Transcript
Sophie Shephard: Welcome back to Beyond Pain and Fatigue. I'm Sophie Shepard.
Ollie: And I'm Oliver Crossley.
Sophie Shephard: And today we're really excited to be diving more into a crash course in MECFS, if you'll pardon the pun. In MECFS, we're talking myalgic encephalomyelitis or sometimes ah more readily known as chronic fatigue syndrome.
Sophie Shephard: So whether you're a health professional, someone living with this condition, or whether you're just someone who's curious to learn a bit more, this episode's for you. We're going to be having a pretty broad chat today about what ME-CFS actually is, ah some of the ways we might diagnose it and some of the core um defining symptoms, including post-exertional malaise or PEM.
Sophie Shephard: We're going to be chatting a bit about the controversy around some of the treatments um that are a bit outdated now, like graded exercise therapy and cognitive behavioral therapy. And we're also going to talk about the emerging science, some of the overlapping conditions we might need to be aware of,
Sophie Shephard: practical approaches to management and adaptations to clinical care maybe talk about a few, guess, emerging models, concepts, things like allostatic load that might help us to really shape the future of how we manage and assess this condition moving forward.
Sophie Shephard: So, Ollie, if you'd like to start us off for those who might not be as familiar with ME-CFS, do you mind maybe sharing with everyone ah bit of an overview as to what ME-CFS actually is?
Ollie: think defining this condition is tricky and it's part of why I think this condition has had such poor awareness and management and controversy and stigma around it so far, because it's a really a complex multi-system disorder. And what we mean by that is that many different systems in the human body are interacting to likely produce the symptoms and experiences that those with this condition have.
Ollie: And the cardinal, I guess, set of symptoms that we're talking about today is this post-exertional malaise or post-exertional symptom exacerbation.
Ollie: um There are some key diagnostic criteria that thankfully now with the latest set of diagnostic criteria that we have from the National Institute for Clinical Excellence out of the yeah or NICE guidelines in think 2021, we look at things like people experiencing firstly unrefreshing sleep where they wake um with, ah you know, depending on how you categorize it, an adequate amount of sleep but feeling incredibly unrefreshed and like not not nice at all, um a a cognitive dysfunction or brain fog as it's commonly colloquially known, it's
Ollie: things like memory issues, difficulty concentrating, all these things that extend beyond the normal amount of, you know, experiences of these things that we might have when we're a bit, you know, run down or tired, hence the difficulty with the word fatigue.
Ollie: It means things.
Sophie Shephard: I think that's such an interesting bit though, right? Because I think this is something we see all the time where there kind of often isn't that differentiation between just general fatigue and chronic fatigue syndrome.
Ollie: Yeah.
Sophie Shephard: like because Because you can really have fatigue relating to a lot of different health conditions and not necessarily everyone who has fatigue will have chronic fatigue syndrome or ME-CFS.
Ollie: This is it. Yes.
Sophie Shephard: And I think with what you've mentioned there around the diagnostic criteria, that's a really important point because some of the, you know, you mentioned there's been multiple diagnostic criteria. We kind of went through a range of them um over the years. There used to be the Oxford criteria and then the Fukuda criteria that we used.
Sophie Shephard: And these have sort of now been kind of moved away from because they've been a little bit too broad and and they haven't necessarily helped to hone in on people who do have that hallmark post-exertional malaise as opposed to more general fatigue symptoms um and that's where some of those newer criteria you've mentioned there really have PEM or post-exertional malaise as like the core symptom which I think is a great move forward but it's um it it does make it I think a bit tricky when we're then interpreting research from yeah previous years because sometimes it kind of muddies the water on who's actually been included in some of these studies
Ollie: Yes, makes it difficult to interpret. And now I think that's why it's nice to, despite all the complexity, I think, and the difficulties with words like fatigue, I think that's why, I don't know about you, Soph, but lately I'm even talking about this. I really like falling back just to myalgic encephaloma.
Ollie: myelitis that that i think because it just keeps it a bit more biomedical for those that it needs to be uh to to differentiate it but also just to come back to how the world health organization looks at this it's a neurological disorder as best we understand
Sophie Shephard: Yeah, for sure. and And I think that's something that gets missed and you alluded to it before, but there is such a stigma and misunderstanding around ME-CFS still. Like, I mean, you can look back to, you know, the last few decades and sort of like the like even the late 80s, 90s and, you know, seeing newspaper headlines talking about the yuppie flu, for example.
Ollie: Horrible.
Sophie Shephard: And there's been some really horrific sort of, um I guess, judgment and stigma placed on people. and And a lot of it, I think, stems to the fact that often people there isn't a great general awareness of of the condition and and just how complex it is and the i guess the biological nature of it.
Sophie Shephard: That's not to say we we fully understand it now, like we'll talk about it in a little bit, of course, but like there are there are so many complex um pathophysiological processes that contribute to these symptoms and it's not just being tired and it's not just deconditioning, which again, we'll kind of talk about when we talk about some of the issues with management and graded exercise therapy, because we have come a long way in our understanding about how we approach these things.
Ollie: Thanks. Mm.
Sophie Shephard: But it makes it really difficult when people are trying to access care and when they're experiencing these symptoms, because
Ollie: and
Sophie Shephard: you know In my experience working with people who come to see us in the clinic, like quite often it's been a very long journey of having a long history of these symptoms and kind of never quite getting an answer.
Sophie Shephard: um Or unfortunately, you know sometimes they've actually had quite harmful experiences with health professionals because i mean the the health professionals may be very, very well-intentioned and coming at it from a really good place, but they just might be lacking that
Ollie: a and they have
Sophie Shephard: that awareness of these conditions and the way in which we have to adapt how we approach it um and, you know, through no intent but just through a lack of understanding have accidentally sort of made recommendations or managed things in a way that have led to harm. So hopefully that's something we'll be able to kind of help with throughout this podcast.
Sophie Shephard: And if you're a health professional listening, um hopefully we'll be able to give you a bit of an idea as to some of the things we need to be aware of. And I guess like it's no one's fault either. Like, I mean, a lot of our undergraduate training for health professionals doesn't include this stuff.
Ollie: inadequate
Sophie Shephard: So, Like it's, it, it makes sense why it's maybe poorly understood and why there aren't that many health professionals out there who have an understanding of these conditions, because it's just not part of our routine training. I think it should be. And I would hope that with the pandemic happening and and sort of an increase in cases of chronic fatigue and um long COVID that hopefully some of these things start to make their way into undergrad training. But yeah,
Sophie Shephard: Yeah, I guess I do have sympathy for health professionals because even me and I'm sure that you too, Ollie, like I came out into practice and like kind of had to work it out on the fly. um So it's tricky.
Ollie: Oh my God. Yeah. Yeah.
Sophie Shephard: Yeah.
Ollie: Yeah. I remember actually like two personal experiences are coming to mind of being on either side of the interact, the healthcare care interaction. I mean, the first one, I remember a client coming into my first year of practice and even though I'd had experiences with, in hindsight, was probably experiencing a variation of ME-CFS or these post-viral, post-exertional malaise and getting to distinguish between the categories as grey and overlapping as they all are.
Ollie: This gentleman was referring to his wife's 20-year experience of ME-CFS.
Sophie Shephard: Thank you.
Ollie: And I look back and just think about how I talked about it to him, trying to be kind and compassionate as I was, but still being woefully misinformed and quite potentially triggering to him because this... man was talking about it like oh my wife can't do this or this and I was like well she might benefit from a bit of exercise and just thinking how unhelpful that was all to flip to recent experiences to like you said so for well-meaning professionals medical specialists that just thankfully they admitted to me that they just didn't know but in seeking help for prolonged fatigue experiences they were just
Ollie: they kind of went, well, it's not fibromyalgia, so I'm not sure. um And we'll just scan our way to infinity. And I didn't really want to do that. Yeah, it's, some I think it's to because anything, and we've talked about this a lot, when anything's complex, multifactorial, I just don't think our systems of knowledge meet it. And that's why I'm excited to um hand the mic to Soph later today to get her to do our favorite section of any podcast, which is the NEI Ramble. I'm going label it now.
Sophie Shephard: but The NEI, yeah, I know. It's like, I feel like we're talking about this so often and I was joking before we jumped on that like, oh no, we're going to end up in the and NEI conversation again because it really is such a foundational sort of underpinning consideration that like I have and I know that you have as well, like going into consults.
Ollie: I love it.
Ollie: Yes.
Sophie Shephard: And so i think we've already like proactively decided we're going to need a specific episode talking about this and and maybe some of the more, uh, in-depth sort of clinical reasoning models around the and NEI stuff and allostatic load.
Sophie Shephard: So we'll definitely be following up with an episode on that in more detail.
Ollie: Totally. We should probably pause actually, because I'm just mindful that NEI, apologies, Soph and I are are quite nerdy, refers to the complex interaction between the neurological immune and endocrine systems and how they can often work in a bit of a um three musketeer fashion, not quite as separate as we like to think of them.
Ollie: um So that's what that means.
Sophie Shephard: Perfect.
Ollie: but
Sophie Shephard: Yeah, perfect. perfect And that's that's a great encapsulation of it. And when we're talking, you know, even about just even looking at ME-CFS, for example, you know, we've we've talked a lot about, I guess, the fatigue side of things.
Sophie Shephard: And most people would organically sort of associate chronic fatigue syndrome with fatigue.
Ollie: Yes.
Sophie Shephard: But we also see that It comes with this whole host of different symptoms. and And like you said, you know, it is a really complex multi-system disorder. So it makes sense why we maybe see some of these, but it's certainly not just fatigue. You know, we do see that, um you know, people often have sleep disturbances. They might have really significant cognitive dysfunction. So that feeling of like brain fog and like memory issues, like things just aren't processing correctly.
Sophie Shephard: We often see people have orthostatic intolerance, which is basically where, you know, a host of symptoms that get worse when we're in upright positions. Yeah.
Ollie: I think maybe we should pause on that because that orthostatic one is often one that gets missed.
Sophie Shephard: Yeah.
Ollie: And I think it's something that, that I've heard way too many times in consults where someone will say, yeah, I just get dizzy when I stand up and it's happened a bit more since this has happened. And, and it's just passed off like, like, I don't know, like a mild headache.
Sophie Shephard: Yeah, this is normal.
Ollie: Um, so
Sophie Shephard: Like this is fine. and
Ollie: Yeah, exactly. and And as you and I know, um even our personal experience, it's it's it's not fine. It's quite impactful and disabling. So could you, do like, because that word can be very easily misunderstood.
Ollie: what What does it encapsulate, like, in in normal people words?
Sophie Shephard: Hmm. So orthostatic intolerance is kind of like a catch-all term that we would use and there are different forms of it that, you know, particular conditions that might fall under that banner.
Ollie: Yep.
Ollie: Hmm.
Sophie Shephard: But it basically refers to symptoms that worsen when we're in an upright position or what we would call like a gravity dependent position. So anywhere where our system's having to kind of fight more against gravity. So
Ollie: Mm-hmm.
Sophie Shephard: So when you think about, say, someone standing up, our body's having to work a lot harder to try and bring blood back up into central circulation because we're working against gravity compared to when we're lying flat and we're horizontal, it's much easier for that to circulate.
Sophie Shephard: So that's sort of what it refers to. But what it often looks like is, like you said, people who might find that they start to get dizzy or headachy when they've been standing or upright, sometimes even sitting.
Ollie: ninety one
Sophie Shephard: upright for a while can bring it on. They might feel a bit lightheaded and a bit like woozy. um Sometimes for some people, they might also get other sort of almost cardiac symptoms with it. So, you know, um more and more people are aware of POTS or postural orthostatic tachycardia syndrome. It's one of those conditions that can fall under that orthostatic intolerance banner.
Ollie: Yes.
Sophie Shephard: um And that often presents with sort of, you know, a rapid heart rate or a feeling of awareness, like heart palpitations. so So, but all of these things are triggered by those sort of upright postures and sustained upright postures.
Ollie: Yeah, right.
Sophie Shephard: So we often say it like in practice that when I ask people about this, the sorts of situations I might ask them are things like, how do you feel when you have to take a shower? For example, um how do you feel when you're standing in queues?
Ollie: The common one.
Sophie Shephard: How do you feel if you, you know, can you actually stand still um for any length of time or do you find that you're always having to like fidget and move around or change position? Because sometimes people very intuitively will fidget or like they find themselves kind of almost naturally compensating for that even when they don't realise that's what they're doing.
Sophie Shephard: Yeah.
Ollie: that's That's what love about this because it's like with all the gaslighting and with all the confusion and the misunderstanding, that's a perfect example of our the awe-inspiring, wonderful, adaptive nature of what our bodies are just trying to do already. and and And they're doing the best they can all the time. And it's sort of just assuming that to be the baseline.
Sophie Shephard: Absolutely. And that's where, you know, one of the things we talk about from an assessment perspective, particularly for health professionals who are working with patients who might be presenting with chronic fatigue symptoms. POTS and orthostatic intolerance is known to go really hand in hand with ME-CFS and it's thought to be one of the kind of contributing factors to symptoms.
Ollie: Mm-hmm.
Sophie Shephard: and But yet it's, again, another sort of thing that's often missed or not well understood and not part of routine education for health professionals. so as part of our assessment, like we're always screening for orthostatic intolerance and POTS because You know, there are some things we might screen for or suspect that are going on that that might not necessarily drastically change what we do with people.
Sophie Shephard: But for things like orthostatic intolerance and POTS, there is actually specific management strategies and tailoring of of things we're doing that can actually really help if that's part of what's going on for someone. So it's actually really important for us to pick these things up.
Ollie: Totally.
Sophie Shephard: um Yeah, but so so that's sort of one overlapping condition. And I mean, orthostatic intolerance is only one overlapping condition. chronic fatigue syndrome.
Ollie: What else?
Sophie Shephard: It does has been known to happen in association with a lot of other conditions, things like fibromyalgia, um irritable bowel syndrome, migraine, autoimmune conditions.
Ollie: Hmm.
Sophie Shephard: um I think more recently we're starting to see that there is this overlap between Ehlers-Danlos syndrome and other hypermobility disorders too. so So it does seem like these things kind of go in patterns and there are potentially an elevated risk um of chronic fatigue syndrome when there are these other factors.
Sophie Shephard: factors going on. And again, I think when we think about it through that interrelatedness of the nervous immune endocrine systems and knowing that these other conditions often also present with some of those um sort of some of that dysregulation across these three systems, we can kind of maybe understand why we might see this overlap.
Ollie: Definitely. And you're one of the better qualified people to, I think, explain what I've always found, i think on the surface level of understood, but maybe not had it explained simply enough. and i think this is a great opportunity because these co-occurring um comorbidities, different conditions that occur alongside ME-CFS, there's often a group of them that I think has been found together, um you know, like five pesky friends that no one wants to have.
Ollie: sometimes called the pentad i believe um is that right
Sophie Shephard: Yeah, it depends on on on, I guess, which area of the research you're looking at. So the Pentad is something that's been described.
Ollie: m
Sophie Shephard: So the Pentad super system is the the full like you know label for it.
Ollie: what is that
Sophie Shephard: Yeah, so it's something that's spoken about in the context of hypermobility disorders specifically. So it's Dr. Andrew Maxwell is the specialist who has um sort of spoken about and written about that um predominantly. I believe it was originally his work.
Sophie Shephard: I haven't seen that it originated from anyone else. So I apologize if I have that wrong. But my understanding is it came from him. um He has, you know, spoken. He's got some lectures on YouTube that talk about this. But effectively, what that Pentad super system is describing is that In the context of hypermobility disorders, we often see these complex overlapping conditions and often people do have a bit of a, I guess, a laundry list of different conditions that that co-occur.
Sophie Shephard: And when you look at those, we can kind of see that they nestle into sort of five areas um So pentad is five, pent is five. So five different sort of subgroupings and these sort of subgroups tend to overlap when people have the presence of hypermobility. So we have joint hypermobility itself where we see all of the, I guess, the musculoskeletal things that we would expect to go along with that relating to joint hypermobility and trauma.
Sophie Shephard: um But then we can also see that um people are also, um ah guess, somewhat predisposed to developing things like mast cell activation issues. So mast cells are part of our immune system and they react to potential allergens or threats and initiate the immune response by basically they break apart and they release histamine.
Ollie: Yeah.
Sophie Shephard: And that histamine is like, you know, the same reason you take an antihistamine when you get allergies. Histamine gives us that sort of allergic response. That's what mast cells do. So people can have discrete mast cell activation syndromes, but they can also present with a lot of other allergic type symptoms.
Sophie Shephard: So they might have really bad hay fever or, you know, skin irritations, that sort of stuff, that sort of allergic-y type thing.
Ollie: I guess.
Sophie Shephard: We also see that people might be more prone to developing autoimmunity. So there are a lot of autoimmune conditions that are often comorbid in joint hypermobility. um We also see a lot of gastrointestinal disturbance. And again, there's a whole host of GI um symptoms and and conditions that might co-occur with hypermobility.
Sophie Shephard: And the last one,
Sophie Shephard: dysautonomia, which again would capture our orthostatic intolerance and ah POTS and these other sort of related conditions. So that's in the context of our hypermobility disorders.
Ollie: I see.
Sophie Shephard: um But what we also see is kind of kind of a similar thing when you're looking at sort of pain and fatigue, where we also have kind of this this group of what we call central sensitization syndromes or central sensitivity syndromes, which are these overlapping conditions that are thought to come about because of this sort of central
Ollie: Mmm.
Sophie Shephard: NEI dysregulation. And this is where we might clump together things like fibromyalgia, IBS, TNJ pain, migraine, chronic fatigue syndrome, restless leg syndrome.
Sophie Shephard: Basically, these these this collection of conditions that we we do see kind of go hand in hand, but the the exact relationships aren't quite well understood. And often the delineations between the different conditions aren't great. Like there's no specific thing that we can kind of use to diagnose them. It kind of is based on patterns.
Ollie: Yeah, and so you've you've mentioned there's been an evolution in diagnostic criteria and that there's so many of these overlaps between these different syndromes and conditions that we can describe.
Ollie: it It does often come down to the practical effort of just diagnosing something. And so when it comes to ME-CFS on its own, to the exclusion that you even can of other things happening, how is it now diagnosed? So it's like, what what do we do?
Sophie Shephard: Yeah. So the again, like we mentioned before, the clinical diagnostic criteria has changed. So unfortunately there isn't just one blood test we can do. There isn't one, you know, formal test that will say, yes, you have it or no, you don't.
Sophie Shephard: So at the moment, diagnosis of ME-CFS is based on the presence of clinical symptoms and And as we mentioned, there have been different iterations of clinical criteria that are used.
Sophie Shephard: The ones that were used previously were probably a bit broad and didn't capture that post-exertional malaise as a core aspect of it. So they've kind of been ah dismissed.
Ollie: No, no, no.
Sophie Shephard: So the current ones um all kind of have the core symptom as being post-exertional malaise. um in association with other um symptoms like cognitive dysfunction, sleep disturbance, and sometimes orthostatic intolerance. So as at the moment, the three kind of main ones that are still in use is ah the canadian Canadian consensus criteria and the international consensus criteria were two ones that had been defined sort of early in the 2010s, I believe.
Ollie: Mm-hmm.
Sophie Shephard: Um, they are They have PEM as a core criteria, but they've been recommended more in the research setting because they are a little bit more complicated to use for clinicians. So they're kind of used more in the research setting, whereas the one that's currently endorsed by the CDC, but also by organizations like Emerge Australia, are the IOM or NAM criteria. um So um these are the ones that have been recommended for clinical use because they're reasonably straightforward and they have been designed specifically for clinicians who might not be experts in these areas. So they're a little bit more accessible.
Sophie Shephard: um So yeah, it's it's basically assessing these criteria against that. And the criteria are actually pretty readily available. If you go to the Emerge Australia website, they have links to it. um So it's fairly straightforward and very,
Sophie Shephard: and you know from a physiotherapy perspective, for example, even though, of course, like when it comes to diagnosis, we always want to be collaborating with someone's team. um When you look at the criteria, there's actually a lot of the criteria that as physios, we're able to kind of comment on and actually go, yeah, actually this matches with their either their physical assessment measures or their subjective symptoms. So We can actually kind of really support a diagnosis even as a physio to say, you know, they would be kind of inconsistent with these clinical criteria.
Sophie Shephard: And it used to be sort of assumed that ME-CFS was diagnosed in the absence of other conditions, but actually in recent years where kind of um it it has opened up and it's actually not necessarily a diagnosis of exclusion, it's it can be diagnosed in conjunction with other conditions. And I think a big part of that, ah you know, there's probably other reasons, but I think a big part of what has made that possible, I guess, is the fact that it's really honed in on that post-exertional malaise as that characteristic symptom, um which is a good point to pause because I realize we've thrown that around a little bit and we haven't actually really gone into it yet.
Ollie: We have, what is it?
Sophie Shephard: But, you know, maybe so that we can unpack PEM a little bit more, ah how would you explain PEM, Olly?
Ollie: This is one that you and i talk about every day and unfortunately we know in ourselves too well. find it a bit tricky because even the definition itself is maybe interpretable in different ways, but technically it's a delayed, which is one of the key things. doesn't always happen straight away and disproportionate.
Ollie: So it happens a bit after whatever you do and it's a bit disproportionate to the amount of what you do. And it's this worsening of symptoms of various types that we'll talk about um after any form of physical cognitive, emotional, or sensory environmental exertion.
Ollie: So i think this is the really nice thing is that it zooms out as as we often talk about, not just from physical exertion, you know that you can be upright as we've talked about with postures or walking or doing anything with your body, but you can be sitting still or being upright and and using your brain, you know doing cognitive tasks on the computer and
Sophie Shephard: Hmm.
Ollie: having the sensory load of the bright light and that itself may induce PEM, which is not what you know many of us out there might expect or even be aware of. So this definition allows us to zoom out and see these effects because these symptoms can be which is even more confusing and and cruel in some ways, up to 72 hours in in delay.
Ollie: So when we look at this, you you might not be able to correlate the worsening of symptoms with some of the key exertional triggers.
Sophie Shephard: Yeah.
Ollie: you know You might do a lot on the weekend, feel fine Monday, and then Tuesday or Tuesday evening, Wednesday, just feel whacked and and exhausted and and not really be sure why.
Sophie Shephard: yeah
Ollie: So it's some yeah it's it's it's quite challenging.
Sophie Shephard: Yeah, and it's it's kind of like I think the way that we often hear this described or some one of the things that we might hear when we're talking to patients is, um you know, often people will describe like a crash. They crash or they um it's this really significant like they've just completely fallen in a heap. So like I think everyone has had the experience of doing things or some, you know, ah a big activity or something that they're not accustomed to and feeling tired after, it it goes way beyond that.
Sophie Shephard: It's like, it's like you said, it's disproportionate.
Ollie: Yeah, it's not that.
Sophie Shephard: It's so there's a huge um response that's, you know, way out of step with the amount that was actually done. um And yeah, often that idea of a crash or a flare is what we're looking for. And
Ollie: Something I find tricky with this is that when we talk in academic words, it can be a bit difficult. And so um ill I'll certainly share one of mine, but I think sharing a personal experience can be nice because one thing that helped me that I actually had no idea i was experiencing 10 plus years of PEM in and you know in in different rolling episodes until someone went, this is my experience of PEM. And I went, oh, I get that.
Ollie: Oh, that's what that is. oh okay.
Sophie Shephard: yeah yeah
Ollie: Right. so So like what's what's an experience that you might describe that you've heard from a client or maybe maybe one that you've experienced yourself?
Sophie Shephard: Yeah. So like I, I mean, we've, we've mentioned that we both have our own personal experience. So I guess I can speak to to my experience and I think probably it's also a good insight into, it's not just the tiredness.
Ollie: Hmm.
Sophie Shephard: It's actually a lot of symptoms that can really flare up with this. So it's not, it's often not just the fatigue. It's actually everything kind of flares up.
Ollie: Plus plus.
Sophie Shephard: So like when I was in the worst of my me cfs I first had ME-CFS in my early teens after I had glandular fever. So I was quite unwell with glandular fever, as is the case with with many people. Quite often, ME-CFS can come on after a viral trigger.
Sophie Shephard: um And so for me, it was like I couldn't, you know, I would go to school. and do the basics at school. And I wasn't a sporty kid. Like I enjoyed playing soccer, but I'm not the sort of kid who was like running around nonstop it at school all day.
Sophie Shephard: I was very much like the academic, like sit in the corner, be chill.
Ollie: Soccer's still hard, but sure.
Sophie Shephard: I wasn't playing soccer at school. um
Ollie: Okay, gotcha.
Sophie Shephard: ah yeah So like, you know, I'd come home from school and i would just be absolutely cooked. I'd like, ah I'd fall in a heap that afternoon.
Ollie: Yeah, right.
Sophie Shephard: And what I found was I was stuck in this repeating pattern where I'd just get sick. Like I would, I would have like
Ollie: Yeah.
Sophie Shephard: and And even now for me, unfortunately, the last six months, I've kind of had a bit of a relapse in terms of my ME-CFS. Thankfully, still a relatively mild one in the scheme of things. But, um you know, one of the things that I first noticed for me is that when I've overdone it, um I may not get as much indication at the time.
Sophie Shephard: i might It might feel okay, aside from the little annoying bit in my brain that goes, you know better than this and you're probably going to pay for it later.
Ollie: Warning.
Sophie Shephard: Yeah. But I just very conveniently shove that to the side because I don't, that's future Sophie's problem.
Ollie: Yes.
Sophie Shephard: um
Ollie: ah Same.
Sophie Shephard: but But, ah you know, my warning might be that I get to that evening after I've done something and suddenly the best way I can describe it, and this is just for me, everyone's experiencing different, but it's like, um you know, like the night or the day before that you get like a ah flu or something and you kind of get to the end of the day and you're like,
Ollie: Yeah.
Ollie: Uh...
Sophie Shephard: my throat's a bit sore and scratchy and like maybe I feel my glands have come up a bit and I just feel really off. Like I just feel yuck.
Ollie: Yeah.
Sophie Shephard: I feel flat. That's sort of like my, i say warning sign. I don't know that it's that helpful as a warning because usually by that point I've well and truly cooked it and I know I'm in trouble the next day. But like that's usually kind of how I feel.
Sophie Shephard: And and often how I feel in a PEM flare is like I feel like I've got the flu. So most people have that feeling or have had an experience of having a really bad viral illness or the flu where you're kind of, you just feel disgusting.
Ollie: yeah
Sophie Shephard: You feel really lethargic, your whole body aches, you know, you feel sick. You, you just feel really, really off.
Ollie: can't think all of it and you can't sleep, right?
Sophie Shephard: Yep.
Ollie: Like it's restless sleep, disturbed sleep, all these things that we hear in this diagnostic criteria.
Sophie Shephard: Oh,
Sophie Shephard: Yep, absolutely. and And you'll often hear from people, you know, i think sometimes there's that conception that if you have ME-CFS, you're constantly sleeping through the day, like you you just sleep all the time.
Ollie: ah No.
Sophie Shephard: And like certainly sometimes people might be getting a huge amount of sleep and it's non-restorative, but actually a lot of people experience, I like the term like tired but wired. So this feeling of just being really exhausted, but they actually can't switch off and they can't actually...
Ollie: Bingo.
Sophie Shephard: you know, this, this system is so amped up that they can't actually settle to get to sleep or they, or they have a lot of trouble. So it's, yeah, it's certainly not as clear cut as that, but what about you? Like, cause I know you've had your own experiences with PEM.
Sophie Shephard: How, how does that, that sort of relate to your own experience or are there maybe different ways it's shown up for you?
Ollie: Yeah. Yeah. It's quite like, it's similar in some regards, but one thing I think that's probably helpful in our unique experience to allow anyone that's listening and whatever context they're in to be really open to the,
Ollie: diversity of PEM experiences is is that i I don't so much get the fluiness, the immune, um ah you know, gland increase or anything like that.
Sophie Shephard: Yeah.
Ollie: what i What I noticed, I think, and especially in more recent years after COVID and having a sort of long COVID-esque ME CFS reflare experience at its worst was that Definitely the orthostatic symptoms. That was a real surprise to me because as someone who's always used physical, you know, activity and exercise and dynamic yoga as a big, meaningful coping strategy in my life, all of a sudden to feel incredibly dizzy, nauseous, and a really stupidly high heart rate after getting out of a forward fold yoga posture. Yeah.
Ollie: um when I could sit and ride my bike stably and feel okay was was a bit odd. But I also just get this, um I think the sympathetic the signs of the sympathetic upregulation have been really helpful for me because I can notice this,
Ollie: um an increase in anxiety and then the moods are very helpful at telling me what what's happening that there is a much more of a gloominess um uh and the cognitive um dysfunction that comes along with it so for me it's this sort of dysautonomia picture combined with a real i think what was initially poorly diagnosed as depression as many people would relate to but it's such a diverse thing and that I think the delayed experience and and just knowing that like you were trying your best but there were key things that you were doing that were perhaps inducing worsening flares of it that you know yeah or for me at least like maybe trying to be a hero on my bike and ride for too long on a Sunday and then going why can't I work on a Wednesday was starting to make sense yeah
Sophie Shephard: Yeah. Oh. For
Sophie Shephard: sure.
Sophie Shephard: For sure. And that's the thing, right? Like, and and, you know, I know we're talking specifically about PEM, but even coming back to just ME-CFS in general, people do experience just such a wide range of symptoms with it.
Sophie Shephard: You know, the headaches and migraines, the mood changes, there has been a known link, you know, some of the mechanisms that might contribute to ME-CFS have also been implicated in mood changes like depression, anxiety.
Ollie: Hmm.
Sophie Shephard: So there's a shared potential link there.
Ollie: Hmm.
Sophie Shephard: Um, but you know, people do experience like lots of sensory sensitivities. They get like a lot of, they can get a lot of like flu, like symptoms, more like what I described before, where they get a lot of what they would feel like if they were sick, but they're not actually, they're not actually sick in the sense of having like an actual infection.
Sophie Shephard: Um, but it feels very similar. um And a lot of GI issues as well, like you touched on as well. So there's there's so much um variation in how people present and, you know, again, multiple systems being involved.
Sophie Shephard: It's not just fatigue. And I guess the tiredness too is is different as well. You know, people often describe a general feeling of tiredness, you know, when people are well and they haven't had ME-CFS specifically.
Ollie: Yeah.
Sophie Shephard: But the fatigue with ME-CFS is a totally different thing. It's like this real like, and I mean, everyone experiences it differently, of course, but it is this very, like bone deep tiredness.
Sophie Shephard: Like it's so hard to describe to people who haven't haven't experienced it before.
Ollie: Yeah.
Sophie Shephard: You know, i think when you're tired, you can push through, whereas with fatigue you you really, you can't.
Ollie: yeah
Ollie: No, no, this isn't co fixable from coffee.
Sophie Shephard: Yeah.
Ollie: I once, I've heard this from a close friend and multiple clients now that really, again, taught me something about my own experiences that it's like being poisoned in a way. um And that's, I think in a word, is like a nice way to push back against any like, well, I've felt fatigue and I could do stuff, why can't you?
Sophie Shephard: ah
Ollie: And it's like, well, because you have no subjective experience of what this is like.
Sophie Shephard: Thank
Ollie: This is very different as we're saying. So when it comes to assessing it, I guess, were like if we're coming back and yeah we're not a doctor and we're trying to get some label on it, I know that the DePaul symptom questionnaire is one that we use a lot of and it's one of the more, there's so many ways to assess this condition, but maybe we can talk about the standard diagnostic approaches that people might have access to out there.
Sophie Shephard: Yeah. So, i mean, as we said, the the diagnostic criteria, the IOM, the NAM criteria are pretty readily available. And so if you're a physio who's working with people or even, you know, another, i guess, more physical health professional, I would say that there's actually probably a reasonable amount of that that you can assess throughout your history taking and your objective assessment that might actually support a diagnosis. So,
Sophie Shephard: um The way that I would tend to handle that in practice if I was working with someone who hadn't already been diagnosed would be that I would um basically write a letter and say, here's the criteria based on my assessment.
Sophie Shephard: Here's what they're reporting. Here's what I've assessed in my assessment.
Ollie: Bingo.
Sophie Shephard: um You know, I believe that this would be consistent with a diagnosis of ME CFS. um But, you know, because, big I mean, the dke the the criteria is pretty clear, but there's always that element of, you know, making sure we've got, you know,
Sophie Shephard: collaboration within the medical team as well and that stuff has been fully considered. So I always just say like, look, you know, would appreciate if we're writing back to the GP, would really appreciate your, um you know, input and, you know, I guess opinion on this. And I found in my experience, usually when mapped out like that, GPs are pretty, you know, pretty receptive and pretty open to that.
Sophie Shephard: um So that that's sort of, I guess, the diagnostic piece. But like you touched on, when it comes to assessing the presence of PEM specifically,
Ollie: Do
Sophie Shephard: But yeah, like there are a few different ways you can do it. I think there's a lot we can get from actually being willing to just sit and actually talk to someone in depth about their symptoms and what they're experiencing because you will, yeah, you will you will really pick up on some of these patterns.
Ollie: that first.
Sophie Shephard: Like I said, you'll often have people who are, I guess like, um, that might report things. I might actually use the language of like, um, crashes or things like that. So immediately that should be like, this is, you know, triggering ah thoughts for me that maybe M is here and we need to be mindful of that.
Sophie Shephard: Um, but I tend to ask about things like, you know, if I was just talking to someone and trying to find out more, just in a more informal sense, I guess, I'd be asking them, you know, do you feel significantly worse or crash after relatively small amounts of physical or mental activity?
Sophie Shephard: um You've got to be careful with using just that question though, because um sometimes people will say no, and that's because they're really carefully managing their activity so they don't tip into symptom flares. So I always ask them,
Sophie Shephard: Do you, you know, do you carefully plan or limit your activity to avoid making symptoms worse because you've noticed that that can happen? So being really careful not to assume that just because someone's been able to get out of that PEM cycle that they're not experiencing PEM.
Ollie: Great question.
Sophie Shephard: It's just that they've gotten good at compensating. um And then just questions like, you know, how much can i actually manage and what are their tolerances, you know, that they can kind of put up with without triggering a crash or or what their actual triggers are? So are there particular situations or activities that they've noticed will tend to correlate.
Sophie Shephard: um And just trying to, I guess, get a sense of the the nature of those PEMEX episodes. So, you know, for them, when do they tend to notice that symptoms will come on or worsen? So what's the delay like? Because it can be different from person to person.
Sophie Shephard: And for them, how long does it take them to actually come out of that flare? Um, and I think that gives us some really helpful information to try and get a picture of what's going on for someone. You mentioned the DePaul questionnaire as well. Um, it's a really good one. The short form, um, to you really like help, I guess, kind of give a more structured sort of objective, um, measure of, um, PEM symptoms. So, so it can be a really good option if you're someone who's starting to look at this, um, as a really nice structured way. I know you've used the DePaul a fair bit. How do you find it to use in practice?
Ollie: Yeah, and I think that's what I'd like. i Whilst using the diagnostic criteria is first and foremost the most like important thing, what something like the DePaul Symptom Questionnaire does, and i know we're about to talk about the CPE tests next potentially, is is that like it it's just a quick way of quantifying it.
Ollie: And for a letter or a report to someone to inform them about this condition that might not be as well informed, it's a way of...
Ollie: imperfectly scoring it and getting a bit of a number because what the first part of, I think firstly the DePaul brief symptom questionnaire does is just go, hey, do you have this or not? Like, is this a mild tiredness like we referred to that anyone can get or is this a disproportionate PEM experience? And then if it is, what the first part does gives us a frequency or or a severity out of four, severity and frequency, sorry, of symptoms that can communicate the range of how intense this is. because
Ollie: Whilst PEM can differ between people to people in types of symptoms, it can also differ in intensity. Some can, on the surface, keep up meaningful participation in jobs and certain activities.
Ollie: Others can be far more disabled. And I think it's important that something as quick as a little one-page screener can communicate that.
Sophie Shephard: Mm-hmm.
Sophie Shephard: Oh, for sure. And I think you touched on a really important point there that there is a huge variability in how people present and the extent to which they're impacted with ME-CFS. And it's actually quite jarring to see how it's graded because I think like like, so if you look at, I think it's the ICC criteria, they talk about rough rough sort of guidelines for what's considered sort of like mild, moderate, severe.
Sophie Shephard: And they say that up to a 50% reduction in pre-illness activity level is considered mild. If you think about someone cutting out half of what they're currently doing, like that to me doesn't, you most people wouldn't consider that mild.
Sophie Shephard: Like that's significant.
Ollie: Definitely not.
Sophie Shephard: So, but then, you know, we it runs the whole way up to the spectrum. So we have people who are more moderately affected who might be mostly housebound because they don't have as much capacity to access the community.
Ollie: Mm-hmm.
Sophie Shephard: And then severe and very severe, um maybe, you know, mostly or entirely stuck in bed because that's where their current limit are and they may need help with even basic bodily functions. So we see people who are, you know, even to the extent where they might require like peg tubes for feeding because the energy of actually physically eating, you know, is is so much that it pushes them into PEM. So, and the challenge we have with ME-CFS is that the people, there is what I would call like the official like research term for it would be like a survivorship bias.
Ollie: Oh my gosh.
Sophie Shephard: Um,
Ollie: Yeah. I was about to talk about this. Yeah.
Sophie Shephard: Yeah, yeah. So maybe for those of you that haven't heard the term before, like, do you mind explaining maybe the survivorship bias?
Ollie: It's no, it's like the, the Victor's right history sort of thing, but no, no, it's, it's a bit more specific than that. Whoever is able to be assessed and, and, and hang around, I guess, other people that we measure talk about and then make informed theoretical decisions about like even the way we talk about a condition a disease like me cfs and so unfortunately i think where a large part of the uncertainty is and having close friends um and and you know colleagues patients who are on the more seriously severe acts
Ollie: sorry, get my alliteration out, spectrum of symptoms, they are the least ah accessible for research for a variety of very you know clear, ethical and pragmatic reasons. And so we just don't understand enough because if someone's stuck in bed, something's obviously horribly wrong, but it's so stigmatized.
Sophie Shephard: Absolutely. And I think it's also a challenge because as clinicians, we also don't see a lot of these patients because they are either not able to, you know, they're not well enough to make it to sessions and and care isn't accessible for them. Or unfortunately, in my experience, like not in my personal experience, but working with patients who have maybe been on the more severe end of the things, like I've had many patients who have effectively,
Sophie Shephard: I don't want to say sworn off, that's maybe too strong a word, but have effectively withdrawn from most medical care because they've had such horrible experiences of being gaslit or or just even from having providers who who can't really help them.
Ollie: Fair enough.
Sophie Shephard: They don't know what to do. There's been no um you know practical support. And so the the cost in terms of energy and financial cost and
Ollie: a
Sophie Shephard: everything else is is not worth it to engage given that they're getting so little back. And so there's a huge chunk of people who are just not seen by health professionals. And as a result, sometimes as health professionals, it's easy to lose sight of the fact that there are people who are out there who are very significantly impaired and and also who are in... um a more limited position to be able to advocate for themselves and to, you know, be more vocal and and visible in the public sphere. So we need to be really mindful as clinicians that that is the reality for a lot of people. And um we don't want to make assumptions on how we should assess and manage just based off the the group of people that we can see.
Sophie Shephard: so
Ollie: No, exactly. Yeah. And it's, and it's a big part of why we do what we do, right? The video calls are there to make this more accessible, but that real pragmatic, um, considerations ah need to be made. And we try to make, to allow access to this, even just to be heard because simple things can make a big difference. And it's, you can see why a condition like this can be swept under the rug largely by the health and research community for so many decades.
Sophie Shephard: Oh, absolutely. and And so, I mean, I guess we've spoken about what ME-CFS is and and PEM
Sophie Shephard: maybe we should talk a little bit about what we do know about maybe some of the the mechanisms underpinning this condition. And and Full disclosure, Ollie and I are not neurobiologists.
Sophie Shephard: We So please you know keep that in the back of your mind that you know we're certainly not experts in terms of the physiological underpinnings.
Ollie: No.
Sophie Shephard: But I think... looking a little bit but about what seems to be coming out from the emerging evidence is actually really interesting and then helpful for thinking about how we translate that to management as well.
Ollie: Hmm.
Sophie Shephard: So what have you seen, you know, in your recent readings and sort of um exploring some of the research in this area, what things jump out at you that you've seen in terms of some of those underpinning mechanisms, Ollie?
Sophie Shephard: Yeah.
Ollie: I think there's the well-known ones that we'll definitely discuss today around energy, metabolism, cellular mitochondrial function, um the immune regulation and dysautonomia vascular changes.
Ollie: But one thing i just that that's come to mind um that is is emerging And I think is is an example of how this condition may have subtypes within it or may have different roads to roam in that you can have different pathologies going on but have similar um symptom or disability experiences as other people with maybe different pathophysiology.
Ollie: yeah that I've seen a bit of is is around um cerebrovascular changes that we've seen some evidence for in those with POTS um where there's changes or reductions in blood flow or cerebrovascular fluid flow in and out of the skull, in and out of the brain that may or may not be linked. um We're not sure. This is all still very exploratory. I think when you're in an early scientific period, um even though this, again, should have been done decades ago, there's ah there's a real...
Ollie: like a it's like a foraging thing when you don't know anything about anything you've got to go digging to see what's what's linked to what and then it's only when you can build up um ah you know different theories and test them and accumulate evidence that we can get a bigger meta theory like we might have with pots you know where we can have some sense of what's going on But I guess the um one thing I can speak of and then i can hand the the tricky mitochondrial chat to you is the immune dysregulation. One thing I've physical experience of for me, all of this was set off very clearly from multiple viruses, um particularly mosquito-borne ones I think I've chatted about on this podcast before.
Ollie: Things like Barma Forest, Chirp. Ross River, which ironically got next to Ross River in Townsville.
Sophie Shephard: Thank
Ollie: And and then you know now COVID and before that, mono or glandular fever. These can lead to either chronic up or down regulations and immune activity. and And anyone that professes to know the functioning of the immune system who's not an academic or specialist immunologist is kidding themselves. So I won't be so arrogant to presume, but it's body complex. And there's different theories.
Ollie: that we can learn from the long COVID literature that you've chatted about. um I know a lot. So for, you know, theories of like ah viral persistence in different tissues um where these different viruses that some of us are exposed to, can hang out in bone marrow or different other tissues in the body that are difficult to find, like even
Ollie: cerebrospinal fluid and the rest. But the immune system can can be really tricky. And because it's linked with the nervous system, anytime it has a tantrum then you the you know or a cough, the nervous system you know catches a flu.
Ollie: But really it comes back, I think what we've talked about, ah what's what's been done a lot is this energy metabolism, cellular talk,
Sophie Shephard: Yep.
Ollie: what's going on there roughly that that but we know of or how how do you think of it
Sophie Shephard: Yeah, so I guess probably one of the, I would say one of the more predominant sort of mechanisms that are thought to be underpinning in the CFS that i've I've seen in the literature has been around this idea of cellular energy production and and that relates to changes to the function of the mitochondria.
Sophie Shephard: Most of us, if you're anything like me, have this ringing in the back of your head from like high school days of like, hopefully we hopefully most of us have heard of what the mitochondria are. Ollie, what is the mitochondria?
Ollie: the engine of the cell.
Sophie Shephard: The powerhouse of the cell. Yeah.
Ollie: Now I have to the cell. There we go. Yeah.
Sophie Shephard: Yeah.
Ollie: Sorry. Bad, I'm bad. High school science teacher.
Sophie Shephard: No, that's fine. it's yeah I've just got that. I feel like so many people, particularly of our like generation, have just had that drooling to us. I don't know if it was part of the like. Yeah.
Ollie: Must've been every biology textbook we all had. I actually remember that now powerhouse of the cell powerhouse cell.
Sophie Shephard: Yeah, but mitochondria is the powerhouse of the cell. So the mitochondria is the part of the cell that is involved in energy production and and in the form of ATP. So ATP is just the scientific form of um name for the the basically the molecule that is used to provide energy during activity.
Ollie: Mm-hmm.
Sophie Shephard: So ah the research has shown that people with ME-CFS actually do have impairments to cellular metabolism and how the mitochondria function. There have been different changes that have been identified. Some of them relate to the actual structure and the receptors on the mitochondria. Others relate to sort of more the overall function and sort of the processes.
Sophie Shephard: There was a systematic review that was done a few years ago, I think in 2020, that tried to kind of look at all the studies that had been done and they did find that there were quite a few studies that showed changes and variations, but there was sort of not yet one consistent sort of thing that had been identified. So there seems to be this knowledge that there is an impairment in the production of cellular energy, but the exact reasons for why that happens may be still being explored.
Sophie Shephard: um So what that means is that when we're going about usual day-to-day activities where our cells would normally create energy in a normal fashion, people with ME-CFS have less capacity for that and it means that they more readily tip into what we call our anaerobic um sort of energy production. And this is like...
Sophie Shephard: The difference between, well, for for the average person who doesn't have any, um you know, health health health issues, if you think about the, you know, going about your day-to-day activities, maybe gently walking or moving up and down through the day, that all happens within usually an aerobic sort of level of activity.
Ollie: Grab Cycle.
Sophie Shephard: So our cell is able to kind of um use oxygen to kind of steadily tick over without too many issues. Our anaerobic threshold is what happens, for example, if you were to run breakout into an all-out sprint when you can only go for a certain length of time and that's because you've tipped over into that anaerobic threshold, you're you're not able to sustain that for any long period of time and your body's relying on its built-up glucose stores.
Sophie Shephard: So you very quickly fatigue and you can't sprint for more than, you know, sort of 10 to 30 seconds at a time. You know, you just you just can't. So, so And it's thought that that has a big role in ME-CFS, that we just don't have that same level of cellular metabolism and it's harder. So, you know, things through the day are more demanding on those stores.
Sophie Shephard: And it's thought that that could contribute to PEM. But as you said, we do also have those other immune and endocrine dysregulation.
Ollie: And
Sophie Shephard: So there is known immune dysfunctions. um There's also indications that the body's immune system might become a bit more reactive even to itself. So we get autoimmune changes. um and also broader changes within the the whole system so we see that like the what we call the hpa axis which is involved in our body stress response systems are dysregulated so um it's a ah known finding that for people who have macfs there's actually this um reduction in the body's ability to produce and use cortisol um and cortisol is important because it's while it's a stress hormone it's it actually plays a really important role in regulating our metabolism and our blood sugar levels.
Ollie: one on
Sophie Shephard: It helps reduce inflammation and it helps maintain blood pressure. So if we are having disruptions to that, we can see very quickly how that might start to affect lots of other things. So like there's a few things going on. i don't know if there's anything jumping out at you, Ollie, that like we haven't sort of touched on. are Is there anything else that you can think of that's been mentioned?
Ollie: I think one thing that's maybe just timely for the ME-CFS nerds out there from a ah Rob Wust study recently published, and there's, I think, really exciting ongoing work here, is an example of where some of this and and maybe even new findings around the physiology of this are particularly found under the microscope in the muscle.
Ollie: So with people with, I think, long COVID as a variation of an ME-CFS presentation, they found what I think is specifically amyloid plaque, which is a lot of the, um it's like a waste protection by-product ah that can occur in the human body, usually seen in the brains of those with Alzheimer's, but it's found within the muscle fibers, interestingly, and at the junction of some of the blood vessels within the muscle fibers,
Ollie: of those presenting with this condition and it correlated with the severity of exertion physically in these muscles, which was really interesting to literally show that the muscle cannot handle the strain that it's going under. And it induces quite a disruptive pathophysiological change to it.
Ollie: It's like every time you you drive your car, the oil leaks all over the tires and then you have to keep refilling up the oil and it just causes this downward spiral. So it was, i think, really justifying as an example of,
Sophie Shephard: Hmm. Hmm.
Ollie: one of many, probably thousands of pathophysiological processes going on in the bodies of those with this presentation to show that there's something very clearly happening that limits here.
Ollie: um and And whilst those of us that have felt this or that know people with it know this, these i think all of this evidence that we've discussed and we and hope and know that more comes, it just shows that there's a there there.
Ollie: and And that when we see something happening that disables people so much, it can only be obvious that there are a range of things driving it, um is what I keep coming back to.
Sophie Shephard: For sure. And I think that's the thing too, is that a lot of the research we have, it's obviously evolving. So we don't fully understand this stuff. The other challenge we have is that there's so much overlap between ME-CFS and a lot of other conditions that it gets really difficult sometimes to unpack what aspects are specific to ME-CFS versus potentially shared with other conditions.
Ollie: harder to leap.
Sophie Shephard: And so some of these changes that we see, like some of the you know, changes to um the HPA axis, for example, or to autoimmune processes or immune dysfunction, we also see these changes in other conditions as well.
Sophie Shephard: So it's sort of, there's potentially an explanation for some of that shared symptomology, but it's also makes it hard to unpack and go, hang on, what's what's actually happening here? And it, yeah, it gets a bit complicated to kind of unpack.
Ollie: a
Sophie Shephard: And I guess, like you said, all of this really just highlights that it it certainly shows that there is a physiological process to why these symptoms are happening and why some of those outdated views of ME-CFS is just a deconditioning or a psychological sort of event is just so wrong.
Ollie: Mm-hmm.
Sophie Shephard: and And we need better understanding from health professionals that it goes so much more beyond that because, um yeah, it's really easy and for people to be invalidated, you know, to have these very real symptoms sort of dismissed, even though there's some very real sort of changes happening that contribute.
Ollie: Totally even harmed, right?
Sophie Shephard: yeah, absolutely.
Sophie Shephard: So like we've talked a bit about the complexity and I guess what ME-CFS is, but it's clearly complex. It's evolving. We don't necessarily fully understand the ins and outs exactly at a neurobiological level. and And hopefully that continues to evolve so that maybe down the track, we will have more specific medication, for example, and, and you know, there are opportunities there to, from better understanding some of those nitty gritty biological considerations.
Sophie Shephard: But I think for me as a physio and and for you as well, like it's it's about bringing it back to what do we do with this knowledge practically like and how do we use it to inform assessment and to inform management?
Ollie: Mm-hmm.
Sophie Shephard: And I think we've touched on a few of these things already. So i guess like from an assessment perspective, we spoke a little bit about how we might assess PEM specifically, but I think it It kind of just reiterates that when we think about all of the different potential triggers for PEM, when we think about the ways in which ME, CFS and chronic fatigue symptoms symptoms impact on all aspects of someone's life and all the different systems that might be involved, I think it really highlights that we really do need to take that sort of person-centered approach to assessment um and to really make sure that we're taking a comprehensive history and we're really considering the whole person. So
Sophie Shephard: What are those biological, psychological and social factors that are playing in and really taking the time to get a good history and understand that better? um
Sophie Shephard: the things that I would say is that if you're a clinician who's working in this space and you are seeing someone who has chronic fatigue symptoms, it's really important that we don't automatically assume that it's chronic fatigue syndrome um or that it's ME-CFS because, as we mentioned before, there are a lot of
Ollie: point
Sophie Shephard: conditions that present with fatigue as a symptom. um And it's really important that we've actually screened for and ruled out other potential causes because there may be stuff going on that, you know, can be um quite serious sometimes that we need to make sure that we're not missing anything and just kind of writing it off as ME-CFS.
Sophie Shephard: It may explain a lot of symptoms that people experience, but it's important that people have actually had appropriate workup and it's surprising how often that hasn't happened. So i
Ollie: That's a great point. Yeah.
Sophie Shephard: Yeah. I mean, I always just start with the basics when I'm seeing someone who is coming to me for chronic fatigue syndrome. So I always just ask people, um I guess, where they're up to in terms of their medical assessment. So have they actually seen a GP recently um or any specialists? Like who have they actually spoken to about these symptoms?
Sophie Shephard: um But also just to check things like have they had blood tests done recently? So because blood tests might show what we call organic causes of fatigue. So things like anemia, anemia, um or low iron, um if there are autoimmune or inflammatory markers going on, those sorts of things.
Ollie: Yeah, those are important.
Sophie Shephard: So we still need to be mindful that we're screening for red flags and fatigue should be considered, you know, particularly if it's accompanied by a lot of different systemic unwellness, like that is one of our red flags.
Sophie Shephard: So we need to make sure they have seen their GP and they've been appropriately screened for this sort of stuff. um And that's a really important start point, I guess. But it thinking about then, assuming that that has happened and we're sort of satisfied that there's nothing more specific that's going on, um what would be some of the things that are core to your assessment, Ollie, that you'd be thinking of?
Ollie: Well, for me, and and I know it's the same for you, it's it's finding this is where there's sort of an ideal in in quotation marks for anyone that's not watching.
Ollie: An ideal for me, I think, for the sake of the person. And then it's always making that flexible. If PEM can come from a variety of exertion types and we're less able to measure the exertion types like cognitive or particularly sensory and environmental. I think that gets harder because it's less we're less conscious to it.
Ollie: Something like activity diary is is one that's thrown around a lot in the community um clinically and and those living with it. But the key here, I think, is walking the middle line between getting enough data to make it useful ah to to enact stabilization of symptoms, which is always our first.
Ollie: I remember you saying to me, like, first stabilized symptoms do no harm, then talk about the night, you know, like progressions and all that fun, ambitious stuff.
Ollie: The finding a stable baseline of symptoms can be done off less, maybe tracking when you think, but enough. and And that's where maybe certain apps can come into place.
Ollie: There's a million ways to do it. And I think we're still learning, but you need enough because the cost, I think in one, one that we've maybe experienced is is measuring too much that the assessment for where the exertion's coming from becomes an exertion itself.
Sophie Shephard: Yeah, and huge. And I think that's a really, that's a really key point. and I love that you've brought that up because even just giving people questionnaires, like if that, that in itself can be like quite a trigger for, you know, if people have to sit down and do a really lengthy questionnaire, some people that can actually be enough to trigger a pen flare.
Ollie: Not another one.
Sophie Shephard: So we do have to be really mindful of adapting our assessment to the person we're working with. But I think what you're capturing really nicely there is that because no two people are the same,
Sophie Shephard: it's really about trying to work out where their unique tolerances are because the only way we're going to understand that is by getting a really good history and and kind of understanding that person's experience. And to do that, we kind of need to take the time to understand what does their life look like? Like what are their demands? What are their goals? What do they have to do in a day?
Sophie Shephard: What have they noticed are their unique triggers? what What do they know that they can tolerate? What adaptations have they put in place already? And I think that's an important thing too. Like one of the things that has really annoyed me when I've tried to access care for chronic fatigue in the past or or even other health conditions, but I hear this a lot from patients, is if you're a clinician, start with the assumption that the person you're working with actually has a pretty good understanding of their own symptoms and has actually put work into solving it because exactly.
Ollie: bingo yeah they're doing their best
Sophie Shephard: And so often people have actually worked out, you know, like, I don't know, maybe it's a me thing, maybe I'm sensitive to it, but I know that I've had shared feedback from patients as well, where if we just come in and start immediately talking and assuming that they don't understand pacing or that they don't understand, oh, we need to cut that back, it can be so frustrating because often they actually really understand that that's what they need to be doing, but it's just practically difficult to implement.
Ollie: gosh
Sophie Shephard: So Start with the assumption of like competence and understanding and work backwards from that and and check what people might need from you in terms of filling in those gaps and and recognizing their existing strengths and coping strategies because there's actually a lot of helpful stuff that we can build off. Yeah.
Ollie: It's a goldmine. And I think the more I lean into that, the more I'm appalled at past Oliver for not recognising that. And also just ah bemused, amazed as to how it's not that common in any healthcare experience. Like I think the assumption that most practitioners go in with is this patriarchal power imbalance of I know better than you.
Ollie: But how could you ever know the person's life and their coping mechanisms better than them? And so for me, it's like I'm just like ah I don't know, like an overqualified tour guide that wants to be a really good counselor first and just go like, can you teach me about you?
Sophie Shephard: Yeah. Yeah.
Sophie Shephard: yeah
Ollie: Then maybe I'll see if I can help.
Sophie Shephard: For sure.
Sophie Shephard: another thing that I didn't mention when I was talking about screening is knowing that things like orthostatic intolerance and POTS go hand in hand with some of, you know, ME-CFS and can be a common contributor
Sophie Shephard: um Part of what is always part of our assessments is is screening for the presence of some of these more discrete components. So, for example, if I was seeing someone with ME-CFS, I would be deliberately screening for orthostatic intolerance and potentially considering specific postural testing to assess whether someone has POTS.
Sophie Shephard: um or orthostatic intolerance because there are specific management components of that. Not everyone who has ME-CFS will have that, um but if it's there, it's a really helpful thing to pick up. And of course, if people have other comorbid conditions, like if they do have an autoimmune thing going on or if they do have other conditions, it's really important that we're helping someone like ensuring that those things are actually appropriately managed as well.
Sophie Shephard: Um, because they're all going to be contributing to ongoing systemic load that could be contributing to fatigue symptoms.
Ollie: Yeah.
Sophie Shephard: So that's really important. Um, so yeah, so that's part of it.
Ollie: All said.
Sophie Shephard: So you mentioned activity and and we're going to kind of talk about pacing and that sort of thing as well. Um, ah you alluded to controversy. Yeah.
Ollie: and du da
Ollie: So it's little to no secret. I think we might've even mentioned this a few times or alluded to it that One of the, and I'm just almost disgusted to say that it even was, a gold standard management approach to ME-CFS was the combination of two particular strategies.
Ollie: Graded exercise therapy and cognitive behavioral therapy. These were based off the assumption that there was no particular pathophysiological biological driver for these symptoms and that it was alterable i just it baffles me even trying to say this without laughing um that it was changeable by changing their thoughts um and sort of self gaslighting and then
Ollie: progressively increasing exercise. And I think the key here, because one of the things that is a difficult nuance is that graded exercise therapy doesn't mean that all forms of graded progression are bad.
Ollie: So we'll come back to that, but graded exercise therapy said is is a very rigid doing a certain extra percentage of whatever activity that the person was prescribed on a set time schedule.
Ollie: So for example, if one was walking, you're doing maybe 10% more steps a day or a week, for example. And the pace truck was the one that that tested this at at scale um and supposedly said that it worked really well, but didn't so much.
Ollie: um
Sophie Shephard: a
Ollie: what What happened, Soph?
Sophie Shephard: Yeah, so there was a whole thing with the PACE trial. um Some of you might have come across it if you're someone with ME-CFS. A lot of people have actually heard of the PACE trial. um and And just to reiterate there, exactly how you described it, Ollie, I think captures it, is that this graded exercise therapy and cognitive behavioral therapy, they were both based on the assumption that chronic fatigue syndrome was predominantly a deconditioning and that was perpetuated by
Ollie: Mmm.
Sophie Shephard: fear avoidance. So basically the person was so fearful of moving and exercising that they ended up in this vicious cycle where they just got more and more deconditioned and then that worsened symptoms so they became more fearful. So it really like psychologized the symptoms. It really like I guess ignored all of the biological bits that we've already spoken about that we know are are happening. So It was sort of based on some pretty sketchy sort of stuff.
Sophie Shephard: The PACE trial was a really big UK trial um that was actually funded by a government grant and it looked at comparing a few different interventions for ME-CFS and assessing recovery and outcomes. so So one of the key um sort of interventions was the combination of graded exercise therapy and CBT.
Sophie Shephard: um And they compared that to regular care as well as what they called adaptive pacing, which is more in line with what we're going to talk about in terms of our pacing and working within the energy envelope. But basically they came out and said that CBT and GAT are effective and have greater recovery rates for ME-CFS than any of the others.
Sophie Shephard: um And it was published and it pretty quickly came under significant fire. There was a lot of criticisms around the conduct of the trial and the way in which they'd sort of gone about the, I guess, the actual design of the trial.
Sophie Shephard: There'd been concerns that the outcome measures they were measuring had changed mid-trial. So what they usually, good practice from a research perspective is to sort of say from the outset, before you do it, this is what we're assessing, this is how we're going to do it.
Ollie: Right.
Sophie Shephard: And that is to kind of ensure the validity and um I guess try and reduce bias so that we're not just deciding what we test once we see what results come out. It's ah it's a pretty basic measure of good science.
Sophie Shephard: Outcome measures were changed mid-trial um and because of that shift, there was a weird sort of um overlap in the data where the baseline scores for pain and fatigue that kind of allowed people to be eligible for inclusion in the study um because of the change at the end meant that they could be classed as both disabled and recovered based on the the levels of, um you know, scores on that.
Ollie: Schroding is ME CFS patient.
Sophie Shephard: Yeah, there was also concerns about, you know, the the clinical criteria that was used for inclusion. So we mentioned that some of the clinical criteria um that are used to diagnose ME-CFS, not all of them require post-exertional malaise as a core feature.
Sophie Shephard: And so this was another concern that um there was potential because of the criteria they used that they might actually be including people who had chronic fatigue, but not necessarily chronic fatigue syndrome and PEMP.
Sophie Shephard: So trying to kind of make judgments about what's appropriate or not appropriate based on that mixed cohort is is a challenge. And there were also other concerns about conflicts of interest that weren't disclosed. um There were concerns about, um I guess, the transparency of data and the availability of data.
Sophie Shephard: um
Ollie: That was a big one in the end, wasn't it?
Sophie Shephard: It was huge, yeah. It was like five years of basically um freedom of information requests before they were finally you know made to basically release some of the extra data for secondary analysis. and ah And a follow-up analysis of the data that was released basically found that when they tested it against the original outcome measures and actually kind of stuck to what the authors said they were going to do at the start, that there was actually no evidence of GAT and CBT being more effective than the other interventions.
Sophie Shephard: um The intention to treat analysis found that, yeah, there was no significant difference in recovery rates between groups. um And actually, when you looked at the data, the the rates of increased disability benefits and sick pay that participants were receiving was actually increased post-treatment for those who had ever gone...
Ollie: How inconvenient.
Sophie Shephard: So like there was harms. and And of course we had consumer groups who, and people with these conditions themselves who really were quite vocal about this study when it came out, because it did not map with their experiences at all. And they said, I've done GUT and this was really harmful for me.
Sophie Shephard: And that wasn't really captured. So there was a really big backlash against it. um And it's actually really important that we kind of acknowledge that because, you know, if you see this really big study outside of the context, you might look at it and go, oh, that's great. This is, this you know, GUT and CBT. This is a good big ah RCT that's been done. I can use that for my clinical guidance.
Sophie Shephard: But actually, um it's been so recognised now that um there is a real risk of harm with GAT that um even the updated NICE guidelines, which you mentioned before, which were released in 2021, have specifically recommended against any therapy based on physical activity or exercise as a cure for ME-CFS.
Sophie Shephard: um So we it's actually actively recommended against, which is quite different to the approaches that we are recommended for. you know If we think about most physio or exercise physiologist interventions for most chronic health conditions, graded activity is actually a core part of managing lot of things.
Ollie: a
Sophie Shephard: um But we know that you know that graded exercise therapy really does have a risk of triggering PEM and that can actually cause long-term deterioration and harm because people don't always recover fully after a PEM episode.
Sophie Shephard: Like there's no way
Ollie: This is probably the most important thing.
Sophie Shephard: Yeah, it's part of doing no harm, right? And I've spoken to people who have been really seriously harmed long-term because they have had a very well-intentioned physio or EP who's given them an exercise program and it's just not been tailored at the level that they're at and it's triggered a pen flare and they've really been set back.
Ollie: yeah
Sophie Shephard: So this is where you touched on it before, this idea that actually from a management perspective, we have to stabilise first. um And for a lot of people with ME-CFS, depending on the severity and how they respond,
Sophie Shephard: there may be people for whom we're actually never going to be able to meaningfully increase their activity. Graded exercise may not be an option for some people and stabilisation and sort of optimising function within their tolerance may be as good as we get for some people. And that sounds very bleak and I don't like to, um I guess, take away hope, but...
Sophie Shephard: The reality is that even with the best management, there is a not insignificant chunk of people with ME-CFS that continue to experience persistent symptoms. And if we go into working with people who have these conditions with the assumptions that we are going to be able to fix everyone,
Sophie Shephard: um we just run the risk of really, um A, I think giving, there's nothing worse than as a patient to be given false hope. um So we have to be realistic about those expectations and make sure that we're clearly communicating this.
Ollie: Yes.
Sophie Shephard: But also as a clinician, it's important that we don't have that in our heads because if we are expecting that we're going to be able to fix and solve every everyone that comes to see us, that's setting us up for distress and for, you know, the emotional toll of not being able to help cure everyone. And that's like, it's a whole conversation in itself.
Sophie Shephard: But yeah, I guess how, how has that been for you, Ollie? I mean, going into this space, it is so different to how we're taught a lot of the time. Has that been a significant shift for you?
Ollie: Definitely, definitely. And I think I've learned, I've been grateful to learn through my own personal experience and have a bit of skin in the game because the costs of pushing and just sort of, she'll be right, toughen up, get through it, which is I think, the central coping mechanism of like a, you know, I won't throw too many names out there, but it's definitely within sort of like ah I don't know, Western, certainly Protestant-based capitalistic culture where there's just like, just push through and and like those values ah and behaviours are lauded that that has serious costs. And whilst it can be maybe a bit down in the dumps or not as hopeful to to to say honestly that
Ollie: management is is the healthiest expectation here. I think seeing the costs of what this has done to so many lives that you and I have been but able, the privilege to help and chat with, being alongside, you recognize that actually just to stop something and and stabilize it in its tracks is monumental treatment enough. you know it's it's And I think when you look at the impact of the quality of life of what this condition is like in comparison to things like, um you know,
Ollie: certain variants of terminal cancer, end-stage chronic kidney disease, um um multiple sclerosis, it's on par if not higher. And I think and it really puts into perspective that we we wouldn't profess to go, oh, can't just heal someone's chronic kidney disease.
Ollie: But if we were able to stabilize it and mitigate further decline, that would be a massive win. But in this circumstance, through a misunderstanding of what it is,
Sophie Shephard: Thank you.
Ollie: And and the you know the baggage of the past, we can quickly take that forward. And it's something I've just gone, oh, it's actually a massive win to pause it. Because like i could have been could still be a lot worse, but I'm not thanks to these pacing, stabilizing strategies.
Sophie Shephard: Absolutely. and And, you know, and and certainly to provide like, I guess, a bit of a balanced view of that, certainly I've worked with patients who have improved and, you know, ah yeah it's, yeah, it's possible.
Ollie: Yeah, that's the thing. It's possible because of it.
Sophie Shephard: And sometimes that that dropping activity back and really kind of working to pacing, it can be really hard to do. And for some people, if they can stabilize enough that they're then in a position where their body does actually tolerate slowly and very flexibly increasing activity,
Ollie: Mm-hmm.
Sophie Shephard: And I say that that's very different to GET. We're not saying that there's a fixed incremental plan to bump up activity. It's often ah it has to be flexible and it has to be tailored to that person's current tolerance because we need to avoid PEM. So for some people, they do kind of they they can get to the point where they're able to kind of start to gradually and very flexibly increase their tolerance.
Sophie Shephard: um But that's not a given for everyone. So it's not to say that there's no no hope whatsoever.
Ollie: Totally, yeah. Well said.
Sophie Shephard: It's just that the reality is we just don't quite know until we do it. And um there are certainly lots of strategies that can help to stabilise and reduce further deterioration, but we just don't exactly know how people...
Sophie Shephard: are going to respond once we put these things in place. So yeah we'd mentioned pacing a few times. um Would you mind explaining, Ollie? I know that there's often a few different sort of theories behind this, like spoons theory, those sorts of things.
Ollie: Hmm.
Sophie Shephard: But just like the basic principle of pacing, how we would sort of try to manage activity for someone with ME-CFS? Yeah.
Ollie: Totally, totally. um This is where I think it's quite fun because it's, it's pacing can often be a bit of a downer word like homework or, you know bills or something.
Ollie: But to me, if we get the principle behind it, like you're alluding to, we can not get as stuck in the weeds with the, the, what the theories of like, whether it's ah an app or or, spoon theory, really it's understanding the window of tolerance.
Ollie: um that your different systems can have and this is that i think the key thing is that many of our clients and certainly you and i ourselves can have vastly different cognitive windows of tolerance of exertion to physical so we might be able to do very little physical but quite a lot more cognitive or vice versa or a little bit of both again everyone's individual what it requires is an understanding of where that window of tolerance roughly is
Sophie Shephard: Thank you.
Ollie: And then the effort to stay within this mythical, but I believe achievable Goldilocks zone, because as you alluded to, it's really only then when we find that Goldilocks zone where PEM reduces and symptoms stabilize.
Ollie: the the that physiologically we're able to even adapt. Even if you think of something as simple that physios are well-trained in as you know elite sport or certain exercise training mechanisms, overtraining is a massive thing.
Ollie: Bone mineral density issues, you know energy deficiency syndromes that are common in athletes. These are examples of the same problems of not sticking in that window of tolerance properly.
Ollie: And so really it's just the effort to understand it and then stay in it.
Sophie Shephard: Yeah, so that's it that um really, relevant um I guess, relative to the person. Hey, it's like everyone is going to have very different sort of baseline tolerances.
Ollie: Extremely different.
Sophie Shephard: And so i think that's where that idea of getting a good history and understanding of the person's experience is really useful. and
Ollie: Essential.
Sophie Shephard: Um, you'll often hear that explained as like working with within someone's energy envelope. Um, spoons, spoons is often the, ah an idea that people have come across before the idea that you've only got so many spoons in a day and every activity might have one or more spoons associated with it.
Ollie: Yeah.
Sophie Shephard: And so you've got a ration your spoons out personally for me, for me, i mean, I've had patients who have really liked that example.
Ollie: Totally.
Sophie Shephard: It's not a bad one for me.
Ollie: Yeah.
Sophie Shephard: I find spoons a little bit too abstract. I find, um, the, the idea of like borrowing money is a good example. Like, similar but different where it's like okay you might have a budget for a day let's say that you've got a hundred dollars to spend in a day and each of the activities that you do whether that's physical cognitive might have a certain dollar amount attached to it um you probably can push through and use all your money you might be able to maybe take a loan from the from the next day the trouble is that you're borrowing from
Ollie: Right. Yeah.
Sophie Shephard: you know, tomorrow's money, you're accruing interest, and then suddenly you're getting yourself more and more into this debt hole, which might be more that sort of PEM idea. um
Ollie: Perfect analogy.
Sophie Shephard: And it gets really hard when you're stuck in that debt cycle where you're kind of borrowing and then suddenly you have your repayments get bigger and you, yeah, it just becomes a mess. So that's sometimes that is a slightly, ah for for me, I find that an easier way to wrap my head around it, but I know some people who really like the idea of spoons.
Sophie Shephard: Yeah.
Ollie: Yeah. And I think it's like, but with the money side of things, it's like the notion that it's flexible too, right? Because like fuel prices go up and down every day, all the things we buy and and the amount that, you know, that we have in our bank accounts and are able to earn, and go up and every day. And so I think it's just, whenever we use an analogy or a model to me, I get really shitty when something isn't as close to reality as possible. Like if you use a map and it forgets to tell you that there's a massive hill that you've got to walk over and you presumed it was all gonna be flat, you're probably not gonna like that map very much.
Sophie Shephard: Absolutely.
Ollie: Yeah.
Sophie Shephard: And the other thing like we haven't really mentioned yet, but like there is also a known association with neurodivergence and chronic fatigue as well. And like, so I mean, for both of us, like I'm already HD and I know you are too.
Ollie: Yeah.
Sophie Shephard: So like for me, the the analogies can sometimes be a bit hard and maybe that's part of the reason why I don't gel with the spoons theory because it's just, a it my brain just isn't congruent with that that sort of line of thinking.
Ollie: Not literal enough.
Sophie Shephard: But I mean, that's also interesting. I mean, one of the things I was going to sort of touch on as well is we're talking very much about sort of activity and in the context of not just physical load, but, you know, cognitive load and things like that.
Sophie Shephard: And I think that broader lens, when we know all the things that can impact on PEM, that gives us opportunities to sort of look at specific triggers and also look at managing them.
Ollie: And
Sophie Shephard: yeah. If people do have, um say, particular sensory triggers for them, like if they're very sensitive to light, sound, smells, we can then also try and work backwards from that and go, okay, well, is there a way we can maybe soften some of these triggers? Maybe it's limiting exposure to some of these sensory triggers or using things like sunglasses or noise-reducing headphones or...
Sophie Shephard: you know, other sort of sensory strategies is to try and reduce that. So that's very like particular to the person, but that's also sort of within the realm of stuff we can be thinking about.
Ollie: Thank you.
Sophie Shephard: um i know you mentioned cognitive activities, but cognitive load in general as well. So like, again, thinking about neurodivergence, um often executive dysfunction and cognitive function is a a more challenging area and maybe that's part of why there's this association. It hasn't got great research behind it yet but, um you know, when we think about the amount of energy that goes into trying to keep your day together and to organise things when you do have, say, ADHD or if you're autistic,
Sophie Shephard: That's a significant cognitive load. And so even thinking about strategies to try and offset that a bit, like, um again, everyone's different as to what helps them, but there can be strategies like using um reminders or, um you know, sort of structured lists or calendars to try and offload some of the stuff in your brain in a form where you're not having to hold it and process it all the time.
Sophie Shephard: or, you know, having family members who might be able to help assist with, yeah with reminders or having like visible reminders around your house for different things, or, you know, there's lots of different things that, that can come into it, but some of those actual cognitive strategies to try and offload some of the executive dysfunction side of things can also be, you know, a really big thing.
Ollie: yeah
Sophie Shephard: Is there anything else along that sort of line that you can think of, Ollie, that you sometimes work on with people?
Ollie: it's definitely the unique sensory cognitive stuff but even certain preferences within that because I think one of the wonderful things that neurodivergent folk have taught us has has been that some things may be, may seem potentially triggering you an uninformed observer, like maybe certain physical stims or activities, but, uh, others may be incredibly taxing.
Ollie: So walking down a street, that's a bit busy with everyone wearing very artificial perfumes can induce enormous, you know, sensory overload and even mast cell responses. Like this is all biological, but, um, you know, dancing around, hopping in the back room or,
Sophie Shephard: Mm-hmm.
Ollie: doing everyone's different. i but I don't want to get too specific can can be fine. um And this is something I've noticed that's baffled me is that I can have quite in severe PEM responses from um certain cognitive exertional things, especially I think around work with like riding things. I can talk to people all day, um but then going on my bike for quite a long time because it's rhythmical activity,
Ollie: it's fine and so it's it's just again recognizing the individuality everybody's different um all of these exertions exactly
Sophie Shephard: It's like your your, your, your, it's like your, my your mileage may vary like that sort of level of we just have to we just have to really tailor it to the person's symptoms, but also how they respond to symptoms.
Sophie Shephard: And I think that's where there isn't one clear one size fits all.
Ollie: exactly
Sophie Shephard: It has to be so. person-centered. I mean, that's what comes through when you look at these updated NICE guidelines. A core piece of that is that it has to be person-centered and we need to be considering all of these different aspects of of management. and And I think key to that too, and I'm speaking, I guess, maybe more from that physio perspective as well, is that A big part of it for us, I think, is to recognize that there's there's, personally, I think there's a lot we can do to help support someone who's dealing with with ME CFS.
Sophie Shephard: Like there's a lot of strategies that we've discussed that we can use um that might be useful tools for that person.
Ollie: A lot more.
Sophie Shephard: But it's also about knowing when we need to refer on or collaborate with another health professional. So for some people, depending on their symptoms, we might, or part of their management might also be connecting them. um CBT or cognitive behavioral therapy, as we mentioned before, is no longer recommended as a ah treatment directly for ME-CFS in the sense that it's we don't expect that that would cure it because it's not a psychological condition.
Ollie: no
Sophie Shephard: But CBT, for example, is in the recommendations as a supportive therapy for some people. So naturally, the impact of being unwell and having you know an illness impacting on lots of different areas of your life.
Sophie Shephard: um A lot of people do present with comorbid mood disorders and things like that, depression, anxiety, which again is very understandable. So you know, potentially psychological support might actually be a core part of making sure people are well supported overall, but it's not it's not that we're saying that we do that because we expect that that will cure symptoms. It's just, it's one aspect of making sure people have the support they need overall.
Ollie: For sure. For sure.
Ollie: no, it speaks, I guess it speaks to the that nuance thing because it's something I've seen and um, there's only so much we can talk about. So, uh, like I know we've been going on for quite some time now, but the, the challenge with these things is that because the pace trial was controversial that,
Ollie: that the nuances within CBT or or graded forms of activity still being useful for some people, some of the time, never forced ever, like all those caveats, these absolutist, oh, that's just bad, that's evil. soon as you see those three words, three letters CBT, it's just bad, that it's always, um these things can be there to help in other ways.
Sophie Shephard: Yeah, absolutely. and And I guess that's where some of these more emerging models, you know, we've spoke about the and NEI system before, that interplay of the nervous endocrine immune system, where we are definitely going to do a follow-up episode going into that in detail. But, um you know, I think what's really interesting is considering that idea of allostatic load in this. And so,
Sophie Shephard: just as a really quick like primer for people, um this this model of allostatic load is based around the idea of body homeostasis. So most of the people listening might have heard of homeostasis before, it might be a new term.
Sophie Shephard: Homeostasis is basically the ideal set ranges within our body that we seen within which our body functions normally. So things like We have a normal range of body temperature, core body temperature. We have a normal range of blood pH. We have a normal range of oxygen in our blood.
Sophie Shephard: So it's those ideal ranges that ideally our body likes to stay into to help us function normally. And that doesn't just happen. because it's hard existing in a world that sounded much more profound than intended.
Sophie Shephard: It is hard.
Ollie: It really is.
Sophie Shephard: It is. really is. But, um you know, it's it's difficult to go about life and you're in, you know, constant, um I guess, challenges and threats to maintaining those stable states. And so the body has mechanisms to try and keep us within those ideal ranges. And that's where our nervous, immune and endocrine system all work together to try and maintain homeostasis. And that process is called allostasis. So um allostatic load is what we then use to describe basically anything that our body has to respond to in order to maintain our normal.
Sophie Shephard: So that can be things internal to our body. It can be things like, um you know, considering things like illness or infection or just, I guess, capacity of our muscles. It can be genetics. It can be, you know, all of the biological stuff we might think about.
Sophie Shephard: um It can also be just things that we do behaviorally or lifestyle. So things like smoking and alcohol intake, nutrition, activity, exercise, all those things have a particular load and demand on our body.
Sophie Shephard: um But we can also consider sort of more external things because these have also been known to, ah you know, contribute to allostatic load. So things like our environment, um you know, our built environment, things like toxins, pollution,
Sophie Shephard: neighborhood quality have all been sort of identified as being potential contributors. Temperature, our body is constantly having to adapt to, you know, temperature to keep us um in in line, you know, core body temperature if it's cold or if it's hot.
Sophie Shephard: um and We can also consider the role of things like ah increasingly the role of like exposure to traumatic events and and childhood trauma particularly has been shown to have a huge allostatic load and can really affect that nervous endocrine immune function.
Ollie: Mm.
Sophie Shephard: um But also just socially, like, you know, working conditions and, um you know, relationships with people and social interactions and um occupational engagement, um,
Sophie Shephard: discrimination against people, people who might be more marginalized, um you know, because of things like race and sexuality, like all of these things, pretty much anything you can think of has been shown to contribute to that allostatic load and can therefore place more of a demand on that nervous endocrine immune system. And it's been shown that allostatic load actually does correlate with MACFS and the severity of symptoms. So in theory, that's kind of cool because what that does is open us up to thinking more broadly about the things we can do you if allostatic load has been shown to correlate with fatigue, symptoms and you know overall quality of life in ME-CFS, well then if we can look at that big picture of allostatic load, there are potential opportunities for us to do things that might help reduce symptoms. And that's where I think the research is definitely still emerging. We don't have the best research exploring this yet, but I think there's a really important
Sophie Shephard: biologically plausible sort of link between these things and I guess why that whole of person consideration is important. So, yeah.
Ollie: Well said, well said. Anything that's threatening to our existence is expensive for our physiology and that's not always a problem in our head. It can be societally and biologically in the cell. So um if you're still with us, if you got to this point, ah we're proud of you and we're grateful.
Ollie: um We hope it was valuable. Thank you so much for joining us. And yeah I look forward to chatting with you next time, Soph, and sharing some more info on these complex topics.
Sophie Shephard: Thanks so much. And thanks everyone for hanging in there. We'll hopefully catch you for our next one. Bye now.
