Episode 37: Chronic Fatigue Syndrome
Symptoms of tiredness, fatigue and sleepiness are common in chronic fatigue syndrome. How can these symptoms be addressed and sleep improved in people with fatigue syndromes? In this episode we tackle these questions with the help of Nathan Butler of Active Health Clinic.
Dr Moira Junge (Health Psychologist) and Dr David Cunnington (Sleep Physician) host the monthly podcast, Sleep Talk, talking all things sleep.
Leave a review and subscribe via iTunes
Audio Timeline / Chapters:
00:00 – 01:40 Introduction
- 01:40 – 26:43 Theme – Chronic Fatigue Syndrome
- 26:43 – 27:28 Clinical Tip
- 27:28 – 34:07 Pick of the Month
- 34:07 – 35:05 What’s Coming Up?
Next episode: Sleep in Pregnancy
Links mentioned in the podcast:
- Parliamentary Inquiry in to Sleep Health
- Active Health Clinic
- Emerge Australia
- Let it go – Podcast episode
- 2019 ME/CFS International Research Symposium
- Proposed Mental Health changes – Health Report
- Insomnia Disorder Subtypes – Lancet Psychiatry
- Active Health Clinic Wellness Tribe
Nathan Butler is an accredited exercise physiologist with over 15 years experience working as the coordinator of specialist inpatient and outpatient programs at the Austin Hospital in Melbourne and at the Royal Free Hospital in London in the areas of CFS as well as cardiac, respiratory and orthopaedic rehabilitation. Whilst in the UK Nathan was involved in the PACE study which investigated treatment modalities for CFS and the study was recently published in the Lancet. In 2008 Nathan established Active Health Clinic with his values of long term self management through knowledge, compassion and trust leading to Active Health Clinic being a leader in it’s field.
Dr Moira Junge is a health psychologist working in the sleep field, who has considerable experience working with people with sleeping difficulties in a multidisciplinary practice using a team-based approach. Moira is actively involved with the Australasian Sleep Association (ASA) and a board member of the Sleep Health Foundation. She has presented numerous workshops for psychologists and is involved with Monash University with teaching and supervision commitments. She is one of the founders and clinic directors at Yarraville Health Group which was established in 1998. In addition to her expertise in sleep disorders, her other areas of interest and expertise include smoking cessation, psychological adjustment to chronic illness, and grief and loss issues.
Dr David Cunnington is a sleep physician and director of Melbourne Sleep Disorders Centre, and co-founder and contributor to SleepHub. David trained in sleep medicine both in Australia and in the United States, at Harvard Medical School, and is certified as both an International Sleep Medicine Specialist and International Behavioural Sleep Medicine Specialist. David’s clinical practice covers all areas of sleep medicine and he is actively involved in training health professionals in sleep. David is a regular media commentator on sleep, both in traditional media and social media. David’s recent research has been in the area of non-drug, psychologically-based treatments such as cognitive behavioral therapy and mindfulness in managing insomnia, restless legs syndrome and other sleep disorders.
Need more information about how you can sleep better?
At Sleephub we understand the struggle people endure with sleeping problems which is why we have created a comprehensive FAQs page with information for those seeking information about sleep disorders and potential solutions.
Dr. David Cunnington: Welcome to Sleep Talk, Episode #37, the podcast talking all things sleep. And welcome, Moira.
Dr. Moira Junge: Hello, Dave. Hello, everyone.
Dr. David Cunnington: The theme for this month’s podcast is fatigue syndromes, and in particular chronic fatigue syndrome. We do, you and I Moira, see a lot of people with fatigue syndromes and difficulties with sleep and energy levels, so it would be good to try and tease out some of what is a fatigue syndrome, how does it impact on people, and some aspects around sleep.
So we’ve both been involved in the parliamentary inquiry into sleep. That has been an interesting experience.
Dr. Moira Junge: Yeah, it has been 130 submissions and it’s all wound up. Now, it’s in the laps of the politicians I guess and we just hope we can get something positive out of it.
Dr. David Cunnington:And already, there are some positive things. So an interesting experience for me is that once we had appeared before the inquiry, it very quickly became available in the public eye and that’s exactly what we see. It was transcribed and lots of people have been able to access that and see what the issues are.
Dr. Moira Junge: That’s right. They’re good documents but they might not know the area.
Dr. David Cunnington: So even if we get the worst outcome and there’s not sort of immediately a major change from the politicians, we still have that document to be able to highlight what the issues are.
Dr. Moira Junge: Yeah, and try again in another era probably as soon as possible.
Dr. David Cunnington: And really a strong point for me is I love the patient representation. The narcolepsy and the hypersomnia arena, that was just awesome representation for people.
So the theme for this podcast is chronic fatigue syndrome and how sleep symptoms appear in chronic fatigue syndrome and as well how chronic fatigue syndrome impacts on people and some of the treatment options available.
Now, fatigue syndromes are really common. These conditions are often really debilitating and common in teenage years for a lot of people, around the time they are trying to do VCA or complete their secondary school education.
And one of the real challenges is the biology is very poorly understood. We actually don’t know the cause.
Dr. Moira Junge: That’s right.
Dr. David Cunnington: There’s some research showing some markers of immune system regulation is out, there are some differentchanges but actually, what triggers that is still really unknown.
So Moira, in people we see with fatigue syndromes. What are some of the things that strike you?
Dr. Moira Junge: What strikes me is that it’s awful, as you said, very debilitating. And I think there are a lot of misconceptions of misunderstanding even from our side of the fence, even the health professionals. There is still stigma that is it really real? That’s an unfortunate sort of underbelly if you like of this. People do feel like that they’re not getting sympathy or empathy or support often.
But I think there’s a bit of a paradox too that these people who – they’re very sleepy or they’re very tired. I’m surprised that they’re actually not sleeping well. There’s a lot of insomnia amongst – the guy that sometimes got a lot of time on their hands because of things are being so debilitating. They might not be working.
And so many ways, they’re really associated often with a lot of low mood and feeling pretty desperate, feeling quite isolated, a lot of financial problems associated with it too. So yeah, there’s a paradox in that often on treating insomnia and some of this chronic fatigue that people think, “Oh, don’t they just sleep all the time.” And we say, “No, not necessarily.” Actually, their sleep is often quite poor and it’s hard to sleep.
And people who – it’s like this is almost a senior being over tired, almost too tired to sleep, to sleep well. There’s a hyper arousal associated. I think we see with the exhaustion and the difficulty of how difficult life has become.
Dr. David Cunnington: Nice summary because they are all the things I really struggle with in trying to manage people with fatigue syndromes because it’s not like straight out insomnia. It’s not like, “I can’t sleep.” OK. We will use sleep restriction. We will use sleep debt to just pull it all together because if someone is already fatigued and exhausted, he can’t build that …
Dr. Moira Junge: Feel nervous about that, yeah.
Dr. David Cunnington: Yeah, exactly. It’s really hard to build up that sleep debt so we do need to take a different approach. So to get some perspective on what is chronic fatigue and a treatment approach, we have the chance to talk to Nathan Butler. Nathan is an exercise physiologist and the founder of Active Health Clinic, the clinic providing services including exercise physiology and treatments such as pacing and graded exercise therapy for people with chronic fatigue syndrome, orthostatic intolerance, and other conditions.
So thanks a lot for helping us out, Nathan.
Nathan Butler: Oh, it’s actually great to be here. Thanks for the invitation.
Dr. David Cunnington: No problem. So what actually is chronic fatigue syndrome?
Nathan Butler: Well, chronic fatigue syndrome is a condition that’s diagnosed by exclusion. People need to meet a range of different symptoms. So this can be physical symptoms such as physical fatigue, mental fatigue, concentration difficulties, as well as things like sore throats, tender glands, muscle aches and pains, and even bowel symptoms such as nausea, diarrhea, bloating, and even things like dizziness and sensitivity to light and smells.
Dr. David Cunnington: And is it common?
Nathan Butler: Yeah. Actually, it is really quite common. Research shows that 0.2 to 0.7% of people have CFS I think. And that actually what strikes me really significant in the number of people. So with Australia alone, between 50,000 and 172,000 people with this condition.
Dr. David Cunnington: And some of the things I find hard to tease out because as a sleep physician, I’m seeing people who are feeling fatigued or sleepy. When you’re working with people with chronic fatigue syndrome or other fatigue syndromes, how do you tease out those different symptoms that people get?
Nathan Butler: I think the first thing is actually to define the difference between fatigue and tiredness. So tiredness is something that we all experience whether it would be the end of the busy workweek or even school or having children, whereas fatigue is what I often referred to as more pathological. It’s going to catch up with you.
And so I think the best way of describing that is long haul jetlag. So it’s something that you can go, “I can get past this. I can do this.” But it really does catch up with you and you have no choice but to sleep or to rest.
It’s really important to sort of understand that. But also, a large part is the initial assessment and really making sure people don’t present with other conditions that has fatigue such as thyroid conditions, even sometimes cancer. But generally with a good practitioner behind us and referral then those things are usually excluded.
Dr. David Cunnington: And what about that physical side? If people find they’re either doing too much, they get that muscular fatigue or the need to rest.
Nathan Butler: It’s an inappropriate level of fatigue. I think it’s really important. So if you have long haul jetlag or if you haven’t slept for a considerable period of time, you may argue that you are fatigued. But it’s fatigue that has post-exertional malaise so they will do something whether it would be physical or even a mental activity and then they will have a lot of different symptoms after. So those physical aches and pains or some people describe as carrying an extra 20 kilos. Someone even mentioned it was like getting off a Velcro couch which I thought was really a nice way of looking at it.
Dr. David Cunnington: Yeah, I like that description. Because often the end of the spectrum I’m saying is the symptom you haven’t even talked about is sleepiness, and that’s often – it overlaps with tiredness and the language people use around tiredness and it overlaps with the language people use around fatigue. But much likely so for I do try to compartmentalize the sleepiness as heavy eyelids, head nods. It’s not exhaustion. It’s not, “I need to rest.” It’s, “I’m falling asleep or I really feel the need to fall asleep.” So I say that is another bucket again of symptoms.
Nathan Butler: Definitely. And it’s really unrefreshing sleep. It’s actually one of the hallmarksof the conditions that I did lay out that exactly like you said that it’s not head nods, it’s not eventually falling asleep but just something that – and it goes with you throughout the day and that extra weight.
And I think waking unrefreshed so people will get the equivalent of what they feel as a normal night sleep. So they will sleep for the normal duration however, they would not feel any better in the morning. And again, that’s a really good way of distinguishing tired and fatigue because when we are tired, if we have a good sleep, we will generally wake up feeling better. And even a lot of people feel that they’ve constantly got the flu. So if you think of the symptoms, the flu and aches and pains and just being very fatigued as well as tender glands and sore throats.
However, there is not an infectious agent going on. And they continue to have those symptoms of waking up unrefreshed.
Dr. David Cunnington: And where does ME fit in? So this term chronic fatigue syndrome that we’ve talked about but sometimes it’s referred to as ME/CFS. What’s the ME?
Nathan Butler: So ME stands for myalgic encephalomyelitis. This term was coined actually in the 1960s at the Royal Free Hospital in London where they had an outbreak of people presenting with fatigue. And what they found they actually had a swelling in their brainstem.
Now, the term itself, I think it’s not always the best use but – because it doesn’t reflect the condition of swelling in the brainstem. When we look at the diagnosis, there are actually three different diagnostic criteria. It’s actually probably four or five. But the three major ones are the Fukuda, Oxford, and Canadian criteria. They all exclude other conditions. And then there’s a range of those symptoms that I mentioned before. Mostly within the medical profession, they use the Fukuda criteria but the Canadian criteria often used within research but just a little bit detail to use in everyday practical sense.
Dr. David Cunnington: And a lot of those criteria don’t differentiate different subtypes of chronic fatigue syndrome or ME. You as a clinician working in this area, do you sort of recognize a couple of different clusters or different groups?
Nathan Butler: Hundred percent. So this made some really interesting research out of Canada looking at subgrouping them into five different groups depending on their symptoms. But the criteria don’t actually break them down. We generally see that people fall within different clusters. So we see people with fatigue. There is also orthostatic intolerance which is a blood pressure management condition as well as pain and irritable bowel syndrome. So they are really common ones but there are also a few more beyond them.
Dr. David Cunnington: How does the fatigue syndrome then overlap with some of the other conditions I’ve heard you talked about, so chronic pain or regional pain syndrome or autonomic dysregulation and orthostatic intolerance?
Nathan Butler: I often look at the Olympic rings when I see a patient that there are these concentric circles and a large overlap. So any of these conditions that you mentioned, you can have them by themselves. So sometimes we see people with what we would call a straight fatigue case. And that is predominantly the fatigue physically and mentally, unrefreshing sleep and often sore throats and tender glands.
But then often we will see people with symptoms of orthostatic intolerance as well. So those things like lightheadedness and visual disturbance as well as cold fingers and feet. And then pain is predominantly sort of muscle aches and pains and joint paints. And obviously, the bowel stuff is around bloating and diarrhea especially.
So when we see people, it’s really important to get that thorough assessment to really pull it apart and say, “Well, what is actually contributing towards it?” Because generally, we have these predisposing, precipitating, and perpetuating factors. So the predisposing could be genetic or blood pressure disorders. Sometimes it can be concurrent stresses in life, so maybe a student going through VCE. But there are also metabolic things like thyroid conditions that we exclude.
But then generally, we find that there’s a trigger, some precipitating factor. So 85% of the people we see have an infection, so quite a serious one such as glandular fever. And we know that 11% of people that get glandular fever develop a fatigue syndrome and 1% in total actually develop CFS. So there’s a real significant amount of people that it affects.
And then we see perpetuating factors. So these are the things that could be predisposing as well as just trying to keep up with life. And the people that we see are generally highly educated and really intelligent and they just want to keep going and doing things. However, the more that they do it, it creates a bit of a vicious cycle where the symptoms get worse and worse and can really end up making them quite disabled.
Dr. David Cunnington: So what treatments are used then for chronic fatigue syndrome?
Nathan Butler: It’s actually a tricky thing when we talk about treatments because we don’t know the actual cause of chronic fatigue syndrome. The word treatment is not something that we tend to use. We tend to talk about management strategies.
And with management strategies, we look to increase people’s quality of life. Now for some people, that can be getting back to a normal life and moving forward. And for others, it’s managing their illness a lot better and having more things that they quite enjoy.
So when we look at the science and evidence-based, there’s a little bit of argument around this. But generally, graded exercise therapy cognitive behavior therapy, CBT, are used to help manage this.
Within the patient world, we often find that there’s a lot of controversy with this. And that’s because graded exercise therapy is seen as if you exercise, well, you’re just lazy or deconditioned or if you do CBT then it’s a psychological condition. And this is something we try and move really far away from because we know that exercise is helpful for a lot of different chronic health populations, but it needs to be prescribed in the right way.
So often if we look at people with heart failure, so long-term heart problems. In the 1980s, we say rest in bed. And the prognosis of these people wasn’t very good that their lifespan might have been for another two to three years, whereas, once we introduced exercise in the appropriate level then that nearly doubled. But we wouldn’t get these people to run.
And I think it’s a very similar thing with people with CFS. So the core thing is post-exertional malaise. If they do too much then they get all these symptoms like they got the flu and can’t do anymore.
So finding the right level is really important that there’s a combination of other factors that we put into practice as well.
Dr. David Cunnington: And how does that look? So if someone has been told they’ve got chronic fatigue syndrome, so they come and see you at Active Health Clinic, what are they in for? What does the program look like?
Nathan Butler: So the first thing we did is greet them with a smile and believe them. I think with this particular condition, often when people are diagnosed, a lot of people say, “Oh, that’s terrible.” And I say, “Well, no. It’s actually quite good. I’ve got a label.”
And so what we do is a thorough hour and a half assessment and we look at a range of different factors. So we look at their symptoms. So definitely delve into their sleep pattern as well. We look at their blood pressures as well as what they’re capable during the day, what they found helpful, their current exercise, really trying to exclude other conditions it may present because occasionally as you’d be aware of, we see people with narcolepsy or the idiopathic hypersomnia where they present with a lot of fatigue but it’s not necessarily fatigue syndrome because they don’t have that post-exertional malaise.
So really working with people like yourself and excluding other conditions is very important. But once we have done that then we encourage people to build their temple. We need a solid foundation to move forward. So that foundation is pacing.
Now, pacing is not how you walk or move but it’s really finding the balance in your day. So trying to spread out the activities so that we don’t have that big increase in symptoms. So instead of maybe doing ten hours on one day, ten hours on the next and then feeling terrible and only being able to do four, try to do eight across those days so that things are more even.
And once we find that they’ve got that foundation then we look at exercise that doesn’t make people feel worse. And that’s really dependent on the individual. We also look at other things like the role of sleep, goals, stress and anxiety management, symptom mapping, DIMs SIMs, sensitization. There are actually quite a lot.
So the four pillars we generally say are the management of sleep, diet, exercises, and stress. And the very roof is made of DIMs SIMs.
Dr. David Cunnington: You got to tell me what it stands for.
Nathan Butler: It’s not steamed or fried. But it stands for Danger In Me and Safety In Me. So often, we know that for anybody that if we have a lot of safety signals around this then we feel less pain. I know that if I’m playing with my kids and I stub my toe, it hurts a bit but I shake it off and I keep going because I’m laughing. There are lots of safety messages around me. Whereas, if I’m going to the toilet in the middle of the night and I stub my toe, it hurts but it tends to hurt more. And that’s because there’s more DIMs around me. It’s dark and I really need to get to the toilet because I don’t want to embarrass myself.
We look at that as an in-product to help really try and settle down the nervous system because we strongly believe that CFS is a physiological disorder, not a psychological disorder or conditioning.
Dr. David Cunnington: And roughly, how long would that sort of program run for?
Nathan Butler: So the program runs over 6 to 12 months. I think that we often compare this to someone who had an ACL on their knee that you’re not going to heal straight away and we need to provide the body space to heal. So generally, we see people for about 4 weeks, usually an hour consult so then a quite detailed. Then we move into fortnightly to get through the major topics and then we start spreading it out further and further to the point where they don’t need us.
Because it’s really about if you can take someone to fish then you don’t need to keep giving it to them.
Dr. David Cunnington: Yeah, absolutely. And I like that approach of trying to give people the educational background, some personal experience, and the opportunity to experiment and see what works for them and what doesn’t work and then come back and get some tweaking based on that. But in the end, they’re going to have to manage the symptoms themselves.
What other stuff that you do that might lend itself to other group work or online work? Are you moving in that type of direction?
Nathan Butler: Yeah, a hundred percent. Over the decade we’ve been running, it sounds quite scary to say a decade, I’m feeling quite old. But we’ve moved from – we still deliver a lot of individual programs because the conditions can be quite complex. We delivered mainly with individual sessions. But we also have now started to tailor programs or group programs, so small groups around 8 to 12 people. We have individual session spaced within this as well because we definitely found that the most effective.
So we target specifically CFS and those with orthostatic intolerance as well as pain. I’m also running some individual online programs. So we use Zoom and Skype to go all around Australia. We’ve been in the UK, New Zealand, and Israel. So that’s quite exciting.
And we’ve also started an online group program as well that we run through Facebook because I think it’s great that we can see each other’s faces and engage. And we find out a really good way of reaching people in remote communities as well as those that have trouble actually getting to the clinic as well.
Dr. David Cunnington: And you talked about sleep and these are subset of patients of yours that you say, “Right, come and see me.” They sort of have the sleep problems. How do you pick that subset? Who do you send me and who don’t you send me?
Nathan Butler: So when we look at people sleep – I mean we are fortunate to have the privilege of working with you and looking and breaking down in sleeping to, it’s different parts. And as you would know looking at someone’s sleep rhythm or whether there’s a wake drive problem and it’s like having 20 cups of coffee and not being able to get to sleep or whether there would be more of the sleep drive that they – the body needs to sleep a lot.
So I think that trying to pull that apart and then say, “Well, if it’s a rhythm, let’s try and work on that.” But we find that if there’s something a bit more of what I would call pathological such as maybe obstructive sleep apnea or a central sleep disorder like narcolepsy or idiopathic hypersomnia where there’s just a lot of sleep then we know that they’re not going to get the care that they really need. And those specific conditions need to be addressed so that the body can have space to heal.
Dr. David Cunnington: Yeah, I agree. And from a symptom point of view for me, the sort of people I might see that then I’ll recommend come and see you are ones who are describing more fatigue, post-exertional malaise but they’ve been sent to me as a sleep physician because the language they originally used was more about sleep or sleepiness.
Whereas for me, if I’m thinking of it as a primary disorder, yeah, much more thinking about that head nods, sleepiness, no post-exertional malaise. And so the sort of person who says, “Yeah, I can still run. I go for a run. That doesn’t take it out from me. But I’m sitting in my desk and I’m falling asleep all the time.” I mean that’s a central problem of sleepiness, much more so than a fatigue type of syndrome.
Nathan Butler: A hundred percent. And I think another group as well as the people that maybe predisposed towards the obstructive sleep apnea so they might be a bit overweight or complained of a lot of snoring and even sort of waking as being quite breathless throughout the night. I think in those cases, it’s very important to rule out and obstructive sleep apnea because that can sometimes be, if it’s undiagnosed for a period of time, something that can actually lead to chronic fatigue syndrome with another trigger like a virus.
Dr. David Cunnington: Yeah. And I like your point too about the circadian rhythm thing. And a lot of the work that you guys do, getting people moving within their limits, getting them a bit more engaged with the environmental cues that cue in the body clock can go a long way to addressing some of the biology around circadian rhythm as we see with fatigue syndromes.
So I think with fatigue syndromes, they have a flatter circadian amplitude or a flatter melatonin profile. And the environmental cues that can enhance that movement being upright after a lot of exposure or blue light exposure, meals, and often someone who is feeling unwell just actually gets withdrawn from all those environmental stimuli.
So an activity program that’s getting them back into moving, which is what you guys do, is actually the right thing for getting the circadian rhythm back on track.
Nathan Butler: Definitely. And I think this is where as practitioners, we really need to work as a team. It’s not going to be one person that can help these individuals. We need to make sure that they’ve got a great support network around them, which it could be sleep physician and GP is very important. And depending on the person’s needs, it could be an exercise physiologist like myself or a psychologist that we have on our team or even a dietician.
Dr. David Cunnington: The other subgroup where I think I can help with some of the fatigue syndrome, it’s because it’s so hard to tease out what’s fatigue, what’s non-restorative sleep that it’s a function of the fatigue. This is what is actually a sleep disorder? People can actually start to get quite anxious about sleep and I can really in some respect, over focus on sleep and see sleep as the antidote. If only I was sleeping perfectly, that would be the thing that would get me past my fatigue and help me to move forward. And that’s just the perfect ingredients to get overanxious about sleep, which is then just a pathway to a vicious cycle of sleeping worse and worse.
So I’m trying to at least identify is sleep OK? And if it’s OK, let’s take the focus off sleep because sleep might be working well enough. And that’s sometimes the language I’ll use. We might go through the process of doing a sleep study to look physiologically at what’s happening during sleep but if it turns out sleep looks OK, I’ll say, “You know what? Sleep is not perfect but it’s good enough.” It’s not the thing holding you back.
So try not to get too focused or too obsessional about the sleep, which is a tricky balance if you’re feeling tired and feeling like sleeping a lot and you’re waking up feeling tired. But that’s sometimes where I’m trying to redirect people into, look at what you’re doing during the day because the pathway to getting better is more about how you’re managing things through the day rather than what you’re doing with sleep.
Nathan Butler: And I think along the journey with CFS that actually excluding things is really important because I think it gives people permission like you’re saying, to be out and ready to go. I often find within clinic even telling people, “You’re not actually doing anything wrong with your sleep. It’s just not going to be refreshing for the time.” And that’s related to your nervous system being heightened and high alert so you’re not getting that for sleep.
And that knowledge in itself can actually go quite a long way to taking that sleep sort of anxiety or worry about sleep because generally, you finally ask a person that’s having trouble with their sleep or is not refreshing what they do, their sleep hygiene is amazing.
Dr. David Cunnington: Absolutely. I agree with you. And it’s almost like it’s too good. And once you start to get too good, yay! You can now really focus on it. And then again, it can sometimes be a negative thing.
Nathan Butler: Yeah, and that comes back to moving away from rules to guidelines. There are many ways that we can get to sleep and it’s not going to be same way every time.
Dr. David Cunnington: So that was a great to hear from Nathan. Moira I’m interested, when you’re working with someone who has got chronic fatigue or a fatigue syndrome, and so presenting with difficulty sleeping and feeling tired and fatigued, how do you change your approach compared to what you might normally do with someone with insomnia for example?
Dr. Moira Junge: Yeah, it’s a very good question. I think often, we try – a lot of the rules or regulations or just treatments and techniques around insomnia and other sleep problems are quite behavioral and quite strict and it’s really important to be – really empower people by this strict routine and do this at this time and get up. And it mostly works so it’s good thing with sleep restriction and sleep consolidation and all those sorts of things.
The most controlled in this group if people often – I would always try. I would always try to decide to be going along those principles because that’s where the evidence-based is, et cetera for sleep.
However, I do find quite commonly that I just have to pull back a bit and let’s not talk that much around improving your sleep. We just need a humanistic approach and a lot of support, a lot of empathy, sympathy. Just validating that, “Yeah, this is rotten.” Sometimes just listening and supporting them, which of course doesn’t necessarily – you don’t want that to be the structure helping them manager all the people’s expectations and having conversations around that. And yeah, maybe just hearing them, just listening. It’s a very different approach to a lot of the other people I see.
Dr. David Cunnington: So I you are looking for more information on fatigue syndrome and approaches the Active Health Clinic website has got some great resources. Emerge Australia have also got lots of great information about research and where people can go to get more information about the fatigue syndromes.
So Nathan, we will take the benefit of having you available and your great clinical experience. So what’s a good tip for clinicians working with people with fatigue?
Nathan Butler: I think the first thing is belief. These conditions are not psychological. They are very real and physiological. So nobody goes out saying, “When I get older, I want to have fatigue. I want to have pain.” We want to be policemen or hairdressers or something else. So I think that initial belief is very important.
And then to look at things in a holistic way, so not just look for say, the symptoms but where would these symptoms be coming from? What’s predisposing? What’s perpetuating? So sort of really from a bio, psycho, social approach.
Dr. Moira Junge: So it’s the pick of the month. What’s your pick of the month today?
Dr. David Cunnington: So my pick of the month is a podcast. Part of the health report on ABC Radio National. And it was Ian Hickie talking on some of the proposed Medicare changes around psychology.
Dr. Moira Junge: Yeah, it’s a big topic at the moment.
Dr. David Cunnington: It is a big topic at the moment and maybe a critic listening to the interview would say, “Well, he is really putting boots into psychologists.” But in actual fact, if you listen to the interview, he puts the boots into psychiatrists just as much.
Dr. Moira Junge: The whole health system really.
Dr. David Cunnington: The whole health system. And so, a great interview. And I would really encourage people to listen to it. It’s about – goes for about 10, 15 minutes. But the reason it’s good to listen to for me as a clinician is what I struggled with in practice, is there are good mental health services for people that are very unwell and need hospitalization and there good mental health services for people that are sort of mildly unwell but financially able to provide for themselves and future services. But for people in between, which is actually the bulk of people with mental health problems, they have very poor services. And often services that are one of fit either the severe patients or the milder patients, people in the middle trying to access those services but it’s actually not the right treatment.
So I think he was actually pretty wise in the way he was discussing how the current system just doesn’t serve those people well and it isn’t designed well to provide great quality evidence-based care for that group.
Dr. Moira Junge: Yeah. And probably more – I haven’t listened to it yet, I will though, more on coordinated care to think like the team-based approach is what they were advocating for that big time.
Dr. David Cunnington: Sounds like you heard it.
That’s absolutely what he was saying is that in that middle group where people have got significant mental health issues that are severely impacting on them that they need a team-based approach. That’s what the real issue.
Dr. Moira Junge: Yeah, because that’s what we need in sleep.
Dr. David Cunnington: Exactly. Whereas a brief, single therapist, non-expert intervention is not going to cut it in that group but that’s what’s widely available. I think one of his criticisms was the proposal moving forward was just greater availability of that style of care in mental health.
His argument was, “Actually, that’s not value for money.” What about for you, Moira?
Dr. Moira Junge: Well, I selected an article that came out in The Lancet Psychiatry early this year, January, February 2019 looking at insomnia disorder subtypes. I thought, “Wow! That is fantastic!” Because I’m very, very interested in the personality profile of particular – of people who have insomnia.
And I mean we’ve got some various – some existing research on that. And it’s usually, they are very high in empathy, very high in neuroticism which sounds like a dreadful word really but they worry a lot. And everyone says, “Yeah, I’m a worrier. At the best of times, I’m a worrier, not a warrior.” But they are warriors too. They are tough. Good people, such a pleasure to work with, people that care, that care about things. And so that keeps them awake at night.
So anyway, this group in the Netherlands had a massive cohort of over 4,000 people. And then they had these five different subtypes for insomnia. So they identified five distinct what they called novel insomnia disorder subtypes, which we haven’t had this before in a literature. This is new. And things haven’t changed. So if you thought, we don’t have this in our classification system but we probably should.
The subtypes, they identify highly to stress, moderately distressed but reward-sensitive. That is with intact responses to pleasurable emotions. Moderately distressed and rewarding, sensitive. Slightly distressed with high reactivity, brackets to – lead to their environment and life events. And the final sort of subtype was slightly distressed with low reactivity.
Why I like this and I encourage people to have a read of this article is that it just will get the ball rolling. I think we need to do more discussions and thinking around that not all insomnia is exactly the same. There are a lot of individual differences within how people experience insomnia, and not just – we just talk about it traditionally as start of the sleep. Sleep onset, insomnia, or maintenance of sleep insomnia. There is so much more to it and I love this article.
Dr. David Cunnington: Yeah. And it gets to the – it’s a way of categorizing it based on traits, sort of personality traits and personal characteristics.
Dr. Moira Junge: And reaction. It’s just how you see things, how you interpret the world. And I think that’s really useful. It think it’s going to …
Dr. David Cunnington: Because if they’re mapped a bit better to, “OK. Well, how might I approach treatment? Whereas sleep onset versus sleep nightmares, it’s completely world-specific in terms of the category.
Dr. Moira Junge: It is. And the treatment is the same, isn’t it? It’s really – I mean at the moment, we sort of respond a little into the same. But there will be differences with different people.
Dr. David Cunnington: Absolutely.
Dr. Moira Junge: And that’s the sum – that’s what I’ve love to …
Dr. David Cunnington: We have the gist of that from our own clinical experience. But there are some people where you think are standard so they take our package like, “Great!” and others where you go, “I’m going to have to pull out some components or I’m going to have to pull something out in the toolbox …
Dr. Moira Junge: Yes, complicated.
Dr. David Cunnington: … to do that, which tells us it’s not all the same.
Dr. Moira Junge: Yeah, it’s not all the same. But it’s hard to know how to deal with that and so more articles like this will help us to be more nuance in our approach because we have this understanding that people are different. And if it’s coming from the evidence, the good quality research then we would feel comfortable with that. The population will have a better outcome.
Dr. David Cunnington: Absolutely. And it’s a nice framework for both clinical practice but also a future research as well.
So Nathan, what’s your pick?
Nathan Butler: My pick is actually social media and supportive networks. I’m quite old and I have never really embraced the social media side of things. But more recently, I’ve really found it’s such a positive area to build a community as well as professionally and for the patient as well.
Because of the negativity out there, we’ve recently looked at starting an Active Health Clinic Wellness Tribe. And this is about sort of positiveness in creating a community, with a good mix of sort of support as well as expertise. So I think that my tip is to be involved with it and make sure that it’s a win-win so that you’re taking something from it but you’re also giving something to it as well.
Dr. David Cunnington: Right. And I’ll put a link to that in the show notes.
So look out for upcoming episodes. We are developing episode on a range of topics. I’m still struggling with how we are going to talk about food and sleep and what’s evidence and not evidence but look out for that. They will be coming up.
Dr. Moira Junge: Yes, that’s a good one. We need to do that one.
Dr. David Cunnington: So thanks a lot for listening to the podcast. And if you got any suggestions for other episodes, send us an email at Podcast@SleepHub.com.au. And if you like the podcast, review us on iTunes. Spotify now has podcasts so you’ll find us on Spotify as well.