RECORDED Fri 16 Aug 2024
SUMMARY KEYWORDS: school, ME/CFS, people, Ethan, condition, teachers, Shelley, students, illness, children, Shelley, years, life, happened, diagnosis, learn, kids, experience, diagnosed, call
SPEAKERS: Shelley-Lee Waller, Megan Gilmour
Megan Gilmour 00:00
This episode is proudly brought to you by the TPG telecom foundation dedicated to creating opportunities to improve the health, wellbeing and education of Australian communities in need. Hi, I’m Megan Gilmour, MissingSchool, Co-Founder and CEO, and this is Live & Learn. This is the podcast that unearths insights at the intersection of health and education, building a powerful alliance to keep kids with complex health conditions connected to school from anywhere. The podcast is recorded on Ngunnawal land, and we acknowledge and pay respect to the traditional owners of this land and the land on which you’re listening.
Megan Gilmour 00:47
Welcome to our weekly webcast, a place to zero in on the interplay between health and education and to amplify the voices of those supporting school students to navigate their educational journeys despite complex health challenges.
And today’s guest is Shelley-Lee Waller. Shelley-Lee is a former journalist who now works in the health promotion field. Shelley speaks today in her personal capacity as an advocate for young people with long-term chronic illness and disability, and their families.
Shelley helped set up a support group for carers of young people with myalgic encephalomyelitis, chronic fatigue syndrome in Australia around seven years ago, and continues to oversee this.
The group is made up of over 400 families whose young children and teens have developed the debilitating neuro immune condition, ME/CFS.
Shelley’s personal connection is through her son Ethan, now 22, who first developed this condition a decade ago. Welcome Shelley. We’re so excited to have you on live and learn.
Shelley-Lee Waller 1:55
Thanks, Megan. It’s great to have the opportunity to talk about something that’s so close to our heart.
Megan Gilmour 2:01
Indeed, and so today, as we’re here to talk about supporting school connections for these students, including Ethan, who’ve experienced complex attendance and medical or mental health conditions. We’ll get started by asking, will you tell us about your journey with ME/CFS and how it impacts you and why it’s something that every Australian needs to know and care about.
Shelley-Lee Waller 02:29
Thanks. Yes, I guess we started on this journey in the same way that most people do, which is completely in the dark about chronic illness, let alone this particular one. And for us, we had two children that were very happy and healthy. My eldest was around 12 when he developed glandular fever, and he just didn’t seem to get better from it. So, he was quite impacted, in the sense that, you know, he couldn’t get out of bed, when he would stand up, he would faint. And he also was just catching lots of other respiratory illnesses, and just didn’t seem to recover.
Thus began a very long journey for us. Diagnosis took quite some time, and there was a lot of adjustment for us to even understand or even accept that he had a condition that may not go away. Let alone for everyone else, right? So it was, it was difficult even for us. When he wasn’t well enough to go to school, we were like, well, if you’re not running a temperature, and then we’re pushing him back to school, doing these things that parents do to try and make sure we don’t end up with other problems, and not recognising just how severely ill he was.
Megan Gilmour 03:54
Well, we’ll get into that a little bit more, because you and I have known each other for a while, and I know there’s so much that you can share on this to help people understand. So, Shelley, people probably assume things about ME/CFS. What’s the million-dollar question asked by carers like yourself when their child experiences ME/CFS?
Shelley-Lee Waller 04:18
So, the first question we usually get is, what is that, you know, that they haven’t heard of it, and it is a condition that’s actually quite prevalent. It’s considered to be one of the longest causes of school absence of all the chronic illnesses there is. And there are up to seven times as many people with ME as there are MS.
Megan Gilmour 04:47
Extraordinary.
Shelley-Lee Waller 04:48
Yes, it’s a condition that you will run into, or you will find someone that has this condition, but they may not be diagnosed, or they may not tell you the name of the condition. And one of the reasons is that there’s been a very long-standing misunderstanding about the roots of the condition.
Many decades ago, it was considered that, you know, it had a lot of a psychological basis to it, but since that time, there have been thousands of research papers showing exactly that it is a biomedical illness. It’s not something you can just push through and think your way out of, and it can be a really debilitating illness for 25% of people who get this illness, they are either bed bound, or house bound and are unable to leave their house.
Megan Gilmour 05:36
Yes, it’s so important for people to hear this, and I know we’ll hear a bit more from you about the reasons for that and some of the things that have come up in your own experience and Ethan’s experience, and, of course, your work. So, what’s the most important thing you want people to know, given that these assumptions are made, or people may not be aware, what’s the most important thing that you want them to know.
Shelley-Lee Waller 06:04
I think it’s probably good for people to understand that the main symptoms some people think, oh, it’s just being tired. But actually, the cardinal symptom of this condition – it’s like having a battery that only charges to 10%. So if you’ve got a phone and it’s working in that first 10% you think, Oh, this phone’s working. There’s nothing wrong with it. But once it’s out of charge, that’s it. And it’s very similar for people with ME.
It’s a very unpredictable illness. It affects their brain, their immune system, their digestive system, their ability to make energy and very small exertions. For some it might be a phone call for another person, it might be standing up long enough to have a shower, that they can essentially crash for extended periods, some for weeks, and some people, if they overexert themselves, can be bed bound and affected for months. So, it’s really hard to describe.
Megan Gilmour 07:12
Using this battery example, I haven’t heard that before, and that makes so much sense to me, based on what I know about, or what you’ve shared with me before, yes, knowing all you know, what’s your biggest hope for kids navigating ME/CFS.
Shelley-Lee Waller 07:33
It’s, it’s mainly for me, I mean, our biggest hope is, obviously, that medical research finds a cure, but short of that, our hope is that there is more understanding from the medical community, but also about from, you know, friends and family, people that are in the they’re in the position to actually support people with a chronic illness.
And we find that if it’s an if it’s a known condition, you know, cancer or kidney or something, that people fully understand that they can tend to be more, ‘Oh, I understand how this works’, and therefore more supportive, whereas people that feel less certain about what the condition is might withdraw because they’re not, not sure how to help.
Or in other cases, sadly, blame the victim and say, oh, you know he’s just unfit, or you should be disciplining him more and making him go to school and he’d all just get over it, as if, we hadn’t tried all those.
Megan Gilmour 08:41
Yes, yes. And there’s some things that that we could dig into when we get to school about that, because your experience and our experience, there are some things going on in our current educational context, I think that are relevant to this at the moment, yes,
Shelley-Lee Waller 09:01
Yes.
Megan Gilmour 09:02
So that’s, I mean, for such a – as you’ve explained – quite a common, you know, set of conditions. There seem to be some, some frustrating misconceptions there as well. You’ve covered some of them. So, my next question was, actually, what are some of the common and perhaps frustrating misconceptions about ME/CFS, and how does that impact Ethan, and you as a parent, as a family?
Shelley-Lee Waller 09:33
I think that the main misconception about it is that I guess everybody gets tired, has trouble with sleep, and they don’t seem to understand that it’s a level of exhaustion that can’t be pushed through, and that pushing through reduces your ability in the future.
So, the more you it’s, you know, sufferers have said it’s like quicksand – the more you should struggle against it, and the harder you work to try to keep doing more, the sicker you become. And that is exactly what happened with our son, who, he wanted all his mates, were playing soccer, and that’s all he wanted to be doing. They were going out to parties. They were getting to go to school.
And he just wanted to be normal, like everyone else, and he pushed and pushed. He would go to school with not having not slept at all, he would do everything he could to just make it go away. But it is, unfortunately, not a condition that goes away. And there are some similarities with people that develop long COVID. Around about 50% of those end up being diagnosed with myalgic encephalomyelitis.
Megan Gilmour 10:50
Interesting
Shelley-Lee Waller 10:51
Much similarity but different pathways into the illness
Megan Gilmour 10:56
But the outcomes present similarly in terms of life,
Shelley-Lee Waller 11:00
Yes
Megan Gilmour 11:01
And that must be, you know, that adds a weight to the physical experience of the – do we call it an illness, a disease, a condition, what’s the language here? Shelley, Help me out. How is it referred to in medical terms?
Shelley-Lee Waller 11:28
So, ME, yes, so, so the original term was, always, was myalgic encephalitis, aside from historically, there were some other names that were given for it as well. But then it was, the difficulty that happened was that in the 1980s it was, there was an outbreak in the US, and some people came in and renamed it chronic fatigue syndrome, and it’s talking about fatigue as being sort of the only, it makes it sound as though that’s the only symptom, but that’s highly misleading, because, you know, it affects your cognitive capacities.
I had a child who was in a gifted range, and who was accelerated in his classes, who couldn’t get to school, couldn’t think, couldn’t move, couldn’t some days, couldn’t talk, you know, just whisper, couldn’t be touched because of sensitivity to light and sound. He’s doing a lot better now, but it’s a very unpredictable illness.
Megan Gilmour 12:35
Yes, in my asking, it’s, I suppose the hint is there is in the syndrome component of that name. People’s experiences often lead them in groups, supporting them to use terminology that’s more acceptable to them. So, I guess that’s where what I was getting at. Is it called an illness? Is it called a disease or a condition? And then I turned to the fact that that S on the end of it – Syndrome.
Shelley-Lee Waller 13:03
Yes, so the actual condition is – the World Health Organisation has recognised it as a neurological disorder since 1960 so yes, it’s a disease, yes,
Megan Gilmour 13:16
Yes, okay, and that’s really useful to know. You’ve talked to me about this before, and I feel like it’s an important one to pick up here is that there’s been a lot of disagreement, or just a diversity of views, might be the best way to say it around what this – it’s hard to diagnose – we’ll get to that in a minute. But that’s surely led to some of the misconceptions, where people say, ‘Okay, you just need to, get up, be resilient, push harder’, and you’ve shared with me before that that has actually taken kids and people back backwards in terms of their recovery or ability to do things. And I think this is a really important one, just to plant here before we talk about the school component.
Shelley-Lee Waller 14:17
Yes, well, because one definitely leads on to the other. The ability to get the support that you need from the school is based on you, or predicated on the fact of you having the right access to the right specialists who can diagnose and treat you.
And unfortunately, because of the lack of research into the illness over such a long period of time, many of the GPs who are currently working in the industry, were not trained in either diagnosing or understanding it, because at that time that they were studying it was, it was a very loose definition. Now we have a very specific set of clinical criteria in which to diagnose it as actually, really quite clear when you have those diagnostic criteria to meet, and it’s specific.
Megan Gilmour 15:08
Okay, and so is there still a risk of delayed diagnosis, even though this progress has been made?
Shelley-Lee Waller 15:16
Yes, definitely. And that’s just a matter of lag. So, the, we have National Health and Medical Research guidelines, and they were written 22 plus years ago. Some five years ago, it was recognised that those guidelines were completely out of date, that they needed to be upgraded and completely rewritten, as has been done in most other major countries. And we’ve only just had notification recently that those guidelines will be rewritten and that will be associated with a complete communication and education package for GPs.
There are some fantastic, fantastic cardiologists, rheumatologists and immunologists out there that actually specialise in this, but if you, if you can’t afford to pay privately, or if your GP is not referring you to the right people, then you won’t get that diagnosis, or the proper management that can keep it from becoming really severe.
Megan Gilmour 16:19
Yes, and if we go back to what was we were talking about a little while ago, is where it’s just a push through, and you don’t have a diagnosis, and then you know, the person experiencing this is, well, firstly not being believed, and then being pushed to do things that are making them, that makes them more unwell. And for kids, especially who don’t have all that much power, relative to adults, in terms of them just trying to actually communicate what’s happening for them. I imagine that’s also really, really tricky.
Shelley-Lee Waller 16:54
Yes, you can imagine it’s a time when you’re forming a sense of identity, of who you are, developing your own independence, and suddenly you’re speaking, and no one’s understanding what you’re saying or believing you and teachers have a really big role to play in being able to validate their experience and support them through school, as we were lucky enough to yes experience with our son.
Megan Gilmour 17:23
Yes, indeed. And before we move on to school. How many Australian children and youth are living with ME/CFS right now? That’s the golden question.
Shelley-Lee Waller 17:35
Yes, and I’m raising my eyebrows because it’s not – the data is not well recorded. We have to work with estimates that have been done from research. The Department of Health tells us that there are around 250,000 Australians with ME CFS, although that number has significantly grown by the number of people developing long COVID, and then actually being diagnosed with ME as well.
So that number is almost certainly a massive underestimate. They suspect that around 90% of cases are either not diagnosed or misdiagnosed. So, it’s a large amount. And for those children, the estimate, there’s a quite a peak in teenage years. Some young people do develop ME, but it generally has a higher peak, or obvious incidence in puberty years, so 13 to 18 is quite a large peak, right during their high school crucial years, of course. So, there’s an estimate of around about 40,000 children and teenagers.
Megan Gilmour 18:49
In Australia today?
Shelley-Lee Waller 18:50
Yes
Megan Gilmour 18:51
So around 40,000 and that would be an underestimate
Shelley-Lee Waller 18:55
Absolutely
Megan Gilmour 18:56
and then we have this additional increased rate due to long COVID.
Shelley-Lee Waller 19:03
Which is cumulative
Megan Gilmour 19:04
Yes, of course, this is the other factor, isn’t it.
Shelley-Lee Waller 19:05
Yes
Megan Gilmour 19:06
What sort of increase in the number has been caused by that long COVID situation?
Shelley-Lee Waller 19:18
Well, it’s, it’s not being, at this point in time, tracked or coded. So, so that, again, we’re really just working on estimates and applying what research has found in other countries. There has been some, you know, the research that has been done here is that it’s an illness that costs this country in direct health care costs and lost wages, between $10 and $14 billion a year
Megan Gilmour 19:50
Yes, yes, right,
Shelley-Lee Waller 19:51
So, we are talking about a significant economic impact.
Megan Gilmour 19:56
Absolutely, yes.
Shelley-Lee Waller 19:59
And that’s, you know, your question earlier about why all Australians should know about it is that you won’t go through life without finding someone who’s impacted or living with it.
Megan Gilmour 20:11
Yes, yes, and that’s why we’re so pleased to be able to put a spotlight on it today through our conversation, just because, I suppose, even before diagnosis, if for example, you know, teachers are observing that a student who was lively and active and engaged becomes lethargic, tired, can’t focus. You know, maybe it can be –
Shelley-Lee Waller 20:43
Yes, and irritable, it can be being irritable as well, because it’s an element of this orthostatic intolerance. So, the longer that they’re upright across the day, the higher their heart rate goes, and the less blood to the brain they can become, they can present as a behavioral problem,
Megan Gilmour 20:58
Cognitive issues
Shelley-Lee Waller 20:59
Yes, suddenly they can’t think. And the teachers know that they’re bright students. They know they can do it, and suddenly they can’t, so they think, well, is it a can’t or a won’t?
Megan Gilmour 21:10
Yes. And we’ll, yes, we’ll just keep encouraging you to sort of get on with it again. It’s just not going to work. Yes? So, on the back of that, are there any other kinds of complications that kids with ME/CFS face?
Shelley-Lee Waller 21:27
Yes, absolutely. This is part of a very complex condition that often leads to other conditions, or runs alongside other autoimmune kinds of conditions. Usually, they develop a thing called Mast Cell Activation Disorder, which is an increase in sensitivities to food and chemicals. For some people, they also have other undiagnosed autoimmune conditions going on in the background. There can be a higher prevalence of children with ADHD that have ME, but yes, a lot of these clusters occur, and it makes it very difficult to unscramble the egg.
And then, of course, like any chronic illness, if you are unwell, feeling miserable for extended periods of time, getting more and more socially isolated because you’re just too unwell to go and socialise, play sport anymore, that then leads to a lot of mental health issues, anxiety and depression.
You can have long periods away from school, and then you come back, and people are like, ‘Oh, where have you been? What have you been doing?’ You know, and there’s a tendency for them not to understand. It does make those kids feel really different and left out.
Megan Gilmour 22:52
Yes, and you mentioned there anxiety and depression, there’s obviously the social aspect that you’ve identified there, which is a really important one. And then there’s just the coping with the illness, or the lack of diagnosis, or and where there’s a lack of diagnosis, not being believed. Long periods of time with just not knowing what’s going on, or then, indeed, if there and when there is a diagnosis, the grief associated with that.
And you flagged this at the beginning – coming to terms with the fact that this might be a lifelong thing and will have lifelong implications as well. So, I think it’s fair to say that, well, I would be surprised, most people would probably be surprised, if there weren’t mental health issues associated with this condition.
Shelley-Lee Waller 23:45
Yes, because it’s certainly – the one way that that you can distinguish between a primary depression and ME is you ask them, if you could, what would you do? And a child with ME as ours was asked, you know, oh, I’m going to be a concert pianist. I’m going to play soccer for Tottenham Hotspurs, I’m going to do this when I get better, I’m going to do all of these things.
He wanted so much. He had so many dreams. And, yes, as you say, it’s a really difficult process. And unless children, and teenagers, obviously, are supported through this process, their chances of just falling off, away from their friends and education, their whole community, it’s such a risk for them, for the whole trajectory of their lives.
Megan Gilmour 24:40
Yes
Shelley-Lee Waller 24:41
It’s just such a crucial time for them, and that’s why we really relied on our teachers and our school to have a safe space for him. We were so lucky in so many ways. And on the days that Ethan was able to present to school, his principal would come out and say, ‘Oh, seeing you has made my week’, you know, he was always made to feel welcome –
Megan Gilmour 25:12
Valued
Shelley-Lee Waller 25:13
Yes, and valued, that’s right, regardless of what was going on in his life, they were pleased to see him at school, as pleased as he was to actually be there!
Megan Gilmour 25:21
Yes, for sure. And I just think back on your earlier comment about this sort of increase in, well, the condition – not necessarily increase in diagnosis – so – grappling also with all of the hormones of the teenage years, as you know, or adolescents as well, at the same time as everything else that’s going on. So yes, it’s, it’s quite a lot for a young person to deal with, and sort of navigate through.
Shelley-Lee Waller 26:01
Yes
Megan Gilmour 26:03
So, speaking of young people, let’s, let’s turn to siblings and peers. But start with siblings. What have you observed in your experience?
Shelley-Lee Waller 26:14
It definitely – anyone, I guess, that experiences the onset of a chronic illness or disability in their family, there’s a whole change in the dynamics. For Ethan, he was the eldest child, and his younger sister suddenly changed her role to be more of a carer, and she had a great sense of responsibility about having to look out for him. But she also had a really difficult time with the sense of guilt about it, you know, she said to me, oh, it should have happened to me and not to him, because I’m less sporty and active. It wouldn’t have mattered as much to me. And things like this, which is totally not true – it would have mattered to anyone, but, but that was just her expressing that sense of, I don’t want to get on with my life and just leave him behind. And she would always be – yes, she still does – she’s always looking out for him.
Megan Gilmour 27:16
Yes. I feel emotional when you say that
Shelley-Lee Waller 27:20
There was a bonding there. I guess, that he’d be home, she’d come home from school and tell him everything that had happened. And, whereas if he was just off out partying and doing things, as an older sibling would, there are other things. They’re very close.
Megan Gilmour 27:37
Yes indeed. And to hear that siblings feel guilty. I know this happened in my own experience too. It hurts so much, doesn’t it? Because that’s two or more children in a family who are going through their own quite crucial experience at an age where they don’t necessarily have the skills or understanding to deal with it,
Shelley-Lee Waller 28:07
Yes
Megan Gilmour 28:08
and I feel like that, you know, that guilt of thinking it should have happened to them and therefore probably not being able to fully live in their own lives and dealing as well with the anxiety associated with their peers and their parents as well.
Shelley-Lee Waller 28:30
Yes, and missing out on, you know, that cycle of guilt that we also felt like all the attention was being given to trying to keep my son alive, lots of hospital ED visits and out at wee hours and no more holidays. We sold our camper trailer. You know, we used to camp 12 times a year, and suddenly that was all off limits. Everything changed, a thing that someone called ‘third party house bound’. You know that it’s not just the person who becomes housebound who he was in those first four or five years. But everyone else has to stop doing those things as well,
Megan Gilmour 29:15
That’s right. And or do them with one parent, but not the whole family, or with friends or on their own. Yes, everybody’s on their own journey with where they’re at. And, you know, it’s a very dynamic situation.
You mentioned Ethan’s peers earlier, how did they respond across this time and across the period that, I guess, of the school life that you observed through Ethan’s journey,
Shelley-Lee Waller 29:45
Yes. So, I guess I have to do a sliding doors moment for him, because it was initially when he was absent from school, and he wasn’t getting support, and he didn’t get access to the See-Be robot to connect him. He was losing friends. They wanted to help, but they were getting on with their lives. They were going away. They were off playing soccer, and they were off at school camp. They were doing all of those things that he couldn’t and as much as they didn’t mean to, they just were moving on with their lives.
He always had a really great and tight-knit group of friends, and he still has them. So, he still has those friends from school now, but that is entirely because of retaining that connection with his education and the accommodations he received and the access to the robot in the classroom, that meant that the kids were still thinking of him every day when he was there.
Megan Gilmour 30:52
Yes, he was there. And for people listening, MissingSchool provides telepresence robots for children who are at home or in hospital to connect to their own schools, as Shelley is sharing, and that’s what Shelley’s referring to. Ethan is a student who we supported through the robot, and we’ll get into a little bit more about what Ethan’s school did then as well, and across a really interesting time and period, as we know, through COVID and other things.
So he is, yes, they’re moving on, they’re getting on with their daily life as we would expect. And of course, at a time when it’s really – we all know that feeling if we haven’t been well, or something’s going on in our life, it’s difficult or challenging, that’s when we most need our community around us.
Shelley-Lee Waller 31:45
Yes, absolutely.
Megan Gilmour 31:47
And you know, when you’re when you’re a kid, everything’s about your friends as you’re going through those rites of passage. And the other thing, of course, is the young person, Ethan, in this case, is spending most of his time with adults, yes, not with peers.
Shelley-Lee Waller 32:08
Yes, he was literally either leaving the house to visit doctors and or have tests, and we would have to lie him down in the back of a car because sitting upright was too stressing on his body. And yes, that that was his life for a long time, it was pretty miserable.
Megan Gilmour 32:28
Yes, very, very tough. And I just want to put a word in here for kids like Ethan and other young people, children with chronic conditions or complex conditions or long-term injuries, they lose a lot in the process, and they’re fighting really, really hard. So yes, that’s why we’re so committed to making that better for them and giving them as much opportunity and possibility to be participating and staying in touch with their life.
Shelley-Lee Waller 33:08
Yes, and have a sense of purpose
Megan Gilmour 33:10
Sense of purpose and value and belonging. And I realised this recently when I was talking to team member Kirsty about, you know, we’re often talking about giving the support to people and supporting children and helping them to be included or belong, and then forgetting the other side of that, which is, it’s not just what they’re getting, it’s what they’re missing out on, giving of themselves, their contribution, you know, not being able to make their contribution in their community is also, you know, this is innately part of being human, isn’t it? To be seen, to be heard,
Shelley-Lee Waller 33:54
Being able to help someone else, to learn to play the piano, or being, yes, just that collaboration
Megan Gilmour 34:05
And to and to do that only, that thing that only we can do, which is be ourselves, no one can contribute that because, we’re an N equals one, each of us. I think that’s the point.
Shelley-Lee Waller 34:22
Yes. Exactly
Megan Gilmour 34:23
So, do kids with ME/CFS miss a lot of school?
Shelley-Lee Waller 34:27
Yes, so between grade eight and 12, Ethan kind of missed most school, really. He had a period where he was going in for mornings, and we would come and collect him at lunchtime. But then we realised that that was just making him sicker.
So, then we ended up, you know, coming up with a solution for him that involved going into school once a week. Or at best, you know, he might get in for a lesson twice a week, but usually it was around about once a week.
And the way that he was able to manage that was by reducing his academic load and by having that access, even if he didn’t have the video turned on, sometimes, just listening to the lessons and just doing home-based work. He was too sick, too often, to consider something like distance education, where there’s, you know, you still have to actually be present for the lessons.
We did have to augment a bit of Ethan’s tutoring. We had some teachers from his school that offered to do things in their own time to make it work. They – I don’t know, I honestly can’t thank the teachers enough for that compassion and for them recognising that he had this little spark that that needed to be nurtured and could be nurtured, and then grief.
And it was music. He’d always, you know, loved music, and it was really in his DNA, was in the school band and played the trumpet for each Anzac Day. And he loved his piano, that was his first instrument. When he became sick, he couldn’t sit up to play the piano anymore. So, he laid down, and we’d fiddle, with some composing and that on the computer. And it was his music teacher who recognised that he really could do something with that, and they nurtured that little spark of creativity that he had. And, and thank goodness, because we don’t know what he would have been capable of doing otherwise.
Megan Gilmour 36:51
Yes incredible. And a shout out to teachers out there who we know from our work and from what we read in the papers and other information that we’re getting, have had a really, really tough few years, and just to recognise the role that teachers play and how important they are for these kids, especially, yes, where it’s not only a lifeline to the community, but it’s also a lifeline to learning, which offers hope and the belief that things will get better and that someone believes in you. I mean, all of us have those teachers who we know, who just showed us that they believed in us, and how much of a difference that made, and I’m hearing that in your story about Ethan
Shelley-Lee Waller 37:49
Yes – yes. When Ethan eventually, he had to do his senior two years over, over a period of four years, and it was a long, hard slog. And they, there were things like putting beds in his exam room and breaking his assessments up, and there was a huge amount of support so that, excuse me, so that he could show what he was capable of. It wasn’t just the level of fatigue that he had in that moment.
And we didn’t even think he would be capable of graduating and getting an ATAR to got to university, but because we just kept him connected, and during periods when he was well enough, he would go forward and progress quickly. And then in periods where he was very unwell, we, you know, at one stage just dropped him out of school in year 11, part way through, and then started again the year after, yes, just necessary under the circumstances.
But anyway, ultimately, he was able to apply to the Conservatorium of Music to get into music production. And he said, in that, music saved my life, yes, because it was the connection. It wasn’t just really music; it was the connection. So, he would be collaborating with other teams of school students, over the over the robot in the classroom. You know, he could be heard.
Megan Gilmour 39:24
Yes. I just love this so much. It makes us so happy to, you know, and the ATAR and getting into the Conservatorium, all of that was possible because school continuity in one way or another, could happen,
Shelley-Lee Waller 39:41
and because people believed it could
Megan Gilmour 39:47
Yes, yes,
Shelley-Lee Waller 39:48
Which was a big deal. There were a lot of initially, there was some resistance. There were teachers saying, ‘Well, look, if he’s that sick, he shouldn’t be learning. He shouldn’t be here’, you know. And if that’s what he wanted, fine. But he wanted to be there and he could be. He wanted to be doing something and doing something meaningful to him.
Megan Gilmour 40:10
Yes, and just going back on what you’ve shared with us today, Shelley about how difficult a journey that Ethan has had, bed bound at times. You’ve talked about him needing to take a break in year 11 altogether. Yes, you’ve talked about getting into school once, if he could a week.
So, I’m highlighting that again here, or low lighting it. I’m not sure which! But I am highlighting it for the fact that Ethan was very unwell, but here, in this part of the conversation, where we are talking about what’s possible, and what was made possible by the school and made possible by teachers, and of course, you as a family, and all power to Ethan –
Shelley-Lee Waller 41:01
Yes absolutely
Megan Gilmour 41:02
He could still get through and do something that has meaning for him, and that’s given him a purpose, and that feels good to him. And so, you know, I just, I really want to make that point that even in the most difficult and trying circumstances, some really good things can happen where school continuity occurs.
And I recall you saying that – despite, as you’ve mentioned, some resistance, and then eventually moving into a space where the school could provide this technology – that then the school was able to say, Okay, well, we’re doing this with some borrowed technology, but we have our own technology here, like teams and zoom on a laptop, and so that was more suitable for certain lessons.
Shelley-Lee Waller 41:53
That’s right, yes.
Megan Gilmour 41:52
And so that was able to be once, once the school was able to do it. One way, the school was able to do it other ways.
Shelley-Lee Waller 42:02
That’s right. In fact, it opened up a whole new paradigm for them, really, for the teachers as well as the students. Because I had a lot of other students who would then invite him to join a party, but online, things like that. I know that seems kind of a bit standard nowadays, but back when this was happening to him, it wasn’t, and it made them far more aware that there were people out there that were dealing with these kinds of conditions, and that they were still like them. They weren’t just out there somewhere else where I couldn’t see, so that there was a nice sense of them really feeling part of it as well.
Megan Gilmour 42:52
power to Ethan t inclusion can mean so many things. You know, it’s, we call it ‘presence’. So, we talk about the technology as enabling learn from anywhere and giving the student presence. We don’t like to refer to it as remote learning or distance learning. We like to say that the technology provides presence so that the school and teachers and the school apparatus, all the other services or whatever else can operate for this person who’s coming, using a digital technology, to actually be present.
And this is why we’re working really hard to have this mainstreamed for students like Ethan, and it’s probably that moment in the conversation where, you know, we’re seeing….it’s being put around, you know, COVID lockdowns that, you know, there’s this plummeting school attendance. And yes, there’s definitely been an impact through that period and after that period. But school attendance was falling before COVID as well.
So, let’s call it an attendance crisis, and we have, we’ve seen a lot about this in our media over at least the last 18 months, and we’ve seen this as a global phenomenon. So, it’s not just happening in Australia or one state or territory or one school system. And I think about what you’ve described, and I also wonder how many students in that cohort who are presenting with complex attendance issues might also have this in the background.
Shelley-Lee Waller 44:46
Yes, yes, I really do wonder. Because, it really is a spectrum kind of disorder, and people can get, a post viral syndrome that will, clear in time, and it definitely affects their ability to concentrate and impairs their memory and their ability to learn, as we saw so significantly with Ethan and nearly everyone who develops ME, some can’t read.
I probably should say that for some people, they can’t attend, they can’t learn and, that they have no choices but to drop out of education. But, yes, just for those that are within that, that it is within their ability, and it doesn’t make them worse, then there needs to be that ability to keep them, with some plan for the future
Megan Gilmour 45:43
Indeed. And I just want to highlight here as well, something that we talk about a lot at MissingSchool, which is the way things are siloed, and so something’s a mental health, you know, we’ve got a mental health crisis, and then we’ve got chronic conditions, and then we’ve got kids with spectrum disorders. And then we have, students with disability. And what we see, what is more real in our day-to-day work and from our lived experience as well, is it’s more like a Venn diagram.
Shelley-Lee Waller 46:18
Absolutely a little column of A, a little of Column B
Megan Gilmour 46:22
Yes, so we see, you know, students who would traditionally be seen as, or known as having a disability, a physical disability, and then they may have ADHD, they may be experiencing ME/CFS. So, this is more likely to be the situation that we observe – is multiple conditions overlapping. And then we also have students experiencing, you know, there’s intersectional issues let’s say – they might live in a rural or remote area, or they might come from a low socio-economic situation or a non-English speaking background. So, there’s all these different factors that are at play that can make this more complex.
Shelley-Lee Waller 47:17
Yes, yes, you’re absolutely right. You know, like we see that in our support for children, for young people with ME. Often it will uncover something that already was preexisting. But it’s the information and the access to information that that really helps get that support from families, to be able to activate it, to be able to make a plan that works for that child.
Megan Gilmour 47:47
Yes. And, you know, the very purpose of these conversations is to bring that information to teachers just in time, and a deep dive into it, and hopefully relieve some of the pressure that carers experience in trying to explain rapidly in a meeting, or, you know, in multiple interactions, what this looks like, and what it means to the classroom.
Shelley-Lee Waller 48:15
Yes
Megan Gilmour 48:16
So, what are the critical times in a kid’s life, school, life with ME/CFS, anything there.
Shelley-Lee Waller 48:25
So, I guess it really, because ME does tend to have that really high peak period during the teen years, it usually is during high school that things, even if they’ve developed it earlier, it certainly comes to a head during that period when suddenly they have strict exam conditions and a huge amount of stress and pressure put on them, if they’re to complete senior school. Not that everyone has to do that, but it’s certainly a period of high stress and high levels of exertion and the need for presence to be able to keep up.
Megan Gilmour 49:14
Yes, and also presence for the BSSS. So, you know, students in Year 11 and 12 have to meet attendance criteria. They need to be there for a certain percentage of time to qualify for their certification, I guess.
Shelley-Lee Waller 49:35
Yes, that’s right, yes. So, it’s really just a confluence of the most difficult time of their life, with the highest level of pressures on them, not to mention their physical development and their growth, and, yes, all of those things.
Megan Gilmour 49:55
Yes. Do you see – does this emerge in primary school as well?
Shelley-Lee Waller 50:02
It does, yes. There have been very young kids that have developed this, and they don’t even realise, except that the child’s passing out. Or not able to walk, or in a lot of pain when they’re walking. But yes, we’ve got very young children that are – I’m seeing more and more of that really in the last with the COVID pandemic.
Megan Gilmour 50:32
Right, yes,
Shelley-Lee Waller 50:33
It does happen. But it definitely is a very strong peak after puberty. There is involvement in the hormones, in the hormone system, and we know that because it’s a much higher level of females who develop this, the same way as they do for autoimmune conditions.
Megan Gilmour 50:52
Higher prevalence among girls. Yes, right,
Shelley-Lee Waller 50:54
Higher prevalence among girls yes
Megan Gilmour 50:56
Right okay, I didn’t know that. I’m always learning something new from our conversations Shelley.
Shelley-Lee Waller 51:01
Yes, around about two thirds are actually female who develop this, which is very coincidentally, or not coincidentally, very similar to most autoimmune conditions. It’s known that there’s an endocrine and a hormonal impact.
Megan Gilmour 51:20
And again, the, you know, the challenges that we’ve discussed about diagnosis or late diagnosis, and the complexity of things, and students not being believed about their, you know, what’s presenting for them, health wise, or, you know, that being talked about as if they’re lazy or they’re trying to fob off school. All of these things just add to the mix. That would be the place for anxiety to be created, as well, I imagine,
Shelley-Lee Waller 51:55
Yes. Or blamed for it, particularly as you can imagine, women or young women to be, you know, who suddenly develop all these problems, and the first port of call nearly – the statistics show that nearly all, at some point in time, nearly all people who have ME/CFS, if they are female, it will be explained away as being anxiety. I know that that leads to really prolonged difficulties getting that diagnosis and that recognition.
Megan Gilmour 52:32
Yes, and increases the pressure of the illness itself. So, and this next question is, what should families and schools be prepared for at different times, you’ve covered quite a lot of things already on this, is there other guidance you can share with us Shelley?
Shelley-Lee Waller 52:54
I think probably prepare for it to be unpredictable because the condition, because of the immune element of it, it is a condition that won’t always present the same way and within the same within the same child, it can morph from being migraines and headaches and fainting, to more, kind of pain and other symptoms. And so that is, that is par for the course with ME/CFS, that it’s quite an unpredictable illness, and that does make it really difficult.
So, it’s always, it’s better for teachers to understand that if there’s because someone was capable of doing something on one day, doesn’t mean that they can do that the next day. This cardinal symptom of post exertional malaise where they can show this in testing, that they’re capable of exerting this much energy on day one, but on the day after, they can’t, they just can’t.
Megan Gilmour 53:54
Yes, and people, you’d have people saying, oh, but you were able to do this yesterday.
Shelley-Lee Waller 53:57
Yes, and it’s a big issue at school, and I can understand it from teachers saying, ‘oh, but he could do it before’? When he had sleep, when he hadn’t had, you know, been recovering from a cold, or there were other exertions, that day or the night before.
Megan Gilmour 54:16
Yes, really important to know. Shelley, we’ve covered a lot of territory. So, this next set of questions is about school life challenges, and I think we can use them to sort of do a little bit of a wrap up, a bit of a dot point.
So, the question is, with a couple of sub questions under it: What are the biggest challenges and vulnerabilities facing kids with ME/CFS at school?
And then we sort of, I’d like to, once you kind of dot point that out again, we’ll come back and talk about what schools can do to help, and you know, what can we have in the future, what does the future look like? So, what are the biggest challenges and vulnerabilities?
Shelley-Lee Waller 55:04
So, the biggest challenges, the biggest challenge for them, really, is about having a smaller – their life, once they’ve developed ME becomes much smaller, so they’re capable of doing a lot less. And they’ve probably already limited all of their home time, their outdoor activities. They’re no longer going and seeing friends, they’ve already cut down all of those things that make life worth living.
So, school is a big exertion. Just even getting ready and going to school is a lot of effort – walking around. So generally, it’s about sitting up, being able to concentrate, being able to take things in, if they’re not sleeping at night and the next day, they can’t remember what they learned the day before. So, the challenges are really across all parts – it’s physical, emotional, mental
Megan Gilmour 56:04
and social, as you said,
Shelley-Lee Waller 56:05
And social, that’s right, yes, so because of it being a multi system disorder that affects the brain and the neural neurology, there isn’t a part that’s really not affected; their ability to learn, to think, to communicate well, and to have the energy to actually be able to maintain getting to school. So, it’s quite the challenge.
Megan Gilmour 56:36
Yes, so we’re talking about a debilitating illness, condition, disorder. We’re talking about unpredictable, needing to chunk things down and adjust our expectations, as much as create adjustments for mode, and it sounds like a range of adjustments there, depending on that different presentation in that week or day or what’s going on at the time, to be able to have almost a suite of options that could be applied for different scenarios across different times.
Shelley-Lee Waller 57:22
Yes definitely. We’ve had a table that’s been produced and published on our major support organisation called Emerge. So, it’s a really good resource for teachers or parents if their children have ME, and it is based on the level of severity. So, for some children, it’s, it’s not feasible to actually have them present. And for others, they can be present, but at a reduced load.
And for Ethan, at some points – he was just doing one or two subjects at a time, and we would choose subjects that he was most, you know, so that he could be successful in them, we would choose subjects that we knew he could succeed, rather than picking the hardest thing. So, there needed to be a lot of adaptivity from the school’s perspective, but somehow, they managed to make it work.
Megan Gilmour 58:24
Yes. And so, an Individual Learning Plan is a must.
Shelley-Lee Waller 58:30
Yes, absolutely.
Megan Gilmour 58:32
And we know that the Disability Standards for Education provide support for students in Ethan’s circumstances, students experiencing chronic conditions or having a serious injury or a critical illness or mental illness, and all of those multi morbidities that might be at play as well –
Shelley-Lee Waller 58:56
Yes
Megan Gilmour 58:58
And often, schools don’t make the association between the Disability Standards for Education and a medical or mental health condition. So, that’s the first thing that we get the school across, is that, hey, there’s already the standards there, the Standards already outline a whole range of things that schools know that they are regulated to provide, and that that’s every single school in Australia, which makes it an excellent regulation.
And so, what I’m hearing is, as the Standards provide for adjustments, could you just pinpoint some of the adjustments that were made, some of the accommodations that were made, and that sit in this table that Emerge has on their website, that’s E, M, E, R, G, E, emerge.
Shelley-Lee Waller 59:49
That’s right, yes. So specifically, there were some physical adaptations, so making sure that his locker was where he didn’t need to go upstairs, or he could have a set of textbooks at home and one at school. Some things that just limited the amount of physical things he needed to do when he actually was in school.
And then he had his subject load reduced right down, so that he would do his senior over a long period. That was also happening, I guess, in the earlier years as well, where they were just reducing the academic load so that he might have assignments that were broken into smaller assignments, so that he could demonstrate the learning and the skills.
But he just didn’t have to have the exhaustion of having to have very long essays, for example. He obviously wasn’t writing, he needed to have a scribe or access to a computer. And sometimes he would have exams, and that they were broken up over a couple of days.
Megan Gilmour 1:01:00
Yes, and assessments, I suppose, longer period, a lot, a longer amount of time to do the assessment.
Shelley-Lee Waller 1:01:08
Yes. So, he was given – for some people that makes it harder. You know, the longer it is, the harder it is. If he could rest, he could have 20 minutes where he was lying flat and then get back up and work, work away on. For example, in his ATAR exams, that was how he – some exams were nearly four hours, by the time he was writing for half an hour and then lying down, and coming back, it took a lot out of him. And for some people with ME wouldn’t have been well enough to even to do that.
Megan Gilmour 1:01:47
Yes, and then just hearing you say this, and we talked about the provision of two-way digital connection to school, when Ethan was able to, and we talked about the one-on-one time that teachers gave for catch up or for critical elements of curriculum to give that support.
So, there we have a whole range of things that a school can do, yes, and that a school can even, you know, have additional funding from their own system or from the federal government, through Disability Standards or disability levies,
Shelley-Lee Waller 1:02:27
Yes
Megan Gilmour 1:02:28
And that, you know, there are probably plenty more things that schools can come up with and do to provide this flexibility for students like Ethan.
And I just want to add in here – I think this is a gold medal performance here by Ethan, just to be able to do what he’s done. I mean, I’ve heard what you’ve said, I haven’t lived it firsthand, I do have some experience in in, you know, chronic or critical conditions over a period of time. These kids deserve a gold medal. What they can actually do, and sometimes you just don’t know how they’re doing it.
Shelley-Lee Waller 1:03:08
Yes, I agree. I think that quite a few of us would have, you know, nodded, I mean us as well as teachers, you know, halfway through we would have said, Is this really possible?
Megan Gilmour 1:03:20
And is it worth it, you know?
Shelley-Lee Waller 1:03:23
And probably, and we, and we did say at stages say, look, he’s probably not going to graduate. But that didn’t matter, because he was still getting that social connection that he craved. So even if at the end of day he didn’t graduate, it would have been considered an absolute success from our perspective, because it kept him able to be connected. It kept him connected to those friends that he now still sees, who will come over to play board games on nights when he’s well enough for that.
Megan Gilmour 1:03:53
There should be a school measurement for that, right. So there’s measurements for attainment, and I’m just thinking about it now, if you can maintain your social connections and get through and have some relationships that continue, yes, have engagements that create meaning for you, that your attendance is also measured in belongingness to community, and your contribution that you can make when you can get there, and all of that. I think this is what wellbeing means to me,
Shelley-Lee Waller 1:04:30
Yes absolutely
Megan Gilmour 1:04:32
And I’m sure just listening to you share about Ethan, that’s what I’m hearing, I mean, that’s why he’s getting up. That’s why he’s, I mean, the exertion that he would have to exercise in his situation, to do that, yes, is, it’s an extraordinary thing that he’s done. And to make it to the Conservatorium of Music, to be able to pursue, not even an outcome, but to be able to do music. So, we’re often talking about outcomes from school, but what about just experiences? What about just actually the process
Shelley-Lee Waller 1:05:17
Yes, you’re right
Megan Gilmour 1:05:18
Just the process of doing things, of being there, of playing an instrument, of hearing it, of enjoying it, collaborating
Shelley-Lee Waller 1:05:27
Yes, collaborating with others that like or love music and make things and create things
Megan Gilmour 1:05:32
Yes, and yes.
Shelley-Lee Waller 1:05:33
That’s really good reminder to me as well, because he’s into his third-year subjects now, and we do think, oh, dear, what’s he going to be able to do? What can he manage? Will he be able to have his own home studio and be able to make money that way, but you’re right. It’s, it’s not just about that, is it? It’s about being able to do what you want in your life, having some control over it
Megan Gilmour 1:06:01
Yes, having some choice
Shelley-Lee Waller 1:06:02
And share it with people that matter.
Megan Gilmour 1:06:04
Yes, well, I mean, I know myself, I’m a very outcomes driven person, and I’m often reading, and Rick Rubin’s book is really great on this is, you know, the actual participation, doing something because you enjoy it, it’s meaningful, yes, and then the outcomes come from that. It’s not the other way around, right?
Shelley-Lee Waller 1:06:35
Yes, that’s right
Megan Gilmour 1:06:36
And one can never know just what can happen, but being present, yes, is the fundamental precondition for anything else,
Shelley-Lee Waller 1:06:51
For all of those possibilities, yes. In grade eight when this happened to him, sure he had some dreams about doing things with music, but it didn’t, it was only just the bit of dry kindling, you know, at that stage, and had he dropped out of schooling, then there’s no way he would have been able to do what he’s done without the support.
Megan Gilmour 1:07:18
Yes, it’s just wonderful.
Shelley-Lee Waller 1:07:20
Yes, we’re just forever appreciative, really, that he was in a place where he had the support. We were able to get the medical specialists to write the letters to support the school. But, you know, because the school has to tick off all the boxes. They have to make sure that they’re being fair and that they are doing everything right by all the other students in the school as well.
Megan Gilmour 1:07:42
That’s right, yes, it just shows what’s possible, really, all of this, and then, as we sort of start to sorry, Shelley, were you going to say
Shelley-Lee Waller 1:07:54
Yes, I was going to say, he didn’t end up developing severe depression or anxiety, or any of those things. And I really put that down to really maintaining that school connection he’s sure
Megan Gilmour 1:08:06
That’s a really critical point. I think they call this social prescribing. Now,
Shelley-Lee Waller 1:08:11
Yes, okay,
Megan Gilmour 1:08:15
Yes, there’s this term now it’s social prescribing. So, when people engage with different parts of the medical system, or a pharmacy or an allied health service, we should be looking out for, you know, referrals to things that they can do, use those opportunities to, I guess, as an early intervention opportunity towards better wellbeing, and – I don’t know if we can ever avoid mental health issues, I think it’s part of being human right – but to actually reduce the risk of anxiety and depression. And the things that occur throughout our journeys and matters of life that can be helped along the way.
And so, I’ve started to say that school connection is a social prescription for wellbeing.
Shelley-Lee Waller 1:09:23
Yes, yes, absolutely,
Megan Gilmour 1:09:24
Through learning and peer connection and teacher connection and yes, and, and critically, as you’ve shared today, doing things that we enjoy and that matter to us and that add meaning to and purpose to our lives. That’s the same for kids too.
Shelley-Lee Waller 1:09:42
Yes, I just think to myself, how demoralising, you know, they’re already dealing with something that you wouldn’t find adults being able to deal with, this kind of debilitating condition, without having your own community say ‘oh, well, we’ll just throw you out on the scrap heap now, because
Megan Gilmour 1:10:02
You’re invisible, can’t even see you. You’re not here-
Shelley-Lee Waller 1:10:06
How demoralising is that for a child-
Megan Gilmour 1:10:09
Well, the message that it sends is, you don’t matter.
Shelley-Lee Waller 1:10:13
Yes
Megan Gilmour 1:10:13
And I don’t even know that children could even articulate that, but the feeling of it, the feeling of just being forgotten. I witnessed it firsthand, and that’s why I’m sitting in this chair today, having this conversation, and as we talk about Ethan, to just be able to celebrate what is possible.
And that leads us to our almost last question, which is: What vision do you have for our education systems? I want to say in the future, and that’s actually what the question says, but I’m going to change it, and I’m going to say: What do you think schools could do to make it better today, right now? Like, what does that look like for you? Just with an imagination running wild about possibility.
Shelley-Lee Waller 1:11:11
Well I like to think that some schools are already living this vision that they’re identifying patterns of absence and seeing that there may be issues that need to be recognised and dealt with before they get worse. So that kind of preventative, that early recognition.
For Ethan, we know that if he’d been recognised earlier and diagnosed earlier, that he would never have got that severe because we had no advice he was pushing through when he should have been pacing himself and resting.
So, so for us, the absolutely overlying vision is that parents and school and teachers will know how to be able to recognise when things are starting to go south for that child and be able to do something about it.
Megan Gilmour 1:12:09
As a matter of business as usual.
Shelley-Lee Waller 1:12:11
Yes, exactly, whether or not the child can tick off their attendance, 85-6% or whatever it is that that shouldn’t matter, because that child is still worth educating. No matter how they use that education, that child still matters. So, yes.
Megan Gilmour 1:12:35
Yes, absolutely, Shelley. And as we move to the last question, which is: Is there anything else that you want us to know about school, quality of life, for ME/CFS, or anything that we’ve missed that you want us to know.
Shelley-Lee Waller 1:12:50
I think, look, I really think that I’ve probably covered it Megan, I only just did kind of sort of want to say that sometimes the best things that happened to him were with the telepresence robot, weren’t actually in the classroom.
Sometimes they would set the robot up in the lunch break so he could chat to his friends, or one day, he turned up and they had him – the robot – lined up. They switched it on, and it had been lined up inside the school photo. Of course, Ethan hadn’t been in a school photo for years, and he was like, ‘What am I doing here?!’. He was a bit embarrassed at first, but they were like, ‘No, Ethan, Ethan, Ethan, we want you to be in the school photo’!
Megan Gilmour 1:13:42
I love that.
Shelley-Lee Waller 1:13:43
So, we’ve got this photo of the telepresence robot screen in the middle of all these other smiling faces, which is such a symbol of how he experienced school.
Megan Gilmour 1:13:54
And it’s so easy to do, if you remember, and you think about it, isn’t it?
Shelley-Lee Waller 1:14:01
Yes, we’ve got no record of him being at school, like, so far as school photos since, you know, from grade eight onwards. But that year we got him.
Megan Gilmour 1:14:11
Oh, that’s brilliant. And we love hearing these stories. We often talk about the big things about this connection, and then somehow, what’s more important is these little moments. It’s like, ‘well there’s no record of me being at school via these’, and we all know these school photos, right? They’re iconic, classic head shots!
And we’ve heard that. You know, students have gone to their end of school dance, like in year 12, like their dance, and that the robot was actually there. And we’ve got video of this sort of stuff, and it does just show us that school life is more than maths or English, numeracy, literacy, science. It’s about music, it’s about art, it’s about togetherness, rites of passage, all of those things that school is so important for. And then the learning takes place within that, actually,
Shelley-Lee Waller 1:15:26
Yes, exactly. There are so many things that they have to miss out on, and then there are these things that they don’t need to miss
Megan Gilmour 1:15:35
Excursion, camps, wow,
Shelley-Lee Waller 1:15:36
Wow, yes, yes
Megan Gilmour 1:15:38
So, yes, it’s a such an important place, yes, well, as we move to wrap: What’s your call to action for ME/CFS in seven words or less?
Shelley-Lee Waller 1:15:53
Ok, I think that really, it’s about just listening, learning and having compassion for people that have this condition.
Megan Gilmour 1:16:05
It’s, yes, perfect wrap. If presence is a precondition, then compassion makes it all work after that.
Shelley-Lee Waller 1:16:17
Yes
Megan Gilmour 1:16:20
So, I just want to thank you so much today, Shelley for sharing. I acknowledge that as a parent with a lived experience, it’s often triggering to talk about these things again, and to have sort of moments of terror, moments of pain, brought up or touched upon again.
So, we really appreciate your energy and time and knowledge and your compassion and willingness to do this so that we can get more information out there, and whether it’s for teachers, whether it’s for parents and carers, whether it’s for policy makers, it’s all so important. And to give a shout out to the Emerge organisation [www.emerge.org.au], and you know, go there, check it out, read, donate.
And Shelley, we didn’t touch on this very much, but would you like to say something about your support group? Would you like to send people there?
Shelley-Lee Waller 1:17:30
Yes, if you’re a carer or a parent of someone who’s a young person with ME/CFS and related conditions, so we certainly have a lot of children who also have long COVID, dysautonomia and POTS [Postural orthostatic tachycardia syndrome] who are among our group.
And, yes, it’s called, obviously, Parents and Carers of Young People with ME/CFS Australia [www.facebook.com/groups/164952131125972]. It’s just a really safe space where all our learnings like this can be shared, where people can actually search for threads that, you know, similar circumstances may have come up with them, either around education, or any aspect of their child’s illness, and their treatment and management. So, yes, we’ve actually had, GPs and specialists refer their patients back to us now, knowing how valuable that it is to have someone else who’s going through the same journey, or very similar journey, to you. It’s especially important with an illness like ME that is very misunderstood.
Megan Gilmour 1:18:35
Yes, that moral support apart from anything else,
Shelley-Lee Waller 1:18:38
Yes, absolutely
Megan Gilmour 1:18:40
Shelley. Thank you so much for being on the Live & Learn webcast today and for your generosity in sharing
Shelley-Lee Waller 1:18:48
And thank you for the time to talk about it.
Megan Gilmour 1:18:54
Thanks everyone for tuning in. Help us turn up the volume so all kids are seen and heard. Follow along, like, share, comment, or leave us a review, because we love hearing from you. And if you want to donate, head to www.missingschool.org.au, because every dollar makes a difference.
View the episode here.
