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Hi everyone, and good morning. Um, if you're joining here or this presentation in person, just wanted to thank you for being here. Thank you for waking up early. I know for us, a lot of us who are disabled or chronically ill, it's really early, so I do appreciate you all for joining. And if you're catching this on video, thank you so much for taking the time to watch this or listen to this.

My name is Victoria. I'm a social worker by trade, and I'm also a disabled person who is bed bound and has a fun assortment of chronic illnesses, so I'm just happy to be included today. And I just wanted to start us off with an understanding, or rather maybe a conversation, about rest and this idea about self care.

So on the screen you will see an assortment of different headlines, and some of these may sound familiar to you: "reclaiming rest, why black women deserve to prioritize themselves"; "rest or rot, too much bed too little health, guardian article"; "I rested my way to recovery from long covid, I urge others to do the same"; next, "A new study explores the transformative power of deep rest; and one of my favorites from the nap ministry, rest is a form of resistance because it disrupts and pushes back against capitalism and white supremacy".

And so as you're reading or listening to these different headlines or quotes, you might think, yeah, I've definitely heard these things said to me before. I've probably said them myself, and I resonate with some of them. Some of them sound kind of ableist, but something I've been thinking a lot about is how a disease like ME/CFS really deepens our understanding of rest and how it's connected to our understanding of care.

That brings me to this article by Trey Washington that was published in Scalawag, and the title is "Rest Is Not Resistance and That Is Okay". It was published on March twenty eighth, twenty twenty four, and there's a screenshot of the magazine cover which has a black person sort of leaning over the kitchen counter, just taking a beat, taking a rest, taking a pause, and they're in the kitchen.

And you know, before I was bed bound, I was an organizer, I was in the streets protesting. I was also a doctoral student, and I was always told, you know, you need to rest and rest is the way we fight back. And not that I disagree with any of those sentiments, but I was so tired of rest being tied to labor in a way, or work, or just being tied to something at all times. Why couldn't I just drift without it being tied to more demands, more extraction from me? And it just felt so individualistic. And again, this is no shade to people who really highlight that rest can be empowering and resistance and all of these things. I definitely agree, but there's also an aspect of rest that can sort of ignore how individualistic we use it sometimes, especially when someone is disabled.

And so I read this article by Trey Washington. I thought it was so beautiful. I encourage people to read it. And the subtitle is On Cancer, Grief and Audre Lord. It really got me thinking about what is needed to rest. How do people with diseases like mine conceptualize rest? And we'll get more into that. And what does rest look like when it's not tied to a liberation or a fight against white supremacy? And again, I'm gonna say this a bunch, this is no shade. I love the nap ministry. I love that we're encouraging each other to rest, but I just wanted to deepen our conversation about it, particularly in the way that disabled people and people with chronic illnesses navigate it.

Presentation: So this, the title of my actual presentation is called When Rest Isn't Resistance: Lessons About Rest and Self Care From People With M E C F S, or Myalgic Encephalomyelitis. On the cover page here is a bed and a bird cage kind of situation to really encapsulate some of the things that I'm going to talk about.

Overview: So as an overview, this presentation is going to dive into some preliminary results from an ongoing open ended survey I have going on right now that's focused on Myalgic Encephalomyelitis. I'm taking basically a snapshot of the sample, which right now is at two hundred and two people, with most of those people being severe. And the presentation is gonna really talk about how people with mecfs provide insight into rest, reconceptualizing rest, or expanding our ideas about rest and care, and how to live out disability justice principles.

Study Design: The study design, so just some of the technical things: there are three surveys that are part of the study. There's a low energy survey, a general survey, and a provider survey. I split the people with mecfs survey into two versions. One is tailored more to people with lower energy thresholds, so really focusing on not provoking pm, and there is a reduced number of questions. So there weren't any questions specifically about experiences of pm, just because we know that people who are more severe can have p m provoked by less, including emotional exertion. So I did minimize the amount of questions there.

And then there's also a focus on transparent informed consent. So the number of questions, type of questions, were all included in the informed consent. People had options to choose between low energy or general. And if you were a provider of medicine or healthcare and you have worked with people with me cfs, those were also included. I'm not sharing results from the provider survey, but just wanted to give some context.

Study Demographics: And these are the study demographics for the low energy and general survey sample combined. Most of the people who participated in the study did have severe form of the disease. So we have forty two percent severe, twelve percent very severe, one percent extremely severe, forty three percent were moderate, and four percent were mild. So I thought it was really interesting that a lot of people with severe mecfs contributed to the survey.

Disease duration was also very interesting. Forty percent of the sample basically have had amy for one to five years, and thirty two point five percent had amy for more than ten years. So two different sides of the spectrum, but I thought that was really interesting, and it speaks a lot to having a shared experience when you see the results coming up in the following slides. For other identities, sixty one percent of the sample was identifying as lgbtqia plus or gender diverse, and only thirteen percent identified as racially minoritized. And yeah, I thought that this is a really interesting sample of people with ME.

Patient Centered Research: Just a quick note about patient centered research and why it matters. Patient centered research can help destabilize the normalization of abandonment. In other words, it disrupts the idea that lack of treatment is normal. It disrupts the status quo, provides counter knowledge. It also provides insight into real world experiences and disease burden. So what does this actually look like day to day, to have this disease? And last but not least, it helps contest problematic treatments, treatments that harm not help. It gives some testimonies and experiences with various treatments and how people with mecfs are navigating this landscape.

Content Warning: So there is a content warning. If you do have mecfs or just energy related diseases or you're chronically ill or disabled, some of the content we cover may be triggering. It does talk about physical emotional discomfort, loneliness, isolation, things like that. So please take care if you need, turn this off if you need, or step out if need be as well.

What is ME/CFS: So what is mecfs? I know this is a bit backwards, we're kind of working backwards here, but what is mecfs? According to a cme continuing medical education course or article that came out by Grach et al., mecfs is a chronic neurological disease. And there are estimates that between one and two point five million people in the us alone are impacted. And this disease also remains one of the least funded diseases. To the left you will see a picture of me when I was earlier in my mecfs journey, with my still sick still fighting tank top on and eye mask cover on as well.

So part of mecfs, a unique characteristic of the disease, is post exertional malaise, or pem. And this is defined as a flare in symptoms or appearance of new symptoms after exertion, often presenting after twelve to forty eight hours. And as for the cdc, patients must also present with fatigue and refreshing sleep and orthostatic intolerance or cognitive impairment for diagnosis. And I did use the cdc guidelines for mecfs for inclusion in the study, whether self diagnosed or diagnosed by a medical professional.

PEM quotes: I thought it was important that when we talk about pem, we are giving real world examples. And so I wanted to include a few notes from my study about what pem feels like.

The first quote says it's like a deep in your bones kind of tired, unrelenting. It's like I've spent everything inside of me and there's nothing left to give, nothing at all.

Second quote, feels like being poisoned, limbs heavy like concrete, brain feels inflamed and full like it can't handle anymore, eyes get puffy and sensitive, body and brain desperately want nothing, no stimuli, no movement.

Next quote, pm is without doubt the worst feeling I've ever experienced. In its worst form, it feels as if my veins are filled with concrete and I will never be able to move again. Even during milder episodes of pm, I have intense feelings of impending doom and depression. I only experience depression during pm, and it's often the first indicator.

The last quote, torture, poison my body like I am dying, like I am getting the flu, like I have been hit by a big truck, like my body is getting pulled apart at every limb, like I can't catch my breath and my heart is going to beat out of my chest just from sitting up or going to the bathroom.

And so while we talk about pm being just a flare up of symptoms, it's really important that we understand what exactly patients are feeling on a physiological level, a psychological level, everything. And I feel like the quotes that people provided really illustrated this.

Pacing: What is interesting about having mecfs is that, unlike able people, able bodied people as well as people without energy limiting diseases or disorders, they may not have to think about rest so often, and rest is often restorative for them. But for people with this disease, who have things like pm, rest is so consuming. It takes up all your time. It's what you schedule your entire life around.

And this screenshot on the screen right now is talking about pacing. So it says, stop. Stop what you're doing before symptoms start or as soon as you notice symptoms getting worse. Rest. Take regular rest breaks during the day and while doing activities. Pace. Break activities into smaller parts and rest in between. This helps your energy battery recharge. Everyone is different, so take time to learn how much you can do and how much rest you need.

Some questions to consider: how much rest do you need to recharge? Are you getting enough? Are you constantly draining your battery without taking time to charge? Do you need to build in more rest time?

And so this is nothing, there's nothing negative I have to say here. It's just to point out that rest is so central to every single aspect of our day when you have mecfs, and it's not necessarily something that is meant to restore or make you feel better, but it's something that is needed because your body is just not functioning how it should be. And so these are constantly the things that people with this disease, my disease, are thinking about.

Finding 1: And when I asked people in the survey, your first initial reaction, when I say rest, what does that bring up for you? How does it make you feel? Most people who took the low energy survey reported that the first emotion they think of when it comes to rest is solitude and loneliness. And these feelings of solitude and loneliness were most often accompanied by sadness and stress or anxiety. And you see here how this is completely contradictory to how we talk about rest normally. If you remember going back to the first slide, it talks about the transformative power of deep rest and how rest helps us recover and how rest is a form of resistance. But when I asked people with mecfs, this disease, they said it makes me feel solitude and lonely and sad and stressed and anxious.

And when we dive in more to the quotes, this is what people had to say.

The word rest makes me feel very tired in itself. I'm apathetic and tired about it. And that was a person with moderate mecfs.

The next quote: resting and pacing is now my whole life. Sometimes I'm so tired that even when lying down I wish I could lie down to rest. I have to rest after anything I do. I miss not having to rest. That was a person with severe mecfs.

Next quote: rest feels like both a needed thing and a jail cell. A necessary evil, something unavoidable that should bring happiness and comfort, but it doesn't. My whole life revolves around resting. That was a person with very severe mecfs.

The last quote: letting go of control and turning off. Sometimes it is relaxing, but when I'm too tired or crashing, it feels almost violent to rest. And that's a person with extremely severe mecfs cfs.

 Finding 2: When I asked, how would you define rest in terms of all of these things that we are constantly hearing? What is rest to you? The number one option people picked was rest is something I have to do. Second, which was a close second, was rest does not feel restorative. And three, rest is not the same as sleeping. And I thought this was just, again, so interesting because it's sort of counter intuitive in a way. You would think rest is extra and rest is something that feels good and it helps, but for people with the disease, that's just not really always the case.

Finding 3: So next I asked about, okay, well what are the barriers you experience that prevent you from resting? Because even if rest is not something we like to do, there's still things that get in the way of it, even though our body so desperately requires it. So what are those barriers? What do they look like?

From the full sample, so people from the low energy survey in general, the number one was physical symptoms or experiencing pm. So having physical symptoms, pain, discomfort, agony, that got in the way of rest, which creates more p m. So it's just this cycle of continuous suffering. Number two is caregiving and parenting obligations. People with this disease, they have full families. Some don't, but a lot do, and a lot also have children. Some are taking care of other disabled family members. Some have pets. And so caregiving and parenting obligations were second.

Third was financial constraints, not having enough money, not being able to afford doctors appointments and medicine and just food, a roof over your head. And four was having no relational support at all. So people who don't have a significant other, a partner, parents to rely on, siblings.

Findings 4: Next I asked, do your friends or family understand rest and energy limitations? Sadly, fifty three percent said sometimes, and twenty nine percent said no. Only sixteen percent of people with mecfs in the study said yes, their friends and family understand rest and energy limitations.

Discussion: So what does this data tell us? People with mcs experience a variety of consequences from medical abandonment, navigating physiological torment on top of limited relational and monetary support. So again, a lot of this is coming from me cfs not being treated as a serious condition and not getting the medical attention that it requires.

People with mecfs are advised to adopt individualistic management practices as a means to survive. So we're not told to rest to heal, to restore. We're told to rest to survive because there are no other treatments. There are no other options. And so few people understand, even our loved ones.

What else do we know? Mainstream treatments for mecfs are not treatments. Telling people with mecfs to just rest is not, that's not a treatment. Treating mecf is a priority, and so is dismantling the structural, societal, and relational inequities or issues that make it difficult to navigate the world as a person with mecf. So it's not just that we have to treat me, but we also have to dismantle these different structures and inequities that make it really difficult for us to survive.

Disability Justice: So for those of us who do not have the power to create the treatments, there are better ways to show up for people with mecfs. That brings us back to the sins invalid disability justice principles that we're going to be focusing on. And there are ten of these disability justice principles: commitment across disability solidarity, leadership of those most impacted, collective access, intersectionality, sustainability, interdependence, anti capitalist politic, collective liberation, recognizing wholeness, and commitment to cross movement organizing.

The few I'm gonna focus on today that I think are especially relevant to the study are these here: commitments across disability solidarity, interdependence, collective liberation, commitment to cross movement organizing, shifting how social justice movements understand disability and can sexualize ableism, disability justice lens itself to politics of alliance.

Finding 5 & Cross-movement Organizing: So an additional finding was that when asked what types of supports people need, they said relational caregiving support as number one, pacing schedule flexibility as number two, and financial support income security as number three.

So how do other people organizing in these spaces show up for each other? Well, you can do that by learning about the disease and providing relational caregiving support. So it's not just about helping advocate for changes to get us funding for the disease, but actually physically and through online networks and things like that showing support relationally, helping us be not just understanding but accommodating, and making accessible spaces that allow for pacing and scheduling flexibility, and also showing up in terms of finding ways to provide financial support and income security.

So there are so many different ways that we can really honor mecfs from different spaces across other disabled organizing spaces, racial justice spaces, economic justice spaces, immigrant rights and justice spaces, things like that.

Committment to Cross-disability solidarity: Commitment to cross disability solidarity as well. We honor the insights and participation of all of our community members, knowing that isolation undermines collective liberation. Again, when we take into account people with this disease, we can really come to an understanding that we can't just tell people with mecfs to "take care of themselves" and "self care and I'm so glad you're resting", "rest is resistance". We have to really think about how saying those things might be harmful to somebody with disease.

But more than that, or in addition to that rather, how do we make our spaces more accessible for people who have energy-limiting diseases? Even within disabled advocacy spaces, are we providing ample opportunity for a wide range of communications? Are we giving ample time to review things and contribute to things meaningfully, not just as an added, but actually meaningfully crafting spaces for people with mecfs to participate and feel part of? and this is so important because as we saw earlier, so many people with ME/CFS struggle with isolation to begin with. and so it's really important for us to think about youknow, how do we bake in accessible spaces for people with Myalgic Encephalomyelitis even if we are already working from a baseline of, everyone here is disabled uhm our disability might look different and might require additional planning and consideration.

Interdependence and Collective Liberation: And this obviously relates to interdependence and collective liberation. And these are defined as we meet each other's needs as we build toward liberation, knowing that state solutions inevitably extend into further control over lives. No body or mind can be left behind. Only moving together can we accomplish the revolution we require.

So again, just really thinking about how can we together not just think about rest as self care or active resistance or yada yada, but how do we actually make it easier for people whose lives revolve around rest as survival? How do we make it easier for them to do that? How do we make it easier for them to survive? And in many cases, this is life or death for people with mecfs. How do we make it easier for people with this disease? How do we meet their needs? And in doing so, that creates relationships, that creates trust, that creates new ways of thinking about revolution. But we can't even get to revolution or fighting white supremacy if we're constantly not even able to meet our bare minimum requirements of survival.

Ending: Self care is not possible without collective care. That is one of the number one things I want you to take from this. Self care is not possible without collective care. As you saw from the findings, so many people with mecfs are suffering because they don't have adequate supports, whether that's financially, relationally, institutionally. It's a group of very abandoned people, and I am included in that group.

And so when Trey Washington was saying rest is not resistance and that is okay, it's really not just a statement, but it's a call to action. How can we collectivize rest, collectivize care to get us to be able to rest? How do we make it easier for each other? How do we show up for each other? How do we support each other? Again, self care is not possible without collective care, and collective care requires real solidarity. Show up for people. How do we do that? That requires real solidarity.

That is the end of my presentation. I know it's a little scattered, but I hope that it was helpful and provided some insight, rethinking rest as not just an individual act, but an act of collective care and solidarity. Really grateful for the opportunity to speak about this. The study is still open, and I'm looking forward to discussing more of those findings soon. And yeah, I just appreciate you all for listening and for being here. Thank you.

Citations:

1. Rest is Not Resistance, and That is OK - Scalawag

2. Grach et. al (2023)

3. Emerge Pacing Framework

4.  Sins Invalid