with Multiple Chemical Sensitivity face a lot of the same obstacles as people with ME/CFS. We're often told the illnesses just in our heads were dismissed by clinicians and often by family members and friends. 

In our conversation, I asked Professor Rogers to talk me through some of the ways folks with ME/CFS have struggled to get the illness recognized, how people with ME/CFS and MCS are using social media to press for change, how capitalism creates major pressures for people with chronic illnesses, and how long COVID could ultimately potentially help open up paths for greater understanding about people with ME/CFS and hopefully MCS.

I hope you enjoy the conversation and find it a benefit. We release new episodes twice a month, subscribe for free wherever you get your podcasts, leave a review on Apple Podcasts. It's a great way to help others learn about the podcast. And thanks so much for listening.


Emily Lim Rogers  4:00

So just to give an overview of what ME/CFS is. ME/CFS is a debilitating condition of unknown cause. It has no kind of single biological marker that's distinct that separates it from things like MCS and MCS shares that. Certainly we can't just do a blood test and say you have it or you don't. So that creates the sort of socio-medical doubts surrounding both conditions. Many patient activists who I study have kind of emphasise the specificity of the type of chronic fatigue that people with Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome, what I'll call throughout this podcast ME/CFS. It's a specific symptom of what is called post exertional-malaise. So there's this disproportionate exhaustion that comes amongst other symptoms such as sensory sensitivities or disautonomic issues as well, after any form of exertion whether it be emotional, cognitive, or usually physical, will often happen sort of not right after, but sometimes a day after they'll experience what are called crashes. 

It's not rare, despite the fact that it is the most underfunded disease per disease burden of any entity in the United States in terms of NIH funding. It's not rare. Its’ estimated up to 2.5 million Americans live with it. And that to give an idea is more than AIDS and Multiple Sclerosis combined. So that is a large number of people. But this number will likely quadruple in the aftermath of long COVID, which I know that we will get into at the end, but it's around half of patients with chronic symptoms after COVID meet the case definition for ME/CFS. 

So I hope that gives a little a little sense of some of the commonalities. But you know, also sort of laying out the basics of what ME/CFS is. 

 

Aaron Goodman  6:02

And you have been looking into ME/CFS in a very in depth and fascinating way in your research. Also, could you share, is it a condition that you experience yourself, and as a parallel, do you also experience chemical sensitivity?

 

Emily Lim Rogers  6:18

One of the things I talk about in my research, as I was writing up my my field notes, I looked at some field notes, I believe, from 2017. And in the field notes, I described myself as an able-bodied ally, who would help with physical things, you know, stacking chairs, things like that. Over the course of my fieldwork, I actually developed a condition that is often comorbid with ME/CFS, and shares a lot of the same symptoms. One symptom that's important about ME/CFS that I neglected to mention is also this question of brain fog, and cognitive lapses and I think, things of that nature, which can be quite debilitating, especially for those of us in knowledge work, right. And my understanding is that people with MCS often experience that as well. 

So for me, I developed Orthostatic Hypotension, and I also developed, I got diagnosed with Ehlers- Danlos Syndrome, which is a connective tissue disorder. And on top of that, I did also get diagnosed with Mast Cell Activation Disorder, which I imagine has a lot to do with, I wouldn't be surprised if some of the pathophysiology is right are similar to chemical sensitivities. 

I certainly know that there are, you know, this laptop I'm on right now. It was off gassing for a year, I mean, and so I would get rashes on my wrist, and I would get I open the laptop, I got itchy all over my face. And these I'm allergic to one of my friend's basements, which is unfortunate because she has a very cute house in Kingston, a very cute and old house with a with a mouldy basement. And so I am definitely chemically sensitive. 

It's been interesting, though, because I only have sort of some triggers. And I know that's common with multiple chemical sensitivities. One of the things we can talk about right is how often the symptoms are actually similar, but there are different paradigms for how we talk about them. I do think that these diseases can be distinct at the same time, right? We don't have distinct biological markers to tell them apart. And we can also talk about what is what are the importances of distinguishing diseases? And at the same time, how can that perhaps a road coalition building right between groups that faced similar challenges of socio-medical doubt, like I mentioned, and underfunding of research, and that's, of course, part of the reason that I'm on this podcast, right, in general is to think about the overlaps between these diseases and the common struggles that they experience politically as well.

 

Aaron Goodman  8:56

Is ME/CFS a gendered illness, in the sense that many people with the condition are women?

 

Emily Lim Rogers  9:03

One hundred percent, it’s gendered. Tthere are more women who do have ME/CFS. And part of those reasons are, you know, because of the perhaps hormonal things we know that for autoimmune disorders in general, cis women are more likely to experience them. However, there's this question of are men under-diagnosed. So the biological and social here, I think, are never never fully separable? And I think that's something that I think about in my research, in the first chapter of my book project, I talked precisely about this gendering and racialization of Chronic Fatigue Syndrome and what I call sort of a pre-history of this notion of chronic fatigue. And again, that's common, it's a symptom of MCS as well. And I think that even this very notion of chronic fatigue is gendered. You have, of course, in the 19th century, the pain paradigm of hysteria, right, which was gendered. Now at the same time you also had this diagnosis of neurasthenia, which some people tie to hysteria, but actually neurasthenia was sort of the respectable diagnosis that men got with this presenting with the same symptoms as women in late 19th century. So one was respectable, the other was dismissible. 

The paradigm that we have today? It isn't it isn't part of what I traced in my research is how stress and burnout are now the sort of prevailing paradigms for dismissing ME/CFS as essentially psychogenic in nature and not psychosomatic, we can talk about like a soma. And I think that is real, I think that trauma can make you know, for me, I know that areas that I've had trauma and historically, my pain is worse there. And that absolutely does not mean that this cause this was causal, right? You know, if you look at my connective tissue, you're gonna see that it's not it's not working properly, right. At the same time, these things can both be true. But so stress only became a widely accepted scientific paradigm in the late 1970s and 80s. That is around the same time, that MCS you know, if you look at Murphy's book, “Sick Building Syndrome,” right, this is when same time you have the feminist health movement, same time, you have sick buildings, right? These are changes in architectures, same time that you have a proliferation of plastics, right. And the same time that ME/CFS was first federally investigated by the CDC, which would be the 1984 outbreak in Lake Tahoe. That was the first time there was sort of an official government recognition in the U.S. at least. And this is sort of going on at the same time. and Britain, for instance, I know less about the Canadian context, but in Britain, I know that usually around the late 70s. 

So all of these things are colliding in ways that make for sort of a perfect storm to dismiss ME/CFS, as it used to be called this yuppie flu. Now, they weren't that said they it was not said they were hysterics, although the spectre of hysteria, certain certainly looms. But I think one of the things I want to think about is the more proximate discourse was one of stress and burnout, and it was applied disproportionately to white bourgeois women, that scales all the way up to who can get a diagnosis in a doctor's office. And part of what I talked about as professional as women entering the professional classes on mass for the first time in U.S. history is also coinciding with this, right, so then that you have a racialized component to that as well. 

 

Aaron Goodman  12:35

I wanted to ask if the amount of toxins we all experience in our everyday lives is one of the reasons we're seeing a greater number of people falling ill with conditions like chemical sensitivity. 

 

Emily Lim Rogers  12:58

I mean, we know that but is it parallel? Is it similar also for CFS, the impact of toxins in the environment? I think certainly, I mean, I think certainly it is for my own diagnosis of MCAS, Mast Cell Activation Syndrome. My doctor, when I got diagnosed, I said, what's causing this? And she said, “Well, do you want the long answer the short answer?” And I said, “Long.” She said, “Okay, so in the late 1970s, early 1980s, this proliferation of [all sorts of chemicals].” And I was like, “Well, you know, it's like a medical historian, medical anthropologist, I was like, “This is great.” 

So in the ME/CFS community, I think it has been under-emphasised, I think that they have focused a lot more on finding particular genetic markers. As ME/CFS outbreaks vary, very similar to ME/CFS have occurred throughout history. There was one in Iceland in the 1930s. There was one at the Royal Free Hospital in London in 1955. So obviously, these were before some of the some of the things that we've been we've been talking about, there is the paradigm that essentially it's a virus that triggers this pathological response in the body, for reasons that we don't know it reactivates other viruses causing these systemic neuro-immune effects. So that's sort of the paradigm for ME/CFS. But the question is why? Why are more bodies experiencing that response to an otherwise benign or acute, let's say, virus, you write that ME/CFS is defined by profound exhaustion and creates significant impairment. Despite this persistent fact ME/CFS has over its four decades of existence struggled to be taken seriously. Decades of dismissiveness have led to several repercussions. There's no summarising. Now, there's no political urgency, meaning that the research is under-funded. 

Does that remain to be the case? It has been the case for so long that it then has repercussions in the present. One of the reasons to potentially be optimistic is the ways that ME/CFS is receiving more coverage in the news than it has, since by my estimation as someone who did a lot of archival research since 1990. And that's because of long COVID. 

But just to back up for a second in terms of those four decades of dismissal that ME/CFS has had, since its formal recognition by the CDC, as I mentioned before, it is what I call recursive, the process is what I call recursive because without political urgency, there is no funding for things like treatments. But then without treatments, the ability to advocate for the disease becomes really difficult. And I think there's a similar I've seen from long COVID activists, a similar phenomenon going on where people are so disappointed because they want to be stronger advocates, but they are they live in exhausted bodies. And as I said, bodies that crash after almost any form of exertion, whether it's writing an email to a state representative. I mean, I was in meetings in my fieldwork, where someone said, that was all I could do all day. Right. And so this is a kind of vicious cycle here with long COVID. Yes, there are more mentions of ME/CFS, their pathophysiology might end up being really similar. But I have to say, the research on this is starting now. You know, the funding starting now, imagine if we had had four decades of research of sustained research on post viral illness, how much of a better position we would be in now to treat long COVID. 

And so a lot of the patient activists that I've been working with since 2016, and many of them have been sick since the 80s. There is some resentment there. Because they were not taken seriously before now. They're at least taken a little bit seriously. But we might have the question of long COVID I'm, you know, you could be more or less optimistic about it compared to ME/CFS. There is more stuff going on. There are long COVID clinics across the country, there's only a handful of clinicians for ME/CFS across the country, and there's only really one or two clinics for it. And they're both on the coasts. So who can access those is, you know, a really important, important question. So decades of underfunding are kind of gonna bite us back the right met with fogginess and invisible illness, disbelieving families, social isolation, people with ME/CFS are not in the best positions to advocate for themselves. And they are also frequently without people to advocate on their behalf to our folks with ME/CFS. 

And if we could also talk about folks with chemical sensitivity, because I think this is one of those places where there's a lot of overlap, right? How do folks with chronic illness best advocate and be can become activists when there's so many challenges just doing that? One of the things I think about a lot in my research is someone who is trained in an interdisciplinary environment, including Gender and Sexuality Studies, I think a lot about patient positionality. Those with ME/CFS, you have this challenge where most people don't get diagnosed till middle age. And like I said, most people with ME/CFS are women. This patient profile is precisely positioned as caregivers, rather than people in positions who to receive care. A lot of them are in the squeeze generation, right? They're caring for their older parent ageing parents, and they have kids, and I mean, who is going to support them when they're the ones expected to give all the care. 

And so I've seen gender differences in my research, where sometimes men have more support from their families. This is of course not universal. And I wouldn't even say it's common, but it's a gender dynamic that I did. There are some some differences there with MCS, I don't know what the general demographic is. But I think the point is that when you have an invisible illness that isn't validated by biomedicine, you have trouble with even just interpersonal belief, not only the medical doubt, but into personal belief. And that is what makes it so difficult. So you know work by Franberg and [author unknown], for instance, is about parents of disabled children, right? The children are the ones that live in debility. The parents are often able-bodied. Right. So the parents are the sort of natural advocates, I mean, not natural in the sense of biology rising. That's right, but in the sense of their social position with ME/CFS. Again, you don't quite have this sort of able bodied-ally right?

 

Emily Lim Rogers  20:00

Consider HIV/AIDS as well. Why was activism surrounding HIV/AIDS successful? One of the reasons was that you mobilise a demographic of young people who would be who would have, for instance, pre-symptomatic HIV infection, or who saw themselves as people who could get the disease. And so they were people who had to be invested in this. 

One of the things that people with ME/CFS say, I heard at a conference when someone said that, “No one will care about this until they fear that they will get they might get it, that this might happen to them.” And a lot of the sort of state senators or various people who sign or initiate bills on it, it's because a family member of them had has ME/CFS. So you can't see you can't see the illness. Of course, people with ME/CFS have pushed back on this notion of invisible because sometimes they they're lying in bed, they're quite ill they look ill, right. So they're, you know, there's some complications surrounding that. But when it's something that people can't see, they don't see it as something they should be concerned about long COVID It could change a lot of this, we'll see because everyone sees themselves as being able to get COVID right now, nowadays, of course, especially with Omicron.

So that's why long COVID If you've noticed long COVID has become more in the discourse, since OMA Kron some of that I first thought was because Omicron, people want to counter the narratives that Omicron is mild by saying, oh, there's still the risk of on COVID. But you know, actually, when we were in Delta, for instance, people were vaccinated who thought, “Oh, I won't get infected with COVID.” 

Right. Now that everyone sees themselves as being able to be infected by COVID, or almost seeing as inevitable, “Oh, no, long COVID could happen to me. A post viral syndrome could happen to me,” ME/CFS is adjacent to those conversations. They're not the same. But again, as I as I stated, around half of people with long COVID could get diagnosed with ME/CFS. 

You talk a little bit about HIV and AIDS activists who were and to a degree are still routinely stigmatised. And you I believe you argue that activists who have ME/CFS are inspired by these activists. Why is that the case? And what do you think folks with other chronic illnesses, including chemical sensitivity can take from can learn from activists, you know, around HIV and AIDS? What can we learn from them as we continue to engage and inform and ask for change?

 So I'm going to give an optimistic answer and then I'll give a pessimistic answer. The optimistic answer and why people with ME/CFS have been inspired by HIV/AIDS activism when it was very successful. Of course, I think, too, you have the issue of stigma that you mentioned. Now the stigma might work different ways does work different ways for different patient profiles, right. There's there still is stigma around HIV AIDS. But there was serious obviously, at the time there were in the in the 80s.  ME/CFS is contemporaneous with the discovery of HIV. Actually, those happened in the same year, 1984 — rhe official government recognition of CFS and the discovery of HIV. So these are thoroughly contemporaneous. I think that's part of why right the activism has been intertwined. 

So there's the issue of stigma, but they're stigmatised in different directions, right? People with ME/CFS are stigmatised as people who shouldn't get ill, you're not really ill, you're not really disease and gay people are pre-stigmatised as people who are sick, right, at least at least in the 80s. Right. People who are sick. Third, you have governmental neglect in both that I think operated in the same way, drugs into bodies, right, you have that would the HIV/AIDS activism. And then with ME/CFS, you have we need treatments, right? So it's pushing these governmental agencies to do something. But as I said, ME/CFS does not have that same political urgency as HIV activists were able to achieve, in part because they don't die dramatic deaths, right? This is sort of most impairing part of ME/CFS — the social isolation, right? So instead of being in the streets, there's social isolation is the main, it's not dramatic deaths, but it's what people with ME/CFS might call themselves the living dead, right? So it's not mortality, you don't have the, you know, a year after a after an AIDS diagnosis, you die, right, with ME/CFS. What it's what I call this protracted state of stability, where the present persists, the chronicity persists in this way that that is debilitating, rather than these gruesome, dramatic deaths that you had in the 80s. 

 

Emily Lim Rogers  25:00

So that brings me to my pessimistic answer, which is about the fact that how do you get out of this? How do you get out of this knot that's created? Where the most debilitating factor, one of the most at least is social isolation is the inability to participate in public life. Right? How do you create activism around that? It's hard to get bodies in the streets, right? Someone told me during my fieldwork, there was a protest at Central Park. And he asked what it was about, and I said it was about ME/CFS, it has been neglected for a while it actually is serious. He said, “If it were really serious, there would be hundreds of people out here, not just dozens.” 

So then it becomes hard and for people to see that political urgency in the same way. And that's why we need a reorientation of what illnesses count as real and how we adjudicate this is real, or this is not real. And that is a big commonality with me, MCs. Similarly, MCs, right, there might be public spaces that are inaccessible to them. So we need to understand the ways that illness intersects with public space and the ability to inhabit public space. And then and then advocate, right, and you talked about the challenges of activism, right being out in public spaces. And we know for folks with ME/CFS and chemical sensitivity, that can be very challenging. I wanted to ask you about what your thoughts are about internet activism, because I follow a lot of folks with  ME/CFS. And a lot of people post images of themselves, in their homes in bed. And so that makes it very visible for me. And in the same in a parallel way. A lot of folks with chemical sensitivity are using the internet and really compelling ways to inform and educate and are being activists, do you feel that there's reason to hope that this kind of online activism can create awareness about about these illnesses and lead to more funding, more research, more accommodation, and more, I think that social media has been a big part of why ME/CFS activism has started to take off and say the past decade, it really, really has key organisations that were more politically willing to put themselves out there were formed around that time, me action being one of them, big one of them.

So the internet has been a crucial link for people with ME/CFS, not only to make social ties with one another, but also to create activist worlds. And that's something I talk about in my in my research. Now, I'm sort of thinking alongside media studies scholars, right is there the siloed pneus of it that you get through algorithms, and that's something where it's a little bit out of my wheelhouse with the technical language, but I have colleagues who work on Twitter and the ways that sometimes you only see what you want to see, sometimes Twitter can be in an echo chamber. So there are differences. I've written a lot about virtual ethnography and stuff like that. And I see that was ethnography. Right, we can't understand online worlds as inferior proxies to what we really want to study. Right. So and similarly to parallel that with activism. This is real activism. It really does do stuff, especially in bringing people together who otherwise would not in organising people essentially. So as a tool of organising, I think it's really important, whether or not it has an effect on the public, that's the same as shoving a sign in their face and making them see you. I'm not going to say it's the same because it's not, however, in terms of this question of invisible illness to revisit that part of what it's doing is making invisible illness visible. And that is something that is important to cultivate the political urgency that would be needed to really fund ME/CFS and better the lives of people with ME/CFS alongside other chronic illnesses.

Aaron Goodman  28:53

I wanted to talk a little bit about one area of your research, and you write about the implications of capitalism for folks with chronic illness. And because the the capitalist nature of our society dictates the number of the rules around the number of hours we have for working for sleeping, I wanted to ask you what happens when people cannot or do not fit into these rules and systems. So you write, "Society imposes strict constraints on walking and sleeping that leave behind those who are literally off beat out of sync with the rhythms of the working day. An appreciation of a multiplicity of different types of sleepers, becomes in this account of a casualty of capitalism." So are folks like many of the listeners of this podcast with chemical sensitivity and folks with ME/CFS,  are we casualties of capitalism? How do we make it work in the system that is so it seems to be so inflexible?

 

Emily Lim Rogers. 30:00

So many ways. Yeah, definitely this question of casualties of capitalism. The thing about capitalism is that it naturalises fatigue, Jonathan stern, and this new book, great book, diminished faculties. And the fifth chapter also does a similar sort of history of capitalism that I giving an overview of in the book, and that first chapter I mentioned about the gender and and racialization of fatigue. He leverages his concept of normal impairments, there are certain things that we just accept, right, we accept a degree of, if we're in front of a computer all the time, yes, we will grow nearsighted. That's, you know, if we accept a, you know, there's no truck restrictions on this street, our hearing will go or if we are allowed to have high powered hand dryers, he talks about these things are going to impair everyone to almost everyone to some degree, but we accept them. Now, he adds not only the sensory impairments, but the very question of fatigue, we accept fatigue as a normal some degree of fatigue as a normal state of capitalism, right. Fatigue itself did not enter English language medical journals until the last decade of the 19th century. And it was thoroughly caught up in industrialization.

And what happens during industrialization is and modernity in general, right is the standardisation of time. But importantly, what happens is hourly wage labour, right. So as opposed to things like piecework, so everyone is brought, and this is invoking Matthew J. Wolf-Meyer's book, in "The Slumbering Masses," as well, under this condition of time under these regimes of time that your livelihood and your participation in society are, are at stake here.

So for instance, right, if people with ME/CFS expend the same amount of energy for them full time work is a 20 hours for sort of mild to moderate, ME/CFSpatient, but they still get paid the same, they still get paid half of what someone who could work 40 hours a week will get paid. Right. So the rigidity of the working day, I think this is not what causes ME/CFS. So just to just to think about what is actually casualty here of capitalism, I certainly wouldn't say I mean, Jonathan Stern would say that some degree of fatigue is sort of a casualty of capitalism. I would agree with that. With ME/CFS, which is a specific debilitating illness. What I would say is the casualty here is the ability to see it as an illness and to accommodate it, because we just missed it as that's just normal. That's just burnout. That's just stress. Everyone has chronic fatigue. We're all tired. Right? But that's not the case here. Well, and but why are we all tired?

You know, Stern would argue and I would argue, too, we're tired because of capitalism. So ultimately, what I'm thinking about is how the normal kind of edges out the pathological here, right, if we normalise chronic fatigue, we do not see this particular debilitating disease. And that's the same thing with with MCS, I would imagine, right? Is that like a lot of people have reactions to everything, and that we've also naturalised chemicals in our environment, right. And so I think the casualty here is the dismissal of these illnesses. And just building what you're sharing folks with chemical sensitivity often are excluded from the workplace or school and other places, right, because of the way that capitalism is intertwined with the use of everyday toxins that harm everyone, but we just can't be around. So were excluded.

Aaron Goodman  33:17

And what's happening recently, and I think it's on a lot of people's minds, is in Canada, we have medical assistance in dying. It's a constitutional right. And there have been, there's been one instance of a person who had medical assistance in dying. She had severe chemical sensitivity, and there are at least a couple others who have applied to it. Capitalism is not providing adequate or safe housing for them. So the only alternative that they see is medical assistance and dying. So that's another casualty of capitalism, would you say?

Emily Lim Rogers  34:15


Oh, absolutely. And with ME/CFS, it's, it's it's very, I mean, it's really, really tragic, because suicide is one of the leading causes of death. It is not because people with ME/CFS are depressed per se, although they might be depressed because of ME/CFS. It's because the lack of viable ways of living in the world and a world that values bodies for their ability to reproductive and that uses for the MCS example that uses toxins and values profit over people and with things like housing, we don't want we dismiss these diseases, in part because we don't want to do the things that we would need to actually take care of people. And that is an instance of valuing profit over people. Of course, in the US, we have a for profit health care system, which is a whole other question about hoq your ability to get treated is just so stratified. There are struggles everywhere.

The NHS, for instance, is like you just need to go to therapy and exercise which make no sense, an exercise actually makes it worse for ME/CFS. Right? There's no effort to actually tackle these things because they would require re imagination of our world and what we value. It's a capitalism problem, for sure. And it's a bio political problem, because I'm often asked, because I'm an Americanist. Right? I work on the U.S. because there are so many particularities to how healthcare works, you're not asked Oh, well, what's it like in the context of a European context? For instance, they face similar problems, because maybe the problem is capitalism, right? And the ways that we want to manage bodies according to standardised ways of living.


Aaron Goodman  35:49

It's been really fascinating listening to you. Thank you so much. I just want to recap a little bit about what we chatted about, we talked about you provided a very helpful overview of ME/CFS. We talked about some of the major symptoms, the fact that folks, just like people with chemical sensitivity are often misdiagnosed. We talked about ME/CFS being highly gendered, underfunded, we talked about capitalism and how it excludes people with chronic illness. You talked a bit about activists who have ME/CFS, or trying to create awareness and create change. And I think there's some information there, that'd be really relevant for folks with chemical sensitivity. You talked about the implications of long COVID. And that could potentially lead to more people in the medical profession, accepting acknowledging chronic illness, like ME/CFS, and chemical sensitivity. And I want to just too, as we move towards wrapping up our chat, again, thank you again for for joining me and for sharing, is there anything else you'd like to share?


Emily Lim Rogers 36:56

I would like to share that we are approaching a wave of disability as everyone calls it, and MCS and ME/CFS share the same awareness month and actually even day, perhaps, that is because of the really important coalition building that did happen. At one point, I think, especially in the 90s. But then there's this need for Western biomedicine to categorise us into separate boxes, in order to be legitimately ill. I would say that going forward, especially with the variety of things that people with long COVID actually end up getting diagnosed with right, POTS, ME/CFS, what have you, we need real coalition building, if we're going to figure this out. And we really need to figure this out. And we need to listen to disabled people and figure out what it would take for everyone to be able to have a livelihood in this world, you talk about a way that we're going to face a wave of chronic illness, right? 

And you're right, that is not just tied to a single biomarker, but to larger scale changes in our environments, food systems, antibiotic use, etcetera. So is there more in common perhaps, between these illnesses that we often do not see? I think that our immune systems have been modulated, you know, these things we know, they act on our immune systems. And I think that some patient activists, especially the ones that are really focused on research, and you know, there are other groups that are more focused on how do we, as disabled people support each other take care of each other, right? 

There's a variety of flavours of activism, the type of activism that I studied, in my research, one of the things that I found is I've phrased it this way that separating out disease categories is both necessary and perilous, it is necessary because in the eyes of biomedicine, we need disease specificity, right? If it's going to be real, or something like that, we need to be able to run randomised controlled trials, where people with comorbidities might literally be excluded from the study, evidence based medicine, all of these things that make it complicated when actually there are just so many factors here that we don't pay attention to. So that is definitely one commonality. Now, it's perilous separating out disease categories, because you might erode coalition building and that these diseases, you might get wrapped up in the same regimes that you're actually trying to counter, right. It's perilous because they can become balkanized. These chronic illness groups. I'm actually really optimistic though, after seeing long COVID, because this is just as actually kind of an umbrella, right, that can gather multiple groups with different stakes and this because of their individual illness, there's also the issue of we're fighting for crumbs of funding here. They're fighting for crumbs. And that's why it's balkanized. You need to support this one knows support this one support this one. It's as if there's infighting, because we've created false scarcity. We could be funding all of this, we could have been funding all this really well the entire time. But if you don't value it, if you don't see it, then you're not going to and then so everyone's just fighting for these little clumps. Long COVID might change a lot of this. Right. And, you know, unfortunately, as I mentioned earlier, so many people don't take a disease seriously unless they think it can happen to them. More and more people today are seeing themselves as people who might become disabled. Now, there's a lot of disavowal of that in our very contemporary moment with the current wave that we have there is a disavow. I do want to say that, that so many people think well, long COVID can't happen to me. It can't happen to me. But you in earnest, right? Empirically, we have a lot more people, just the scale of COVID is so different. It's so large, there's this question of scale as well. When you have a mass disabling event, what will that do? Will that change and push for funding and more awareness of these diseases? 

 

Aaron Goodman  40:51

Well, thank you very much, Professor Rogers for everything you shared. 

 

Emily Lim Rogers  40:54

Thank you, Aaron, so much for having me on. I really enjoyed this conversation. And hopefully this dialogue between ME/CFS and MCS and just putting them together can illuminate some of the really important things that we need to think about our current moment especially. 

 

Aaron Goodman  41:08

That brings us to the end of this episode of the chemical sensitivity podcast. Thank you very much to Professor Emily Lim Rogers for speaking with me. The podcast is produced by me, Aaron Goodman, and Kiana Holland. 

We release new episodes twice a month. Subscribe for free wherever you get your podcasts. Leave a review on Apple Podcasts. It's a great way to help others find the podcast. Follow us on social media. Just search for the Chemical Sensitivity Podcast, or Podcasting MCS.

If there's someone you'd like to hear interviewed on the podcast or a topic you'd like us to explore, just let me know. Email me at info@chemicalsensitivitypodcast.org and thanks so much for listening.

Opening clip from Emily.
Aaron introduces the podcast and episode.
Emily explains ME/CFS.
Emily discusses her health status and conditions she has that are associated with ME/CFS.
Emily explains that MC/CFS is a gendered illness and that many people with the condition are women.
Emily discusses the role of chemicals in our everyday environment that contribute to illnesses like ME/CFS.
Emily explores HIV/AIDS activism and how it influenced people who are activists focused on ME/CFS.
Emily talks about the challenges that people with ME/CFS face when trying to advocate for greater awareness and recognition of the illness.
Emily discusses impacts of capitalism on people with chronic illness, including ME/CFS and MCS.
Emily talks about long COVID and how it may lead to wider understanding and acceptance of ME/CFS and other illnesses.
Aaron concludes the episode.