What actually is Post-Exertional Malaise?

This is the transcript for our Post-Exertional Malaise episode of The Rest Room featuring Dr. Todd Davenport.

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Natasha: 

Hello and welcome back to The Rest Room, the podcast about living well with chronic illness. I’m your host, Natasha Lipman. 

Today we’re going to be exploring a topic I know intimately: post-exertional malaise, also known as PEM for short. 

But like the term “brain fog”, I know what PEM means, what it feels like, subjectively. 

But I wanted to dig into what we actually mean when we talk about PEM.

What’s happening inside our bodies when we experience these symptoms hours or days after exerting ourselves? What even are these symptoms? How do we recognise if we have post-exertional malaise and what’s triggering it? 

These are questions I’ve been pondering for a while and so I’m delighted to be joined for this episode by Todd Davenport, a Professor at the Department of Physical Therapy at the University of the Pacific in California in the US, who’s going to help us get to the bottom of all these questions and more. 

Todd is also a scientific advisor with the Workwell Foundation – an organisation which provides expertise to support a diagnosis, functional assessments, and treatment in the areas of ME/CFS, Fibromyalgia and other fatigue-related illnesses. 

To start, I asked Todd to explain what post-exertional malaise is… 

Todd:

First of all, we define it based on the patient experience. It’s like nothing else. We think that it’s unique. The symptoms and signs that people live with, they are very disabling, they come and go, they wax and wane. As the name suggests, they come and go based on your previous exertion. So a prior exertion may cause profound physical fatigue. And I don’t have to tell your listeners, but for those listeners who may be allies or clinicians that don’t experience this every day, fatigue is being nice. We’re talking about bonked, the feeling of nothing left, not able to move your limbs.

I’ve had patients who have the experience of post exertional malaise, post exertional symptom exacerbation and who have trained for marathons. And they tell me that the feeling of finishing a marathon is better than their post exertional malaise. Because there is the sense that you’ll recover from the marathon, but with post exertional malaise you just don’t know when and how that recovery might take place, and just the depth of the symptom.

And so getting outside the fatigue, it’s also cognitive dysfunction. It’s the inability to pay attention, to remember things short-term. It’s also sleep disturbance. The tireder you get, the worse you sleep. So it’s the spiraling decline where it almost becomes a situation where some people with post exertional malaise or post exertional symptom exacerbation reverse their days and nights. There are very few morning people among folks who live with post exertional malaise and post exertional symptom exacerbation. But it’s also other unusual symptoms, numbs and tingling, and fevers and sore throats, it’s like viral reactivation. There is widespread body pains, pains in the joints and soft tissues. There is gastrointestinal disturbances.

So what I’m trying to do is paint the picture for your listeners that we’re not just talking about tired, we’re not talking about coffee and a nap. But we’re talking about profound disabling symptoms that come and go after an exertion, that can be very disabling in daily life, limit basic roles for self-care, for preparing your own meals or getting to the bathroom. Working, being a member of a family unit, all of these things can be very much impaired by post exertional symptoms and signs.

Sometimes the whole concept of how humans break down nutrients and use them for fuel is a hard one to grasp. Especially with cognitive dysfunction and you have three or four different energy systems occurring at the same time, one is predominating, one is rising, one is reducing. And so I want to give credit to Dr. Chris Snow who works with us in the Workwell Group on this analogy. But I loved it, he said it one day in a lab meeting and I just loved it instantly and I’ve been wearing it out ever sense, so here goes.

So, “Human bioenergetics is like a plug-in hybrid car.” I don’t know anything about plug-in hybrid cars, so if you ask me questions about plug-in hybrid cars I wouldn’t be able to answer them, so please don’t. But here is what I do know, of course you have two fuel sources in a hybrid car, plug-in hybrid. You’ve got the gas motor and you’ve got a battery. And the gas motor is good for going up and down hills and if you have to haul people or things. And if you go freeway speeds, and so higher-intensity types of activities. And then you have the battery, and the battery is good for driving around town, stop-and-go traffic, flat surfaces. So it’s really good for lower-intensity, stop-and-go everyday types of things. And the gas motor can charge the battery so that’s an advantage.

So living with post exertional malaise or post exertional symptom exacerbation is like being a hybrid car with a gas motor that doesn’t work or it’s unreliable. What do you lose? Well, you lose the ability to do prolonged activities, higher-intensity activities and you lose the ability to recharge your short-term storage so you over rely on your battery, and your battery runs out faster and it needs to be recharged through rest breaks. I think that’s an analogy that resonates with patients and it’s helpful to understand the situation here.

Natasha:

Yeah, that’s a really great analogy, actually.

How can someone with a chronic illness know if they have post exertional malaise? Is it an official diagnosis? How can we think about PEM as a symptom and how can we know if we have it?

Todd:

Often people know they have post exertional malaise or post exertional symptom exacerbation years before a clinician recognizes it. And there is a couple of reasons for this. I think first of all, post exertional malaise and post exertional symptom exacerbation break a lot of rules about what clinicians think about how the body should respond to activity and to exercise. And the whole constellation of symptoms and signs, number one, can be a lot for one person, one clinician to take in in terms of a diagnostic process.

And number two, our medical system is so siloed that if you have GI issues, then you go to one physician. If you have pain you go to another physician. If you have sleep disturbance then you go to another physician. If you have autonomic intolerance, then you go to another one. So these symptoms and signs can be parceled out and viewed in a silo, which can limit the ability of one clinician to put them all together.

And so often it’s the patients who can tell us with certainty that the post exertional symptom and sign pattern is occurring. And there are certain things that patients can watch for and clinicians can listen for that we found, that can be helpful. The first hallmark, of course, is worsening after exertion. This gets to post exertional symptom exacerbation versus post exertional malaise. So post exertional symptom exacerbation just refers to symptoms and signs that worsen after an exertion. It’s agnostic to time, it doesn’t necessarily imply how long those symptoms take or may last.

And so often, post exertional symptom exacerbation is used to describe symptoms and signs that occur anywhere within a few minutes to hours, to a few days from the exertion. Whereas, post exertional malaise is really more symptoms that start to occur 24 to 72 hours after the exertion. And so they’re two separate phenomena, and very related, of course.

Of course patients can be alert to “Hey, I realize that I had a busier day than usual yesterday. And now I feel really dizzy and I have palpitations.” Or for people who are keeping track of their heart rate, “My heart rate is really dysregulated. I should not be standing here preparing a smoothie at the kitchen sink and have a heart rate consistent with jogging. And so patients can take a look at that.

I think one of the things that’s very helpful to help recognize is to write down what you’re feeling, to keep a journal of the symptoms and signs that you feel and the potential exertions that may have triggered them. Because you can show that journal to a clinician and it gives a person a sense of what that pattern looks like. And not just maybe the symptom that that clinician is interested in, but also the totality of the symptoms and signs.

I think it also helps when patients prioritize, maybe, their top three signs and symptoms that they find most troubling. That might help to direct investigations against other conditions that may be causing these symptoms and signs. As we know, the post exertional malaise and post exertional symptom exacerbation are diagnoses of exclusion. They’re unique enough that we can start to help before a complete workup has taken place. But prioritizing those symptoms and signs can help clarify that reasoning process for the clinician. So, a few things that patients can do to help with the recognition.

But I think above all it’s up to the clinician to listen to patients and to assign credibility to the story, the narrative that the patient is saying. I’ll say that post exertional malaise and post exertional symptom exacerbation from the perspective of a clinician just seems really far out if you’ve never seen it before, really hard to believe. But it’s not that the patients are hard to believe, it’s just that the signs and symptoms are just so severe and disabling, and so many. So I think those are some things that the patients can do.

Natasha:

I really want to follow up on that. But first, I think, we’ve heard the word exertion a lot. Can we define what we’re talking about when we say exertion? And I know from looking back when I started thinking about having to do movement or exercise again to manage my EDS, I had to completely reframe how I thought about exercise. And I don’t use that word anymore, I think about it in terms of movement. And movement can even be sitting up. So, when we think about exertion in the context of chronic illness and the context of post exertional malaise, post exertional symptom exacerbation, what are we talking about?

Todd:

It could be anything from running, walking, taking a walk, walking the dog to sitting up in bed. And it really depends on where someone is with regard to their signs, symptoms and functioning. It could be chopping vegetables, preparing a meal, it could be dropping the kids off at school. Daily activities are exertions.

We had a patient at one point who loved to swim, a patient with ME. And she would do her daily swim then she would essentially go to bed for the rest of the day, and she would get up and swim again. And what she did was swim, and she noticed that her swims were getting less, that she was able to do less. And her workouts were less intense and she was decreasing her distance because she was feeling poorly. And so ultimately, that’s exertion. Just the simple act of getting up and getting to a pool could be exertion enough.

And so, it’s important to keep track of the level of exertion that might trigger symptoms. Because that gives you a sense of how severe that post exertional malaise and post exertional symptom exacerbation is. And so, if there are smaller exertions triggering the same pattern of signs and symptoms, then you know that the condition is worsening. And conversely, if you notice that you’re able to do a little more and not have as severe or as long symptoms and signs afterwards, you know that the condition is a little better.

So just underlining the point that number one, the definition of exertion varies based on the person. And number two, anything can be an exertion. As you pointed out, life can be an exertion. And so, the way to think about physical activity changes a lot when we’re working with this condition.

Natasha:

And just going back to what we were talking about earlier, how for clinicians who don’t have experience of understanding these types of symptoms, even as someone who has lived with these types of symptoms for a really long time, they’re weird. It’s so bizarre that you can do something one day and then only feel the effects of it 28, 48 hours later.

Do we know why that is? Why does it take time for these symptoms to start coming up? There is obviously, on the podcast we’ve talked about immediate crashes after coming down after doing something. But if we’re talking about some of these more longer term that take a day or two to kick in, why?

Todd:

Yeah, I wish I had a good answer to that question. And we’re working on it, I don’t think we’re quite there yet. But what we do know from two-day cardiopulmonary exercise test data is that if we have someone do a maximal bicycling test to exhaustion on one day, and with the intention that we’re trying to measure that patient’s baseline and also induce post exertional malaise or post exertional symptom exacerbation using a standardized stressor, we come back the second day and we do the same test.

And what we find is that people consume less oxygen, that maximal oxygen consumption tends to be decreased the most at this point during the test, called ventilatory anaerobic threshold. Which is when, basically, your aerobic energy system stops functioning normally and you start using more, your anaerobic, your lactic acid energy system. And the relevance of this is that people generally try not to exert in a zone where their legs are burning and they’re out of breath. And that’s what ventilatory anaerobic threshold represents.

And so what we’re seeing is that this represents a functional ceiling. You don’t want to be uncomfortable when you’re exerting ordinarily. So I’m going to choose a speed to go up the stairs where I’m not going to be a sweaty, out-of-breath mess when I’m up there. And so I’m going to modulate my work load in order to accommodate that, it’s like that. So think of that ventilatory anaerobic threshold as a ceiling for function.

And what we see is that this ventilatory anaerobic threshold happens at a lower volume of oxygen, meaning that it’s less efficient, and it happens at an earlier time during the test, so people can do less. And it also corresponds with less workload. So a person’s physiology is just different after they’ve exerted.

There is some emerging data also suggesting that after an exercise challenge there are changes in autonomic functioning, where the autonomic nervous system becomes dysregulated. So here again, exercise heart rates tend to be blunted on that second day of cardiopulmonary exercise tests. And we also know that there are immune abnormalities that come after exercise challenges. So it’s a whole ball of a lot of things.

And my sense is that the time lag is really because it takes some time for those changes to really occur and rise to the threshold that it can impact someone’s functioning. So that probably explains the time lag. But the time lag is really challenging, right? So if you have a 72-hour lag between what you just did or what you did, and how you’re going to feel, you have 72 hours to really do a lot more.

So it’s almost like I think about exertions as waves in the ocean where you have one wave come forward and then you have another wave. And in people who are having a crash, those waves are coming successively faster because those exertions are piling up on the beach, by analogy. And folks who are pacing and trying to space out those waves a little bit more, that’s a little bit like low tide where the waves are coming but the waves are not piling up on a beach anymore. So the period of time between an exertion and symptoms can be really challenging for people, especially who are new at living with post exertional malaise or post exertional symptom exacerbation.

Natasha:

And I think this also brings us back to the conversation of what is exertion? So, these CPET tests that you ran and the research that’s being done, this is being done on quite intense physical exertion. How can we conceptualize these findings in the day-to-day life of someone who struggles to do their day-to-day tasks? And I suppose within that as well, can we also talk about the role of emotional and social exertion and just cognitive exertion and not just physical?

Todd:

Yeah, no doubt. We spend a lot of time talking about physical exertion because that’s what we use and measure with cardiopulmonary exercise testing, but I think the best way to extrapolate those findings from maximal cardiopulmonary exercise tests is just to consider that most of the changes that we see, we see them with submaximal levels of exertion. Even during a maximal test, we start to see abnormalities occurring during the range of daily activities during a test. So you have, of course, you’re starting at rest, and then you’re increasing the intensity of the bicycling task until a person reaches criteria for maximal exertion. But along the way, you’re also measuring the range that people live in in daily life. And that’s the most interesting to me I think, and to our Workwell group, is that we see most of the abnormalities at ranges where people function during the day, so it’s very easy to think that those exertions don’t have to be a maximal test.

But I will say for a lot of people, even sitting up in bed during a crash day can be up near someone’s maximal exertion. So really, your whole physiology fluctuates, and I think that’s just a really important key concept behind post-exertion malaise, that not only are the signs and symptoms fluctuating, but it’s the result of a fluctuating physiology. We’re not just looking at physical triggers with this, but cognitive, emotional, environmental triggers, chemical sensitivities and so forth, all can be triggers of a crash. And I think there’s some good data from Dr. Lily Chu and her colleagues. One of my favorite studies to cite, even the title is really cool, Deconstructing Post-Exertion Malaise.

They did an internet survey where they looked at folks with ME/CFS and asked them a bunch of questions about their symptom experience and just tried to figure out what were the symptoms they experienced, what were the predominant triggers, considering both physical, cognitive, and emotional? How long do your symptoms tend to last? How long does it take for symptoms to come on? And in this study, one of the great things about this study is that it just showed the diversity of different symptoms and signs and really the diverse range of patient experience with how long it takes for symptoms to come on and how long they last. And so for clinicians like me, it’s all about understanding from the patient’s perspective what a person’s post-exertional pattern of symptoms and signs is uniquely, it’s unique to them. It’s a really unique lived experience, and so it’s incumbent on the clinician to understand that.

But that also that physical and cognitive triggers were the most common. Emotional triggers were less common. There, but less common, significantly less common. And I think this really does provide some additional indirect evidence that post-exertional malaise and post-exertional symptom exacerbation is not anxiety, it is not depression. I would expect emotional triggers to predominate if it was, but instead it’s overexerting physically, cognitively, and that tends to cause significantly greater symptom expression than emotional triggers. So, I found that to be really interesting.

Natasha:

Can we also take a moment to talk about what exertion can look like cognitively? Because I think it’s easier to understand physical exertion, and I remember years and years ago when I felt like I was doing nothing, I was just in bed all the time, but I was working so much, and they were like, “You need to do less.” I was like, “I’m in bed. What do you want from me?” And this was before I had fatigue-fatigue. This was more related to my EDS. They were like, “You’re overexerting.” I was like, “How can I be overexerting? I’m not moving.” And I have found that for me, actually, it’s much easier for me to learn how to manage my physical exertion, whereas I’m horrendous at managing my cognitive exertion.

So, partially from a selfish perspective, but also because I think this will be very interesting for other people, can we talk a little bit about cognitive exertion, why it can have such physical effects, and what are we thinking about when we think about cognitive exertion?

Todd:

Yeah, absolutely. Remember, just like your muscles are metabolically hungry structures that metabolize sugars and fats in the presence of oxygen, so are the neurons in your brain. A very metabolically-rich structure, slightly different processes, different mechanisms, but same idea. And so it’s not a big surprise that if we think that metabolic deficits underlie post-exertional malaise and post-exertional symptom exacerbation, that we would see issues happening with repetitive brain activation just as we would see them with repetitive muscle activation. That’s my sense of it in terms of why it exists. Now, what does cognitive exertion look like? I mean, your listeners are doing it right now. They’re listening to me. It’s cognitive exertion. I’m doing my best to be interesting, but I’m a little monotone and I try to be a little monotone with patients because processing too much in the way of fluctuations in noise and fluctuations in affect sometimes can be really hard to process. So, I tend to get a little flat when I talk to patient groups, and part of that’s intentional. Part of that’s just because I’m a professor who bores people for a living.

Reading, watching a movie, doing anything sitting up at the computer combines the physical needs of sitting up with the cognitive needs of tending to the computer or the phone. Being on social media, responding to people on social media. All of those are exertions and can potentially trigger a crash or perpetuate a crash, and it’s hard, because as you pointed out, you’re not doing anything physical. So you think, “Well, this should be okay, we should be able to do this,” but come to find out that sometimes these cognitive triggers are, some people are more sensitive to them, first of all, and second of all, if you’re in a crash, you’re not really resting if you’re still exercising your brain.

Natasha:

So, then that leads to the question that I’m constantly trying to answer. Can we rest cognitively while also not just lying in a dark room doing nothing?

Todd:

It’s really hard. People get bored, they get isolated. When we talk about pacing and people talk about doing less or not doing anything, this is where I react against that, because pacing is such hard work. It’s hard physical work because you’ve got to figure out how to reduce your activity intensities and reduce the effect on your body. It’s hard because you have to reduce your cognitive load and you get bored and you get isolated, because even carrying on a simple conversation, if you’re deeply into a crash, can be really hard. Texting and that kind of thing is really hard for people to do as well. And so how do you do it? Well, acknowledging it’s hard. You can listen to music, no lyrics to process. You can watch movies that are familiar to you that you don’t really have to dissect the plot.

I might have seen Princess Bride like 15,000 times, and so that’s like junk food for me. It’s comfort food cognitively, that I’ll sit down and watch it, and at one point I probably had the entire thing memorized and it’s just something very familiar to me that I don’t have to really work to process. Same thing with books. Have comfort food books. If there’s a book that you’ve read, a favorite book that you’ve read a hundred times, then have that around, and that would be something that would be good to stave off the boredom, but still give yourself something to do. I think really simple games on your phone, but maybe just in moderation. Stuff you don’t really have to think at can be helpful. But the hard part with games and with social media is that there is a lot of processing that goes with that, and they don’t make low-stimulation games so much, so those become a little harder. But those are some general ideas to start with.

Natasha:

You mentioned pacing, and pacing is something that I am fascinated by and I’m constantly exploring. It’s a big theme on The Rest Room. What are some of the longer-term strategies for coping with post-exertional malaise, post-exertional symptom exacerbation, and do they have the potential to help reduce the severity of symptoms over time?

Todd:

Pacing’s a lifestyle, that’s the long game. That’s the first insight. If you don’t pace, your body will make you pace. You’ll have a crash, and at some point you’ll need to pace, and that’s unfair. It’s imposed. So, the hope, the thought behind an energy conservation or a pacing program is really to keeping your body from needing to tell you in that way to do something. The other thing I think to remember long term is that pacing isn’t curative. Pacing can help improve your baseline, it can help improve the predictability of symptoms and signs. It can help you understand when things can be slotted in and when you’ll need to rest to pay back, it can help people feel better on a more consistent basis, but it’s not curative. I want to be really careful to say that because I like to make sure that people understand that, and I’m sure your listeners have that figured out, but for any clinicians or allies who may be out there that think that pacing is just sort of like the bee’s knees and it’ll fix it, it won’t.

And so nothing we talk about with pacing, we spend a lot of time talking about pacing, should prevent us from looking for a cure. In any way distract us from the importance of that. Those are two, I think, key insights for pacing and energy conservation, and I think in order to make it work long term, there are two additional insights that I hope will help your listeners. And the first one really is that pacing is a health behavior just like anything else. Pacing is a health behavior like trying to exercise. Exercising, you go to the gym on January 1st, it’s full. You come back March 1st, usually it’s much less full. Exercise is a health behavior and there’s an entire process around helping to incorporate it into your life. And conversely, pacing is a process. There’s going to be certain things that you’ll have an easier time pacing, easier time figuring out. There’s going to be things that are harder to pace, that maybe you can’t pace or can’t pace as well or haven’t figured out one thing to pace when you are really good at pacing something else.

And so it’s okay to be bad at it as long as you’re learning and doing your best. And to that point, the second insight is I think patience and grace are two really important pieces for someone who is trying to conserve energy on a long-term basis. There’s going to be times that your signs and symptoms vary for no reason at all. You can’t figure out what exertion, what the trigger might have been. And that doesn’t mean everything is bad, the whole plan is bad, doesn’t mean you’re bad at it. It just means this disease is unpredictable, and that’s part of the whole ball of crumminess that goes along with it. And I think also giving yourself grace, giving yourself grace and expecting it from others. That’s the harder part, because as an invisible disability, grace is often in short supply. But again, giving yourself permission to expect it from others, and that’s for people like me to work on, getting people to extend it.

Natasha:

I put out a call on my Instagram for questions and I’ve tried to integrate a lot of them into this conversation.

Todd:

Oh that’s fantastic.

Natasha:

Thank you. And one of the questions that we got is, can post-exertional malaise damage accumulate over time to cause progressive decline? And I suppose that word “damage in” and of itself is a word to unpack here.

Todd:

I don’t know. Let me tell you what I think. There’s no studies that suggest that damage is occurring, but I do know that post-exertional malaise and post-exertional symptom exacerbation, the effects can accumulate over time. And I know that based on listening to patients, and I really think that’s valuable evidence. So while we might not have a really ironclad gold standard research study or studies that say post-exertional malaise can accumulate and cause progressive decline, I think we have a number of patients for whom that’s been the experience, and I think that giving those patients credibility is really important.

So I definitely think that there is some accumulative effect of crashes, especially those that are not controlled or paid back. But what I’ve seen is I’ve seen some people who have been moderately to severely involved engaging in an energy conservation effort and get themselves to a mild to moderate status, so people can improve.

What we don’t know is the dynamics of that improvement. We don’t know how many crashes or how intense they need to be in order to accumulate, what the accumulation process looks like for whom, how reversible some of these things really are. Again, as I pointed out earlier, this is a lifestyle. Your body will make you pace if you don’t. And so ultimately it’s a survival strategy more than it’s a lifestyle or it’s an intervention. I’m not sure that we know the answer to that question, but I think patients are telling us.

Natasha:

You’ve talked a lot about the importance of listening to your patients and learning from your patients and just how much research still needs to be done, but that frontline research is something that you are involved in through your work. How, going forward, are you translating what you’ve learned from the research and from listening to your patients into how you treat your patients? And do you have anything to say to clinicians, especially clinicians who aren’t experts in working with people with post-exertional malaise? What do they need to know, really?

Todd:

That’s a big question. My role with the Workwell Foundation over the past dozen years or so has been to try and help translate the physiology into sound advice for clinicians and patients. And I think that’s really what we’ve been about. And so many of the resources on the Workwell Foundation come from our work to do that, free resources. So that’s one area I think where we’ve really worked hard to translate.

Since the beginning of the pandemic, of course, I’ve been out in front of every clinician group I possibly can think of and on every podcast I can possibly talk my way onto, so thank you for this opportunity to be able to translate the research into patient and clinician facing public communications. It’s nice to write the paper, but the paper often is in a journal, and if it’s in the journal and nobody reads it, then it doesn’t help anyone.

On the horizon, we’re looking at offering clinical consulting services through Workwell, more news on that. Also, I’m in the middle of trying to write a patient workbook that basically translates some of these findings and the energy system first aid concept more broadly that we’ve used to describe energy conservation, that comprehensive approach to energy conservation, so that way patients and clinicians have a resource to work together, even clinicians who aren’t a lot of background in conditions involving post-exertional malaise. So we think that’ll help. Hopefully, that’ll be ready by later this year.

Just, again, in the manner of trying to get information out there in the form of these podcasts. I know that we had an email exchange before this session, and I mentioned this, and I hope this gets on and that you’re not modest enough to cut it out, but I just want to say thank you for what you’re doing, because I think when it comes to translating efforts by researchers and clinicians, you are a big part of that, and the folks who are out there doing the public facing communication and the journalism associated with that to help give good information to patients and to clinicians and to allies to navigate this.

I’m particularly in awe of patients who do this, people who are living with these conditions, because, ultimately, you all are going to pay for this later. This time you saved up for and you chose to do this, and I’m just so grateful for your leadership to be able to help do this. And I think you just have such a unique role in the media ecosystem as a person who lives with this and who knows how to communicate. So again, thank you so much for being an important part of my translation effort.

Natasha:

Thank you. And yes, this is towards the end of my day, so that made me feel a bit emotional because my emotional regulation is *laughs*. But thank you. I really appreciate that. I’ll keep that in. Thank you.

I want to end with a message to patients. I think one of the biggest things that came out of the pandemic was a wider recognition of how long patients with ME have been ignored and have been let down. And I think there was a hope that was frustrating to many, but there was a hope that the pandemic would push forward a new era of research that might provide hope and help and care and answers to patients. As someone who is working really, really hard in this field, do you have a message to patients?

Todd:

My sense, after working in this field for a dozen years or so, is that hope is a conscious choice. We can choose to be hopeful or we can choose to despair. And there’s a lot out there that’s really difficult in terms of what we’re finding is a less than robust commitment to research, to preventing new cases.

What I choose to do, I guess, is what Mr. Rogers, for those of us who grew up here in the States would know Mr. Rogers, to look for the helpers. And so while there’s all of that out there in terms of the limited support, really discouraging attitudes towards reducing the potential for new cases of long COVID and so forth, I’m choosing to look inward, and I’m choosing to look at you and your show, and I’m choosing to look at the patients and the allies that I have a chance to work with through many different avenues, Workwell, through Long COVID Physio, through just a whole number of different organizations, and I’m choosing to look at researchers and the clinicians who are working really hard to learn and understand this disease to be able to help people. I’m choosing to look at the social media groups that are trying to get really good quality, practical advice out to patients and to allies.

That’s where my hope comes from, is that we do have a network, we do have a community, that is working really hard to understand. And I think with the right resources and the right approach, we can do it. But really the prerequisite is getting this community together and fulfilling all of those roles. And those make me hopeful. That hope comes from just seeing the strength of the human spirit at the end of the day in terms of everyone contributing what they can, what they have, from where they are, and how can you not get behind that?

Natasha:

A big thank you to Professor Todd Davenport for his amazing insight into post-exertional malaise. If you’re interested in learning more about his work with the Workwell Foundation, I’ve linked some resources in the episode notes. 

Please rate, leave a review, and share the episode as that really helps new people find us.

You can find me on Substack at natashalipman.substack.com 

Aaand that’s all from me. Thanks so much for joining me in The Rest Room. Ta ta for now!

 

Links

• Subscribe to The Rest Room newsletter for weekly “slow content” about chronic illness.  

• Find out more about Todd’s work at the Workwell Foundation

• Follow me on Instagram and Twitter.

• Produced by Philly Guillou at OG Podcasts.
• Episode art by Lucy Dove.
• Introductory music by Amit Rai.