Title:
What If Your Most Impactful Work Happened From Bed?
Subtitle:
Elizabeth Ansell joins Alycia to discuss ME/CFS, invisible disability, chronic illness advocacy, and building power within your limits
Transcript:
Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week, we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths, let’s go.
Hey everybody, welcome back to Pushing Forward with Alycia. I’m Alycia, and we have another fantastic guest today and I wanna start the show posing a question. What if the most impactful work that you do happens from your bed? Our guest today is redefining what leadership looks like.
Elizabeth Ansell is the founder of #NotJustFatigue, a nonprofit advancing awareness, research, and policy for ME/CFS. I want you to explain that. It is a condition that affects millions.
But it remains widely misunderstood, which I believe. She’s been living with this and she’s helped drive federal legislation recognizing a national research roadmap, powerful, all from her bed, which she’s in today, which goes with the entire thing. This conversation is gonna challenge us.
It’s gonna give us new insight to new information. Elizabeth, I’m so excited to meet you. I’ve been gushing all over you before the show. Thank you so much for your time today and welcome.
Elizabeth Ansell: Yeah. No, I’m so glad to be here and thank you so much for those kind words. I really appreciate it.
Alycia Anderson: Yeah, you’re doing amazing work. And building a national movement is no small feat. From somebody who has stepped into your life in really hard ways, I would love to dive into your backstory a little bit, and learn about what your path has been, and what you’ve been going through.
Elizabeth Ansell: Yeah, absolutely, I’d love to tell my story. Basically, I was living a healthy life, for the most part, until I was 26. I had some strange health problems that weren’t really explained. That, in retrospect, make a lot more sense now. But when I was 26 years old, I was living in New York City. I was working in production at places like Showtime and ABC News. And then I started to get sick. I started having trouble sleeping. I started getting electric shocks up my arms. I started getting joint pain, muscle pain. Just a variety of bizarre symptoms. I did what most people do. I said, “I really have to go to the doctor.”
So I went to the doctor, and from that point forward, nothing what I experienced is what I thought I would experience. I was shuffled around to tons of specialists, not just in New York, but also in other places. And they either didn’t know what was wrong with me, or they misdiagnosed me, or they thought it was psychosomatic. So that was a really eye-opening experience, just because I had thought you go to the doctor, you get diagnosed, you get treated, some sort of thing like that. And what I experienced for about three years there was not that. Eventually, I just decided, “If I don’t figure out what’s wrong with me, no one may.” So I started literally printing out journal articles, reading textbooks, trying to teach myself about medicine when I had known nothing about it beforehand. And eventually, I came upon this disease called ME/CFS. And I’d love to explain. That stands for Myalgic Encephalomyelitis, which means muscle pain and inflammation of the brain and spinal cord slash chronic fatigue syndrome. And its hallmark symptom is that your symptoms flare with any sort of exertion. So if you exert yourself physically, if you exert yourself emotionally, or if you exert yourself mentally, then those symptoms that you have are going to blow up into what patients will call a crash. I saw that and I thought, “This is what I have. This is what I’ve been experiencing.” There’s very few specialists in this country and around the world, honestly. But I was lucky enough that there were two at the time in New York. I saw both of them and they both diagnosed me. Unfortunately, there’s no FDA-approved biomarkers or tests, but from just my experience and also these kinda tests they do that aren’t FDA approved, necessarily, I was diagnosed. And since then, I’ve been diagnosed by other specialists as well. So that’s my big story into how I was diagnosed. What happened after that is I had gone from being moderately ill to becoming very severely ill. In April 2016, so I guess 10 years ago now, I just started getting even sicker. I got painful lymph nodes, a sore throat. My arms were very weak. My legs wouldn’t work. I couldn’t walk.
My parents live in Connecticut at the time. I immediately came back here, and I’ve been in bed ever since. At my worst, I was in the dark unable to move from the neck down, just with full-time caregivers, and I literally couldn’t even move a finger like this. I couldn’t speak, and people could barely speak to me because of the stimulation sensitivity, the noise sensitivity, the light sensitivity. Luckily, I was able to get outta that after about two and a half years, and that’s when I started to learn more about the disease. I was just horrified by the way that people with the disease were treated in this country for decades. Obviously, I’m biased, ’cause I have the disease, so I think the history is interesting. But the more I learned, the more I was just objectively horrified by the way that these people, with a neuro immune, neuroinflammatory disease that’s very serious, are brushed off as just being lazy, being tired, being in bed. And it made me angry, honestly. It made me inspired, but it made me angry, and that’s when I decided to start notjustfatigue.org.
Alycia Anderson: So incredible. There’s so many takeaways there. Number one, I love that you just said the history made you curious, and I think that we all need to be curious about history of all of our disabilities and the history of the movement. So I love that’s been a driver.
I don’t love that you had to, but I do love that you took the advocacy into your own hands to figure out what the heck is going on and to find a path towards not only finding your path, but i’m assuming, and we’re gonna get to it, led to the education. The advocacy that you’re doing is so incredible.
That word fatigue is, I think, failing you to capture the layers of depth that you’re dealing with. Can you talk about that a little bit? Maybe talk about what a high impact day looks like in your world today.
Elizabeth Ansell: Yeah, absolutely. Like I said, just to talk about the words, ME/CFS, more. It stands for myalgic encephalomyelitis, and this was a term that the World Health Organization came up with for the disease in 1969. So they recognized it then. But what happened afterward is these British psychiatrists thought most of the people with this disease are women, and we think it’s psychosomatic.
And then after that, the disease just couldn’t really shake that. In 1988, the CDC decided to name the disease in America, chronic fatigue syndrome, saying the hallmark symptom is fatigue. But as I pointed out, the hallmark symptom is really post exertional malaise, that if you exert yourself, your symptoms kind of explode, and there’s as many as 60 different symptoms.
Mine are very neurological in nature, but, obviously, people have different combinations of things. So that’s explanation with the name. The government currently refers to it as ME slash CFS. And I think a big part of that is we know a lot more now, in terms of research, and how all your body systems are affected, and how most people consider it a neuroimmune and neuroinflammatory disease, but we don’t really know the exact cause of it.
Some people consider that a placeholder name. Some people just wanna take ME and run with it. So that’s a issue. It depends who you talk to and their opinion on it. But in terms of fatigue, it’s a total misnomer. It’s a total just misbranding of the disease. It’s like a branding failure, honestly. So, in terms of what I experience, say when I have a crash. Right now, I’m living in my energy limit. Say this is my energy limit. I’m right here comfortable, so I’m not experiencing symptoms. But if I were to go over that, either physically, mentally, or emotionally, I would get painful lymph nodes.
I would get a very sore throat. My arms would start to become very weak. My lips would start to become very weak. I would not be able to eat anymore. I would have to be fed liquids. Just because I couldn’t chew, the actual chewing motion would be too much. I would become noise and light sensitive.
I’d have to be in the dark. And I basically would hardly be able to move at all. That’s the thing with the crash. It could last days, it could last weeks, it could last months. It could be permanent. Nobody really knows enough at this point to know why that is. But people with the disease know that’s the case. So you’re always trying to live in your energy limit. So when I improved and was able to start notjustfatigue.org, I was living in my energy limit. But that’s why it took me six and a half years to finally launch, which is a ridiculously long time. But I guess I just was so determined because, again, I was so horrified by the history of the disease and the state of the disease. I really believe that, “Yeah, we can’t change the past with what’s happened with this disease, but if we work now today, we can change the future.” So that was important to me.
Alycia Anderson: This advocacy, from a chronic illness standpoint, let’s talk about that a little bit. Because I know from the work that I do, too, is this non-apparent disability, the hidden disability, the stigma that’s attached to it, the assumptions of what people think is going on versus not.
Can you talk a little bit just about that? What are people missing? Where do we need to change this as well?
Elizabeth Ansell: I think so much of it goes back to, again, the name chronic fatigue syndrome, and how people think you’re fatigued. There are levels of this disease, mild, moderate, severe, and very severe. I would consider myself severe at this point. When I was mild or moderate, I would get comments like, “You don’t look sick,” or”You look so good,” or something like that. Even if you’re mildly or moderately affected, it’s still having a massive impact on your quality of life. So I found that offensive, honestly, like many people do. At this point, I’m in the bed, so you can’t really deny it so much. But at the same time, I’ll get comments from people like, “So you’re just tired.”
And I’m like, “No.” And it’s not tired. It’s not laziness. Again, it’s this full neuro immune, neuroinflammatory disease that we have more research on now, but we want the funding to be able to find out more, to be able to have treatments to make people’s quality of life better. So that’s a big part of what we’re fighting for, but that’s also, in terms of, just misconceptions and stuff.
Alycia Anderson: Let’s talk about what you’re fighting for. I know you’re doing a lot of federal policy advocacy. Can you give us a little overview of the work you’re actually doing?
Elizabeth Ansell: I think that, again, it’s been so long, like decades, that people with ME/CFS have been treated like this. A big part of it is that maybe if you have a different disease, you’re able to go to Washington and people are able to see it or something. Again, that goes back into invisible versus visible illness, and disability and stuff. I think there are some that are way more visible because people are going to Washington. Very few people with ME/CFS, maybe if you’re mild or moderate you can, but I absolutely cannot go to Washington. With technology, though, and these congressional staffers from my understanding, ever since COVID, using the meetings and doing them online via Teams or something, you’re able to actually meet with them.
I’ve met with so many people in so many offices, from my bed, like I’m doing with you right now. Because that’s the thing, I can’t go anywhere. I’m home bound and bed bound most of the time. That’s a big thing in terms of the advocacy, something that changed and allowed for that. There are two things that are really big accomplishments of ours that I would say, and the Senate appropriations language. We got ME/CFS included in the Long COVID Recovery Initiative, which is initiative with a lot of money in it, and a lot of people with long COVID fit the case definition for ME/CFS.
At this point, we don’t know. Are these sister illnesses, are they cousins? Are they the same? Does some parts of long COVID result in ME/CFS? We’re not sure. But having that language in there opens the door for researchers to potentially tap that money. So we were really proud to do that.
Another thing we did is we partnered with an organization called #MEAction, for the ME/CFS research roadmap. So it’s not uncommon to create on a federal level, a roadmap for a disease. The issue is the ME/CFS research roadmap was created in 2024, and has absolutely no funding attached to it. How do you get this done if there’s no funding attached? So we were able to get the language in there, that the NIH has to report back in 180 days for a plan to implement it. And then this year in 2026, we’re also working with #MEAction, again, for international ME/CFS Day. So we’re talking about getting $50 million attached to that.
Alycia Anderson: Amazing. Side note, we’re gonna launch this that week. That’s incredible.
Elizabeth Ansell: That’s so great.
Alycia Anderson: Congratulations.
Elizabeth Ansell: Thank you.
Alycia Anderson: Talk about putting a stamp on something and being a leader in a movement. It’s obviously not new because you gave us a history, but becoming recognized. That’s so incredible. Congratulations.
Elizabeth Ansell: No, thank you so much. Honestly, I’ve suffered with this disease. I’ve suffered from it horribly, but I connect with so many people on the internet, on all social media channels, or forums, and stuff. Other people who are isolated in their homes, isolated with ME/CFS, they tell me these stories, too. So when I’m telling you my story, it’s not just my story, it’s everyone with ME/CFS’s story, and the advocacy is also theirs, too. And I feel really strongly about that just because it always amazes me. I think I’ve gone through something, and then I talk to someone else online that I met on Twitter and they tell me their stories, and I’m like, “Oh my God, mine are similar, but this is awful.”
And again, the system is not set up for this disease, and it really needs to be through education, and advocacy, and education of the general public, but also individual doctors and healthcare workers. There’s so much room in this space to create change and that we need done. So this certainly isn’t a small project.
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Alycia Anderson: I love what you just said about coming together with our community online. My disability’s pretty rare, too. I recently just met a woman that has the same disability. I was able to sit on a conversation with her and us talk about things like our bladder, or how our knees are. It feels good to be able to cross reference something that you, oftentimes, feel alone in. I love that you just shared that because it’s really powerful. And then building your community of people that are home, in bed. That’s so incredibly powerful, too.
I can’t even imagine the conversations and the community that you’re building in that, as well, because I’m sure that feels lonely sometimes.
Elizabeth Ansell: Just to clarify, it’s not actually a rare disease. The CDC estimates 3.3 million Americans. Independent rates says 9 million Americans. The issue is that 90% of people aren’t diagnosed. They don’t know what they have, because, again, healthcare workers aren’t trained to diagnose them, they don’t learn about this in med school.
They don’t learn about it in nursing school, so that leaves 90% of people undiagnosed, which is a hard percentage to swallow. So that’s, again, why education and the advocacy is so important. You need to have the diagnosis to be able to, I think, identify with that, and also maybe identify with a group of people, we were talking about getting online and stuff. I love getting online just because, again, I can talk to all these people who have gone through the same thing I have. Whereas, my friends from before I got sick, they have no idea. I’m trying to teach them, obviously, through the advocacy work with #NotJustFatigue and notjustfatigue.org. But that’s very different from experiencing the disease yourself, I think.
Alycia Anderson: Totally. I agree. What does that life look like? You go from your, I’m air quoting, old life to your new path forward. How do you translate that realization, not only within your own personal path, but you just mentioned, the people around you? What does that look like?
Elizabeth Ansell: I’m not gonna lie. It’s really difficult. Because there’s a lot of grief involved. I think grieving what you thought maybe the future would be. But I am a big believer that when a door closes, another one opens. I’m also a big believer in agency. So once I got better enough to have that agency for myself, again, that’s a big part of the reason I started #NotJustFatigue. Because I learned about this group of people that had been disregarded by the medical system, by the federal government, and I thought maybe I have a skillset that we can do something here, just because this is a situation that’s fixable if we put the time and money into it. I think it was really hard. But like I said, it’s been 10 years now, and you definitely see silver linings in things. I know that I’ve changed a lot, I know for the better, just in terms of who I am as a person. I think I’m so much more determined, and so much more empathetic, and so much more inquisitive about different types of people with different illnesses, with different disabilities.
There are definitely things that have come out of this that I’m proud of, absolutely, as who I am.
Alycia Anderson: And may I add to that? You’re also articulated. And the way that you talk through these things is very, not only intellectual, but calming. It’s really good. And I had that word written down, grief, because I can imagine that there has been, and I’m assuming it comes in and out.
It’s part of your existence, just as it is with mine in other ways. But I think that’s a powerful way to look at it is, “Okay, I have this new path and you’re making incredible impact.”
Elizabeth Ansell: Grief is definitely, I think, a big part of chronic illness and it comes in waves. I know that’s a cliche to say, but it’s absolutely the truth. For me, this past April was 10 years in bed and that was hard. That kind of triggered those grief feelings and stuff.
So I’m like, “All right, let’s get May to come along for M-E-C-F-S Day, May 12th,” which I always find super inspiring. The community really comes together online, and shares their stories, and ask people in the government and stuff. So that’s a big inspiring day. I was feeling down or feeling the grief in April, and I was like, “I have the ME/CFS day coming up, May 12th.” That’s something to look forward to, honestly.
Alycia Anderson: If people wanna get involved on that day, what does that look like?
Elizabeth Ansell: Like I said, we’ve partnered with a group called #MEAction a few times. They call their day hashtag, “millions missing.” Just about the millions of people who are missing from their lives, and I think they’re a great organization. I also think another group called Solve ME is a great organization. And a lot of times, people will get online and use the hashtag, or other hashtags as well, and tell their story, like how they maybe got a virus, and then experienced symptoms, and developed this disease. The same story I’m telling that doctors didn’t take them seriously, didn’t diagnose them. We need the funding. We need the research, we need the treatments. So people really get online, like on Twitter and Instagram, TikTok, everywhere, and tell their stories. Because this disease isolates you so much, if you’re severe, if you’re homebound or if you’re bed bound, that community and seeing it, I always find very inspiring. I really do.
Alycia Anderson: That hashtag, “millions missing,” hit my gut. That is such a statement right there. Wow. Incredible.
Elizabeth Ansell: Yeah, definitely. It’s importantbecause there are millions of people, isolated in their homes, around the world dealing with this same thing that I’m describing. And we need help. We need help, we need the money, we need the education. It’s these same things.
When looking into the history that baffled me, because I thought like, “Why aren’t we doing something?” I think social media allows people to get out of that darkness, and put your story forward, and become part of that community, and tell those things.
Alycia Anderson: Yeah. That’s how you and I found each other. Like I was saying when we started, I was so happy that the algorithm crossed our paths. Your advocacy is extremely important, obviously, just well done. If somebody is going through this right now, maybe they’re going through their first stages of how it was for you 10 years ago, what’s the advice that you would give them?
Elizabeth Ansell: I think it would be stay determined, honestly, is the biggest thing. I’ve gone through so many doctors not knowing, or misdiagnoses or whatever, and in terms of my mental state as well, I think just keep going, stay determined. I think we’re really at a crossroads with this disease and I do have hope.
Absolutely. For things to change,now is the time that I think it’s happening. I really do. Just from the advocacy work that we’ve done, but also other groups have done. I feel very hopeful and united as it currently stands. I’d say be determined and get online, and connect with other people, so that you don’t feel so alone. And maybe get involved in some of the work that people are doing.
I know that we pull in with our different calls, people from different congressional districts and they tell their stories to congressional staffers. I just think having that purpose of a better future really gives people something to hold onto. I know it has with me.
Alycia Anderson: I love that. Okay. So you said get involved. How do we get involved? How do we support you? How do we get involved with your work, your platform, all the things?
Elizabeth Ansell: Yeah. Like I said, May 12th is coming up, so if someone has ME/CFS, share your story online. But also, just in terms of what we’re doing, if you’re a member of the general public, I think to be an ally is important. We have a lot of social media posts that we supply on our website, different facts. If you’re not in this illness world, you might find shocking. So you can share those facts and figures. You can share the website with your network as well. So a lot of this is social media stuff, but we also are a 5 0 1 c3, so you have the ability to donate on our website.
Alycia Anderson: Amazing. We’re gonna leave all the links to all that, to be easy, clickable, in the show notes. Did we miss anything?
Elizabeth Ansell: I think we covered a lot.
Alycia Anderson: Thank you for doing this. Absolutely amazing story. I warned you before we wrap up, I will ask you a pushing forward moment. If we didn’t miss anything monumental that we need, this was fascinating for me. Absolutely fascinating.
Elizabeth Ansell: No, I think we got a lot of good stuff.
Alycia Anderson: Okay, then enter the pushing forward moment. Do you have a little advice, or mantra, or something that helps you stay motivated?
Elizabeth Ansell: Pushing forward is interesting because when it comes to this disease, you can’t push. How I said is you can’t go over your energy limit. You have to stay in that energy limit. So that verb, you don’t hear that often, but obviously I know what you mean. My moment, in terms of my history, would really be when I improved from being very severe and learned about it, and wanted to take agency back in my life. I had absolutely no agency at that point. I had been in a dark room. I had full-time caregivers, and I wanted to take some of that back, and I wanted to push forward to the future.
Because as I said, it’s very sad we can’t change the past with this disease. But right now in the present, we can work for a better future. I think that’s it for me. Yeah.
Alycia Anderson: That’s beautiful. Thank you for all the work that you’re doing for our world. This is a big deal. You’re making your mark, and I don’t know what else any of us could do in our lives, other than that. Well done, sister, to the stars of impact, for so many people. Thank you for everything that you’re doing, genuinely.
Elizabeth Ansell: Yeah, no, of course. Again, it’s been great to be on this podcast and share all this with you. I appreciate the opportunity. Absolutely.
Alycia Anderson: Yeah. Okay. And this is just the beginning for us. I’m so happy our paths have crossed. All right, everybody. Follow Elizabeth, support her work, reach out to her, and use all of these amazing resources that she has on her website. This has been another episode of Pushing Forward with Alycia. Please share this episode.
I think it will help a lot of people. Pushing forward is what we do on this podcast and it’s how we roll. Thank you for showing up and we will see you next week.