What can we learn about chronic fatigue syndrome by listening to the people who actually recovered from it? In this episode, host Daniel Lyman sits down with two researchers who set out to answer exactly that question. Julie Harper conducted in-depth interviews with eight women who recovered from ME/CFS after struggling with it herself for seven years. Dr. Sarah Cefai analyzed 75 recovery stories from Raelan Agle's YouTube channel, looking for the patterns that kept showing up across very different people and very different journeys. What they found has a lot in common with what pain reprocessing therapy sees again and again: a shift in how symptoms are understood, a growing sense of agency, and a different relationship with the body. If you or someone you love has been told that chronic fatigue syndrome is something you just have to learn to live with, this episode is for you.
For many people with ME/CFS, the message from the medical system has been consistent and discouraging: there is no cure, manage your symptoms, adjust your expectations.
But what happens when researchers stop asking doctors what recovery looks like and start asking the people who actually recovered?
In this episode, host Daniel Lyman talks with two researchers who did exactly that.
Julie Harper struggled with chronic fatigue syndrome for seven years before recovering through a mind-body approach. That experience led her to pursue a master's in psychology and conduct qualitative research interviews with eight women who had also recovered from ME/CFS. Her study asked two questions: what does recovery actually mean to people who have been through it, and how did they get there?
What she found was four recurring themes across the women she interviewed, two foundational and two active.
The foundational elements were a recovery mindset, meaning a belief that getting better was possible and a sense of personal agency, and an explanatory narrative, a new way of understanding why symptoms developed and why they persisted.
The active elements were approaching symptoms differently, without fear and without treating every sensation as evidence of damage, and addressing the root causes, the emotional patterns, relational dynamics, and ways of living that may have contributed to the illness in the first place.
Perhaps just as striking was what recovery meant to these women once they were on the other side. Not a return to their old lives, but something better. A different relationship with their bodies. And a confidence that even if symptoms returned, they would know exactly what to do.
Dr. Sarah Cefai is a senior lecturer in gender and cultural studies at Goldsmiths, University of London. Her study analyzed 75 recovery interviews from Raelan Agle's YouTube channel, looking not just at what people said helped them, but at the larger story of how people move from illness to recovery.
Across 75 very different stories, a few things kept showing up. Ninety-five percent of participants described a mind-body shift in how they understood their symptoms as a turning point in their recovery. Eighty-four percent spoke specifically about nervous system regulation. And nearly everyone described a moment, not always dramatic, where they made a decision to keep looking for a way forward, even when the medical system had told them there wasn't one.
Dr. Cefai is also honest about what the research can and cannot tell us. The people represented in these stories are not everyone with ME/CFS. But the patterns are real, and they point somewhere useful.
Both researchers arrive at the same place: recovery is possible, it tends to involve a shift in how you understand your symptoms, and the stories of people who have gotten better are worth listening to carefully.
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Daniel: Welcome back to the Pain Reprocessing Therapy Podcast. I'm your host, Daniel Lyman. I'm a psychotherapist, uh, executive director of the Mind Body Therapy Center, and a certified PRT practitioner. Each episode of this podcast, we explore the science and practice of recovery from chronic pain and other neuroplastic symptoms through conversation with clinicians, researchers, and people who have experienced recovery themselves.
Today, we're going to continue talking about something that I think is really important, recovery from ME/CFS. For anyone who isn't familiar with ME/CFS, it stands for myalgic encephalomyelitis or chronic fatigue syndrome. It's a complex multi-system illness that can be profoundly disabling. People with ME/CFS can experience severe fatigue, problems with sleep and cognition, pain, dizziness, and other symptoms.
And one of the defining features is what's called post-exertional malaise, or PEM, which is a significant [00:01:00] worsening of symptoms following physical, cognitive, or emotional exertion So if you're curious about what therapy with a CFS patient sounds like, make sure to go back and listen to that episode.
ME/CFS is not a rare condition. According to the CDC, about one point three percent of US adults have ME/CFS. That's roughly three point four million people. And that number likely underestimates the true prevalence because the CDC's estimate only includes people who have received a diagnosis, and many people with ME/CFS remain undiagnosed.
Despite how common and disabling this illness is, there is still a tremendous amount we don't understand about it, including, importantly, how people recover. And that's what we're going to explore in today's episode. Rather than looking at recovery from a purely theoretical or clinical perspective, today's episode focuses on the stories of people who have actually recovered.
I have two really fascinating interviews for you today. First, I speak with Julie Harper, who conducted a qualitative [00:02:00] research study based on interviews with eight women who have recovered from ME/CFS. Julie herself had struggled with it for seven years, and her own recovery ultimately led her to pursue this research.
And her study looked at two big questions: What does recovery actually mean to people who have recovered, and how did they recover? My second interview today will be talking with Dr. Sarah Cefai about her researcher, research analyzing seventy-five recovery interviews from Raelan Agle’s YouTube channel.
And when you're looking at that many stories, you start to see some really interesting patterns. What's particularly striking to me about both these studies is how much overlap there is with what we see in pain reprocessing therapy. Changes in how people understand their symptoms, a sense that recovery is possible, developing a sense of agency, feeling safer in their bodies, and ultimately changing their relationship with the symptoms.
And at the same time, both researchers highlight some really important nuances and differences between [00:03:00] individual recovery stories. So in this episode, we're gonna take a look at what these recovery stories can teach us and what we might be missing when we only look at illness through a tradit- traditional medical lens.
As I said, first up is Julie Harper. Julie is a researcher and health recovery coach from London. She is fully recovered from CFS after, after seven years. She now researches recovery from chronic illness and supports people to recover from chronic conditions. You can find her at revivifywellbeing.com.
Let's get into it. Okay, so first of all, thank you so much for being on the podcast. Again, I really, really appreciate it. Um, your, uh, paper came across my desk from Mark Lumley, and I popped it open and I was like, "Oh, this is really interesting stuff here, and really closely aligns with, uh, what a lot of pain reprocessing therapy is about."
Mm-hmm. But let's get into the paper itself. I wanted to let you know how I got to it. So, uh, I'd love to start with what motivated you to do this research?
Julie: Um, so I was ill for seven years [00:04:00] with- Okay ... chronic fatigue syndrome. Okay. And I spent five of those years trying to work out how to recover.
Daniel: Yeah.
Julie: And at the end of those five years, I read Howard Schubiner's book, Unlearn Your Pain.
Mm-hmm. I substituted the word pain for fatigue. Yeah. And within eight weeks, I was what I would call fully recovered. Um- Incredible ... yes. I mean, I'd done a lot of kind of the emotional work before I'd read the book, but that was the key for me to understand that my symptoms weren't hurting me. They weren't a dangerous thing.
Daniel: Yeah. Mm-hmm.
Julie: Um, I wasn't just gonna get worse and worse. And so when I recovered, I was like, "What am I gonna do next with my life?" 'Cause I'd quit my job five years previously. Um- Yeah ... and I, uh, I enrolled on a master's in psychology, and I- Love it ... needed to do a dissertation, and we could do whatever we wanted, so I [00:05:00] chose to do something about recovery from ME/CFS, and this is the result of all of that thinking and all of that work, and, um, yeah, my eight interviews with women who have recovered from ME/CFS.
Daniel: Great. So you conducted these eight interviews, compiled them, and looked for commonalities within these eight women as to what potentially or what most likely yielded their recovery. Is that right?
Julie: Yes. Yes.
Daniel: Okay.
Julie: That's, that's it in a nutshell.
Daniel: Yeah. So talk us through how you got in contact with these women and how you, how you conducted the interviews.
Julie: Okay. So, um, I actually decided to contact people who had shared their recovery story on Raelan Agle's YouTube channel. I also chose women who n- now support other people to recover as well.
Daniel: Mm-hmm.
Julie: So to show that they're c- they have confidence in their recovery. It's not a flash in the pan thing, that they [00:06:00] know that they are there and they are recovered.
Daniel: What were you hoping to find out when you started to do these interviews, or what were you looking for?
Julie: So I had two questions that I was trying to answer. One is- Firstly, what does recovery mean to them?
Daniel: Yeah. '
Julie: Cause when I was looking- Love that ... at the literature, um, recovery is either, um, explained by, uh, medical professionals and clinicians, or it's defined by people who have yet to recover.
And actually- Yeah ... there's nothing in the academic literature which says, this is how people who have recovered recover. So I thought that was question number one, was what did recovery mean to them? What, what is
Daniel: recovery? What does it mean to them? What is recovery? Was, um- I love that. Yeah.
Julie: Yeah. Mm-hmm. What is that?
Um, and then the second thing was, okay, what, how did these women recover? Yeah. Um, and I came up with [00:07:00] four themes There were two what I called foundational themes. The first one being, um, the development of a recovery mindset, or even the cultivation of a recovery mindset-
Daniel: Mm-hmm ...
Julie: um, which I can explain a bit in a moment.
The second one was, um, an, an explanatory narrative for their- Yes ... symptoms. So this is how did they come to understand the development of their symptoms and why their symptoms were still there? And those two foundations then lead on to the active recovery methods, the two things- Mm-hmm ... which people did actively.
First one was approaching their symptoms differently. Uh-huh. So whether it was through using brain retraining or something else, it was a way of not being scared of their symptoms, not having any fear of them.
Daniel: Yes.
Julie: Fantastic. Um, [00:08:00] and understanding that they weren't signs of physical damage as well. So there was something about how they approached their symptoms differently to how they had as, as they were ill.
The second active recovery method was addressing the root causes. Of course. Yeah. So when we talk about the explanatory narrative, the ex- there was an explanation of why they got ill.
Daniel: Uh-huh.
Julie: Um, and, and with quite a few people, there was something to do with the way that they were living their life or dealing with their emotions- Mm
which had led to their symptoms. And so addressing those root causes-
Daniel: Yep ...
Julie: um, was, was an important key to their recovery. So yeah, two, two things which were the foundation, and the two things which were the,
Daniel: the- Active recovery
Julie: That's right.
Daniel: Yeah. Oh, I love the way you break this down. So the foundational elements meaning, like, a shift in understanding [00:09:00] in many ways.
Mm-hmm. And then the active recovery, like, what do we do at that point?
Julie: Yes,
Daniel: absolutely. Is that how you... Is that right? Okay. Yeah, because people are oftentimes asking, of course, when they start this process or looking for help in healing, like, "What do I do?" And we try to have to pull them back a little bit and say, like, "Actually, the mindset shift kind of needs to come first, and then we can go into what to do after that."
Mm-hmm. So l- let's talk about that, though. There was the mindset shift and the, you know, attribution of symptoms here. So w- talk about if you can get more specific on the recovery mindset. I'd love to hear about that.
Julie: The mindset, I think there were four things there. One was belief that recovery was possible Um, because there are lots of people who are told it's not.
Daniel: Right.
Julie: Um, and the women that I interviewed, they just didn't believe those people. They weren't going to accept that there was no chance of recovery. The other thing was about hope. [00:10:00] Mm. Hope that they could find the way of recovering. And, and the, the belief and the hope actually were, were not always constant.
Daniel: Yeah.
Julie: Um, and one of the participants, she actually said that, that she'd asked h- uh, someone else to hold on to her hope for her when she was- Mm-hmm ... having a tough time, so that then she could take it back when she was feeling better.
Daniel: I've heard that from clients too. I find that very sweet. Yes.
Julie: Mm-hmm.
Daniel: Mm-hmm.
Julie: Absolutely. Um, and then there was something about positivity, um, um, and feeling positive about making that effort, because there is quite a lot of effort which, um, which a lot of ME/CFS, people living with ME/CFS go through, because you've got to try so many things before you find the, the final thing. Of course.
And so for them, th- that was the, despite the setbacks, having that positivity. And then the final one, which all of those three things led to, was [00:11:00] agency. Mm-hmm. So I have the power within myself- To be able to find whatever solution it is to my symptoms and be able to actually recover.
Daniel: If you don't mind me asking, as you were learning this, were you seeing your own recovery as well?
Were you saying, "Oh, yeah, that's... I was able to do that as well," or, "I had a hard time with this bit"?
Julie: Yes. There were, there were a lot of things which were similar, but there were a lot of things which were different, and not everyone had the same, the same story or the same, um, had done exactly the same things.
And I th- and I also made sure that I stood back and made sure that I wasn't writing my experience because- Mm-hmm ... otherwise it is is not a very- Of course ... good academic paper. Oh, of course. But I- Of course ... um, and so I really questioned myself, especially when people didn't answer a question in the same way that I thought they might.
Mm-hmm. Um, um, but, and one of the [00:12:00] things, um, actually changed my view as well, which was re- which was really good to hear. So, um- Okay ... so although I, there were echoes of what I did, um, 'cause I think we've all done a very, taken a, a similar set of steps, um, there was no chance of me enforcing my recovery journey on the research that I was doing.
Daniel: Yeah. Good. Good. I mean, it's, it's, I'm glad you had that objective mindset, but I'm sure of course there were moments where you were like, "Oh, I relate to this." Yeah. "This is, this feels very true to my story as well." Yeah. Mm-hmm. I- in pain reprocessing therapy, as you may know, we talk a lot about pain reattribution or symptom reattribution.
Mm-hmm. And that is taking a different perspective on what is causing or triggering our symptoms. And for, you know, whether it be with back pain or migraines or CFS or whatever, oftentimes we have these stories in our minds that, "Oh, there's something structurally wrong with my body. Uh, I am broken in a certain way."
Mm-hmm. "Uh, and therefore it is hard for me to recover." You know, the, [00:13:00] the second kind of foundational element that you found was an explanatory na- uh, narrative about the perpetuation of the illness. A change in that was really important for people.
Julie: Mm-hmm. Can
Daniel: you talk a little bit more- Yes ... about that?
Julie: Yes.
Um, so I think there was a shift in symptoms being a sign of needing to rest or needing to stop or that there was something wrong into, for some people it was, "This is a message- Yeah ... from my mind to my body- Mm ... 'cause my mind can't tell me stuff, and my body can't tell me stuff." Yeah. And it's just a way of alerting you to the fact that there's, there's something which is slightly awry.
Um, but then there was also the understanding that we can get stuck in the cycle of expecting to feel bad after activity or whatever it might be. And so breaking [00:14:00] that expectation that you're going to feel- Yeah ... bad because you've, I don't know, walked to the shops or whatever it might be.
Daniel: Right. Right.
Julie: Um, there was also, um, an understanding of, um, nervous system dysregulation, being stuck in the stress response, which came up with many of the participants.
The mind-body connection, though, was so very, very important, and I asked each of them, is it, do you think ME/CFS is a problem with the mind? Is it a psychological thing? Mm. Is it a problem with the body? Is it a biological thing, or is it a bit of both? And there was this, this unanimous understanding of the fact that your mind and your body work in concert.
They work together.
Daniel: Yes.
Julie: And so,
Daniel: um- Music to my ears, Julie.
Julie: Yes. It's because it, it's just so true.
Daniel: Exactly,
Julie: yeah. Um, and the, and the other thing was each of the narratives were [00:15:00] quite personal. It was finding the key for that particular individual, and also it was the way that it was explained to them which was important as well.
Um, one-
Daniel: From a, from a practitioner or, or-
Julie: Or wherever, yes, wherever they heard or read it.
Daniel: Got it. Okay.
Julie: They, there was, I think one person said, "Are you gonna tell me something or are you gonna educate me?"
Daniel: Mm, mm, interesting.
Julie: Um, that was the way that they wanted to hear about it because I think for so many people, they've been to medical professionals who haven't talked to them in a compassionate and, uh, compassionate way, and it's c- can be quite paternalistic.
For sure. I am professional and I know what the answer is. Obviously, not everyone's like that, but it has been the experience of a number of the, um, uh, a number of- For
Daniel: sure. E- especially in this particular population, I would argue, women with CFS [00:16:00] being talked down to by the medical community. So that's that much more important to not feel pa- have it be paternalistic.
Julie: Mm.
Daniel: Mm.
Julie: Absolutely.
Daniel: So can I ask about, stepping back here, about the expectation? And I'm curious if you got into this in your interviews, if people are expecting to feel fatigue, to feel run down after going to the shops, whatever. Um, you talked about breaking that expectation or changing that. Now, how did people do that?
Julie: So this didn't come up a lot because- Okay ... the, the main theme was people talking about how it was a message or- Mm ... a messenger. Um, but one of them, um, she had used a, quite a famous technique, and she s- she basically used that technique to say, "There's no reason I should feel tired now." And I can't remember exactly, but I think there might have been some affirmations or something like that which were- Okay
[00:17:00] being repeated to say- Yeah ... "I'm fine. I'm, um, there's no reason why," I'm sure it was said in a more positive way, "there's no reason why- Right. Yeah ... I should, should cause, should cause symptoms." Um- Yeah ... yeah, and she, she had recovered within two weeks. So she was a- Incredible,
Daniel: two weeks.
Julie: It, it is incredible.
Yeah, that was, that was the thing about, um, your, your body and your mind, and I did some, um, some study of this during my master's. Um, but it, how we do predictive coding in our life all of the time-
Daniel: Constantly, yeah ... um,
Julie: in order to make sure that our brains don't explode through the amount of new information that we're processing all the time.
Mm, for sure. Um, and, and sometimes that works, and sometimes it doesn't. Mm-hmm. And, and that will happen if we think that we see our friend in the street, give them a wave, and they get closer and it's not them. Um, [00:18:00] and that's not a bad, that's not a bad thing. It might be a little embarrassing that you've- Yeah
you've waved at someone else. Um, but when we're talking about ME/CFS, I think there's this, your predictive coding's gone a bit awry, and that can be seen as victim blaming or whatever it is, and it's just not. It's just how our bodies and minds work.
Daniel: Yes, absolutely. It's not victim blaming. I, I completely agree with you here.
Predictive coding, we're, we're constantly in a space of predictive coding, and sometimes our brains are just doing it a little bit, we're a little more overactive with it, and that's just being human.
Julie: Mm-hmm.
Daniel: That's just being human. So you touched on this a little bit, but walking away from this, uh, from this research, were there any, was there anything that really surprised you, that you thought, "Oh my gosh, I did not expect this at all"?
Julie: I really didn't have that many surprises, I suppose because it chimed with my recovery so much, and because I'd also listened to so many of Raelan Agle's [00:19:00] recovery stories.
Daniel: Uh-huh. Yep.
Julie: Um, I, I think, yes, it was- It was what is now becoming much more common knowledge of, of how to recover from ME/CFS.
Daniel: Yeah.
That's awesome. Um, I know Rae Lynn's helped a lot of people with her podcasts or with her videos and podcasts and everything like that, and so I'm glad that, uh, I'm glad that that word is getting out there. She's doing a great job of getting the word out there.
Julie: Absolutely.
Daniel: J- Julie, what, uh, anything else before we wrap up here?
Anything else that you feel like you really wanna share with the audience about this particular research?
Julie: I think there is something which I haven't really mentioned a lot, which is about that sense of safety, um, which is important both in the, a personal sense of safety, so reducing the stress response, and then a sense of safety in your [00:20:00] environment.
And there's something about lots of people talked about, um, put- putting up boundaries in their lives with particularly- Yeah ... people, other people. There was also something about not focusing on the illness. Mm-hmm. Um, quite a few people said that they either didn't talk to anybody about it or just came off social media and didn't take notice of people in the support groups which are not supportive for recovery.
Daniel: Yeah. Mm-hmm.
Julie: And there was also something about, I don't know, it was, it was... I think if you are in, in the midst of it, thinking about what recovery means, saying, "Oh, you might welcome your symptoms in future"- ... sounds complete anathema.
Daniel: Absolutely. Sounds terrible when you're in the middle of it.
Julie: Yeah. But there is, um, and then there's als- something about living your life [00:21:00] in alignment with something inside yourself rather than maybe what society is expecting.
So, um, authenticity is used I, as, as a word far too much, but I think- ... it is very applicable here about- Absolutely ... that authenticity. Um, and can I just have a couple of minutes on talking about what recovery means to people?
Daniel: Absolutely. I would love that.
Julie: So there were three main things about what recovery meant.
The first one was actually an upgraded life. Mm. They weren't going back to their previous lives. Uh-huh. Um, I always wanted to, to get better so I could go back to what I was doing, but actually, no, I've gone forward to something else. Yes.
Daniel: Even better. Uh-
Julie: Yeah ... uh, yes, absolutely. So having that upgraded life.
The second thing is about a different relationship with symptoms. Yes. So yeah, there's no constant fatigue, there's no [00:22:00] post-exertional malaise, there's no fear of symptoms. But actually, symptoms are welcomed because they're a sign of something not being quite right. Yes.
Daniel: Yes.
Julie: Um, so feeling very tired- Might mean that actually you've just been burning the candle at both ends.
Right. And you need to have rest, and that is something which, which everybody in normal life experiences, whether or not you've had ME/CFS at any point. You just- Of course ... you just think, "All right. Yes, I've been going out every night." Yeah. "I maybe need a couple of nights in." Um-
Daniel: Exactly ...
Julie: and the third thing was about confidence in recovery.
Mm. And that, for me, was really important, as I have a lovely, lovely quote from one of the participants, and I said, um, uh, as I asked everybody, "Do you think you might relapse?" And she said, "No, couldn't ever. Not [00:23:00] never, no." And she, she just spent a whole load of time saying there was no possibility of relapse-
because she knew what had caused her to become ill.
Daniel: Yeah.
Julie: And if she did all of those silly things again, she knew all the things that she needed to do to get better. Yeah. Um, so there was, yeah, that wonderful confidence in recovery, um, which, which I thought was so very important. And I think if you s- if you say those things to people who are feeling absolutely terrible, that you're gonna, you're gonna feel like you've got an upgraded life, you're gonna have a great relationship with your symptoms, and you're gonna be super confident you're never gonna get ill again, especially for people who've tried so many different things which haven't worked- Yes
they would laugh you out of the room. However, on the kind of the other side of recovery, you're able to see those things in such a different light. [00:24:00]
Daniel: I love that. That's awesome. Any final words for somebody who is listening to this who is struggling with ME/CFS themselves?
Julie: Recovery is possible.
Daniel: Love that. It really is.
We see it, we see it time and time again. Uh.
Julie: Yeah, I don't, I don't think, um, I can add any more to that. Recovery is possible. Um, there are plenty of methodologies that you can use. Um, I tried, I tried three before I read Dr. Schubiner's book, and it had the one thing which was the key for me. So don't despair, don't give up, and obviously, PRT or a, a form of that was the thing which really, really helped me in looking that I didn't need to be scared of my symptoms.
Daniel: And I swear I didn't pay her to say that, so Thank you so much, Julie. I really, really appreciate you coming on the podcast today and talking about your research. Thank you for all the hard work you put into it.
Julie: That's my [00:25:00] absolute pleasure. Thank you very much, Daniel.
Daniel: One of the things that stood out to me most was the idea that recovery isn't necessarily about doing one particular technique.
Instead, there seemed to be a deeper shift that happens first, a change in the way someone understands their symptoms, a belief that recovery is possible, and a sense that they have some agency in their own recovery. And then from that foundation, people begin to approach their symptoms differently and address some of the things that may have contributed to or even perpetuated their illness.
And Julie's research was based on eight interviews. But what happens when you take that same basic question, what can we learn from people who have recovered, and look at 75 recovery stories? That's exactly what Dr. Sarah Cefai set out to do. Dr. Cefai is a senior lecturer in gender and cultural studies at Goldsmiths, University of London, and the author of [00:26:00] Recovery Report, a study of 75 YouTube interviews about recovery from ME/CFS and related illnesses.
Her research focuses on emotion, feeling, and culture, and she brought that background to her analysis of these recovery stories. For her research, she analyzed 75 interviews from Raelan Agle’s Recovery Channel, looking not just at what people said helped them, but at the larger stories they were telling about illness, recovery, agency, medicine, and their relationship with their own bodies.
And I think you'll hear some really interesting parallels between these two studies, while also getting a somewhat different perspective on what these recovery stories can tell us. So let's jump into my conversation with Dr. Sarah Cefai. So Dr. Sarah Cefai, thank you so much for coming on the podcast.
I'm really glad to have you here, and I'm excited to talk with you about this r- latest research that you've done. Uh, and I guess I'll read the title here for people, and it's Recovery Report, What 75 YouTube Interviews Say About Recovery from Chronic Fatigue Syndrome and/or [00:27:00] Related Illnesses. So again, thanks for being on here.
Sarah: Thank you so much, Daniel. I'm really excited to be here, and thank you to everyone who's listening.
Daniel: Yeah. Okay, so let's just start off right away with what inspired this study? Why did you wanna research ME/CFS and look at these interviews?
Sarah: The academic answer is the gap in knowledge. Yeah. I was affected by CFS for the second time in my late 30s.
I was already an academic by then. Uh-huh. This was pre- c- pre-COVID. Um- Okay ... and I spent a couple of years doing the sort of functional medicine route. I went to a very good environmental medicine clinic, um, and that did actually really help me, like some of those kind of- Hmm ... um, things around allergy and kind of cleaning up your diet and all those kind of things, like I found that quite helpful.
But I was very much stuck two and a half years later, and that's- Hmm ... when I went online. But, but by then, COVID had happened, and I think the online community had changed a little bit. Like, people were- Definitely ... going onto YouTube more to say, you know, "Well, what's this? Is this long COVID?" [00:28:00] Um, and that's where I found Raelan Engel's Recovery Channel.
Um- Great ... and as soon as I started listening to her, the s- the interviews on there, I thought, "Wow, what, what is this?" Like, how can there be- This illness that I always understood as being quite, um, systemic in terms of- Yep ... what's happening in the body. And because I was down the functional medicine route, I was really interested in all the, uh, like, the minutiae of what's wrong with your biology and what's happening to your mitochondria, and all the- and I was using a lot of that language to kind of explain to people that, you know, I was actually really ill even though I-
Yeah
quote-unquote, "looked fine," because I didn't think I looked fine, but, you know, that's how I appeared to people. Um, so, so I did have that kind of ep- what, what the study calls the mindset change, um, quite- Mm-hmm ... early on when I started listening to people's stories. Because even though, like me, people did find a certain sort of protocols or lifestyle adjustments helpful, you know, they didn't really fully, right, regain their health and, and
Daniel: their lives.
Yeah. So- Just so people understand exactly [00:29:00] what this research was, is that you went on Raelan Agle's YouTube page. For those of you that are not- Yeah ... familiar with Raelan Agle, um, she's actually been on this podcast season one. But she hosts a YouTube show where she talks about recovery from ME/CFS, and other things as well, but largely from ME/CFS.
And she does recovery groups, and she does lots of interviews with people that have recovered, and that's what you researched, right? You watched- Yes, that's right ... 75 of those.
Sarah: That's right. So, so essentially I went through the formal process with my university of, um, an ethics, an ethics process where I said, "I want to analyze these recovery stories to talk about what people who have recovered or who have experienced, um, significant improvement in their symptoms say about how they got better."
And I just want to- Great ... I want to listen to what they're saying and see whether, from a social and cultural perspective, there's anything to be learned there. And perhaps whether there's anything that the wider community, including doctors, and policymakers, and other kinds of [00:30:00] researchers might also then learn.
So it did have this- Yes ... like, big aim at the beginning. So we, I went through the clearance, and then Raelan, um, and I wrote to all of the people that she had interviewed and said, you know, "I'm doing this study. Would you like to join?" And then- Yep ... from the people who said they wanted to be part of it, 7- I analyzed 75 of their, of their studies.
And then early on there were two big themes that struck me. They became themes because I heard them over and over again.
Daniel: Over and over, through all 75- In, yeah ... or through many of these- Yeah, yeah, yeah ... interviews. Okay. Great. Let's- Yeah ... so, you know, so you watched all of these interviews, which sounds like- Yeah
it took some time, and it can be quite heavy. Um, but these are recovery stories. These are people that are sharing their stories about what the, how they got better and what got them better- Yeah ... in their whole lives.
Sarah: Yeah.
Daniel: You said there are kind of two major themes that- Yeah ... came out of that.
Sarah: Yeah. The first- Most, most important finding from, from my perspective, and- Uh-huh
actually it's not a finding about how people got better, but it's a finding that lets people know that we should be doing more social and cultural research. Love it. And the [00:31:00] finding was is that there is consistency in what people say. If you sort of, like, um, look more deeply behind the sort of biographical idiosyncrasies around who people are and what they were doing, there are very consistent themes around, for example, overextension.
So people- Yeah ... pushing themselves too hard. Yeah. And of course, when you go into a particular community environment, people do share language in terms of reference, and it's true that perhaps the more we speak about these things, the more they become real things that people speak about. Of course. But on the other hand, you know, that happens because that's, that's a poi- place of resonance for a lot of people.
So, um, so the first part is that, you know, there are these consistencies in experience, and those consistencies are not to do with someone's opinion. Mm-hmm. Those consistencies, in my view, are to do with social structures. They're to do with social pressures. Um, they're to do with, like, how people get motivated by the family structure that they grow up in.[00:32:00]
They have particular kinds of ambitions. But they also have a very particular kind of physiology in terms of, like, you know, the nervous system. So, so in terms of the key findings, again, sorry it's not a finding about recovery, but we will get to those in just a second. Yeah. But, but one-
Daniel: No, but this is important first.
Yeah
Sarah: One of the, one of the findings is about people's experience of medicine. And, you know, if there's any, if there, there's any take home point from the study, it is about people's experience of medicine, which is, you know, it's to prepare people who maybe haven't gone yet to their medical appointment, you know-
Daniel: Yeah
Sarah: to have real expect, realistic expectations, especially if you're in a public health system, not only in the UK, but in other parts of Europe- Mm-hmm ... where you are going to be told by, by your doctor that there's nothing that they can do. Right. So I, I, you know, of, of course, the evidence of people who have recovered is that there's quite a bit that you can try and do, and it, and it might make a difference to you.
It's just that those things that you can try and do are not within the medical system. They're not what's called treatments. They're not-
Daniel: Exactly
Sarah: Yes. They're not, um, great places The standard
Daniel: medical system isn't equipped to help [00:33:00] you with them. Yes. Yes.
Sarah: It's not equipped. But interestingly, in these stories that I was listening to, I also looked at the narrative arc, so the way a story goes from A to B to C to get to D.
And that arc is both thematic in terms of when things tend to happen for people, but it's also affective in terms of highs and lows. So, um, typically, visiting the doctor is a real low point, and for many people- Yeah ... it's absolutely devastating and, and overwhelming. And it's very important that that's understood by the, by the medical establishment, because in my view, it's unnecessary.
I don't see any reason wh- any, any medical reason why doctors need to, a doctor needs to tell someone who's sitting in front of them that they won't recover, when in fact the doctor doesn't have empirical evidence for that person's non-recovery who's sitting in front of them. But what's, what's so interesting is that people talk about how the way they navigated through their lowest points, or what, what I'm terming rock bottom, following the language of many participants, is [00:34:00] that they, they got through that difficult time through making a decision, through finding a sense of agency and voice within themselves that was not about other people, not about into- their intimate lives.
It wasn't about the medical establishment. It was a kind of real conviction, um- Okay.
Daniel: Yeah ...
Sarah: that they absolutely had to get better, actually, no matter what
Daniel: they said. So, and, and what was the choice that, the, the choice that they made was that, "I will get better." Is that what you're saying? Or let's- So- ... let's break it down even more.
Sarah: Yeah. So actually, I avoid using the word choice- Okay ... because it's quite associated with neoliberal culture. Yep. Um, what I mean by that is it's associated a lot with, like, the ideas of a market and kind of- Yeah, mm-hmm ... you know. Whereas a decision, I think, you could say is a particular kind of choice. So I have a little one who's about to turn two, and, and when you parent, you see how early on it is that it becomes important to choose this thing and not that thing.
And- Absolutely ... and we, we kind of cultivate a sense of agency and who we are through deciding with this thing and not that thing, and we kind of go through that [00:35:00] throughout our lives. And even when we're talking about relationships that we're in later on, or what we want, how we want to earn money, or, you know.
And again, to go back to the social aspect, you know, I am sort of also talking very much in this middle class milieu. Like, uh- Yeah ... you know, uh, you know, people, people, working class people, or people who haven't been to university, people who aren't home-owning, who can't pay for private me- private healthcare, you know, those people are not represented in this demographic, you know?
And the research is also a call to do different kinds of research that, you know, do look at different kinds of, um- Demographics and communities. But yes, the de- the decision, but the, but I mean, it doesn't matter which class where you come from, you know, you w- you want to make decisions about your life, um- Yes,
Daniel: you want agency over your own life- Yeah
of course. Yeah. If you're feeling disempowered, we talk about this a lot- You feel, yes, yeah ... in PRT, is that a sense of disempowerment- Yes ... perpetuates this cycle. Absolutely. So having agency over your own life makes you feel-
Sarah: Absolutely ...
Daniel: m- much stronger in all the different ways.
Sarah: Abs- absolutely. Yeah. And, and what was [00:36:00] interesting about that dis- point of making a decision is that it was the follow-through, it was what happened next.
So many people then looked for help. Yeah. And that might have been, let's say someone knew a friend of a friend who recovered from long COVID, and that that friend had mentioned them, but they never reached out because they had a hesitancy around, you know, "Well, why would I do that?" Or maybe someone gave them a book and it's just been sitting on the shelf for, for six months because they aren't really sure why they'd read that.
Daniel: Of course. Right.
Sarah: So it was kind of a catalyst to actually reach out and be open to essentially mind-body ideas. Mm-hmm. So a, a key theme is that for, um, most participants in this particular cohort, um, they talk about coming across, discovering an explanation of their symptoms that made sense to them. And I was very careful when I was conducting my analysis to kind of not look for evidence for brain retraining because basically, you know, the recovery community's already doing that work.
It's al- it's already- Yeah ... representing, [00:37:00] you know, the efficacy of, of mind-body programs, um, to people who are affected by these symptoms. But, but what I, what I wanted to, to see was that like, you know, and again, it's interesting, it's a very interesting illness where, where a different way of thinking about the illness becomes a transformational moment for someone.
You know, why is that? Yeah. But then when I looked at that, okay, what's the idea that's actually represented in the transformational moment for everyone in that group, which is 95% of people, it was a mind-body paradigm. And then for 84% of people, they talked quite expressly about nervous system regulation.
Char.
Daniel: So what you're saying is 95% of the, of the interviews that you watched, the people from the interviews- Yes ... that you watched said that a, uh, mindset shift to mind-body understanding, it was a large part of their recovery. Is that correct?
Sarah: Yes. Yes. Exactly right. Yeah. Um- And that I didn't, I didn't look for that.
I looked for where people [00:38:00] were, found an idea transformational, and then I looked at what the idea was. And the idea was- Yeah ... consistently a mind-body idea. So for 100% of people, self-determination is the key theme linked to a recovery mindset. But
Daniel: with- Which also makes sense because you're listening to- Yeah
YouTube interviews from Raelen Eagle, who's, uh, pr- preaching- Yes ... a mind-body awareness, right? So- Yes ... it would make sense that a lot of people with these recovery stories would also have that.
Sarah: Well, I think that's where we are now, but I did- Okay ... recruit people going all the way back to 2020. And I have thought about this quite a lot because the sample is, of course, particular to people who've spoken on her channel, but then also agreed to have their accounts, um, included in a study- Right, in the study
by a researcher. Um, so but my take is that because of the medicalization of the illness as an effect of an organic- Uh-huh ... disease from which you don't recover Learning that in fact [00:39:00] your experience of illness might be driven by a slightly different set of terms that aren't exactly the ones that are well understood by medicine, it ends up constituting a mindset shift.
Mm-hmm. So even h- if you haven't gone down the route of kind of using your capacity to think in an intentional way to, um, intervene in some way in your experience of being symptomatic, the very realization that you could recover itself- Uh-huh ... is a catalyst for a- Yes ... mindset shift. That, that is- Yeah ... a complete sort of reorientation of your embodiment or your relation to yourself and your
Daniel: health.
Yeah, so and that's, that's important. So even just having the belief that recovery is possible can, can change things, can start, is the catalyst for the mindset change, as you said. So I wanna make sure we hit some really important points. If you are somebody with ME/CFS listening to this right now, what would you say to them, um, based upon the research [00:40:00] that you did here?
Based upon these, these interviews that you watched and studied, what would you say was the most important thing, or the two themes, we can re-hit those again if that's what you think they should know, but for somebody who's in recovery, what they, what should they hear?
Sarah: They should hear that, um, it matters that you're listening.
Mm-hmm. So keep listening. Keep listening to people's stories of recovery. Keep, um, trying to suss out what, what works for you, how- Mm-hmm ... how something might be helpful for you. Starting small, there's no place too small to start. There's a story I write about in the study where someone starts off wiggling her toes, but she might just be wiggling her toes, but she's also describing the support she's receiving from her partner and the way they've kind of tried to make- Mm
her place at home more comfortable for her so that she can live in a way that's expresses a kind of acceptance of where her body's at, of where her physiology's at. Mm. So, um, the, you know, the [00:41:00] tricky, there are some tricky parts in, in what I found because m- people who recover are supported. They do talk about their partners, they talk about family.
Um- Yeah ... they also do
Daniel: talk
Sarah: about- So external support is, is important Yeah, external support. Well, th- oh, that's more inter- internal really. But then they also- Okay ... do talk, yeah, they do also talk about non, non-medical recovery practitioners that I've described- Mm-hmm ... as being guidance or- Yeah ... external support.
So, so I mean, according to the s- the- narratives I have analyzed, you know, I would suggest that if, if that immediate support isn't there in your home, which for many people it won't be, that, you know, taking a step out to, to look for support from strangers, to begin with the support that's, that's as free as it can be, which is content- Mm-hmm
available online or finding online support groups, many Facebook groups now offering support groups and so on, to, to, to sort of just, just begin with as, as much as you can, yeah, in a way that feels, feels safe to you. [00:42:00] And I also think that all of those recovery stories where people talk about cultivating a sense of safety in their body, that, that really hits home with me, and it hits home for a lot of people.
And- Yeah. Yeah ... and, and, you know, I d- I think that's a meaningful, that's, that's a place to start.
Daniel: Good. Safety in the body. We always go back- Yeah ... to safety in the body. Yeah. It's such a recurring- Yes ... theme here for us. It is,
Sarah: yes. Yes.
Daniel: Yeah. Dr. Trevorrow, I just wanna thank you so much for all this research that you've done, uh, and coming on the podcast here to talk about it.
I think this is really helpful, and this pairs really well with this other interview, um, where we talk about- Interesting ... uh, recovery from ME/CFS a little bit more, uh, specific to people that are in the process of recovery. So this is- Mm ... uh, this is great. So thank you very much. Any final things you'd like to say before we wrap up?
Sarah: Just it's a learning curve. It's a massive learning curve. It is. Ma-
Daniel: Yes.
Sarah: Yeah, ke- I mean, just be o- be open to that, be open, you know. Yeah, that sounds a bit sort of like, like a moral position or something, but, like- No ... it is, it is really, it is [00:43:00] a space of transformation. Like, the scene of recovery is a space of transformation, and it's ongoing.
And- Yes ... I think it's worthwhile showing up to, um, um, e- even if you're better, as we are, for example, today.
Daniel: Absolutely.
Sarah: Yeah.
Daniel: Absolutely. Good. Good. Awesome. Well, thank you again. I really appreciate-
Sarah: Thank you ... you being here,
Daniel: Dr.
Sarah: Trevorrow. Thank you, Daniel. Thank you.
Daniel: I think what's so powerful about these two studies are the common themes that we find: a belief that recovery is possible, a new understanding of symptoms, a sense of agency, and a different relationship with the body and with symptoms.
And, you know, sometimes I sound a little bit like a broken record because we repeat these themes a lot with all kinds of different symptoms, not just ME/CFS symptoms, but also back pain or migraines or tinnitus, you name it. But these are the foundational elements of change. This is what makes change possible for people.
Of course, you know, these stories don't mean that everyone's recovery will [00:44:00] look exactly the same, but I do think there's a lot we can learn by listening to the people who have actually recovered. And if you're struggling with ME/CFS right now, I hope today's episode gives you a little bit of hope. Thank you so much for listening to the Pain Reprocessing Therapy Podcast.
As always, my name is Daniel Lyman, and if you have any questions or comments, my email is daniel@mindbodytherapycenter.org. See you next time.