RECORDED: Fri 27 Feb 2026
SPEAKERS: Megan Gilmour, Anne Wilson
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.
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.
Today on Live & Learn we have with us, Anne Wilson. Anne commenced as CEO of Emerge, Australia in June 2021 the national patient organisation for people with ME/CFS and long COVID.
A highly experienced CEO and Managing Director, she has led restructuring and growth across health, education and the not-for-profit sector, including respiratory and renal health. A Stanford Graduate School of Business graduate with degrees in human science and adolescent health, Anne is active in national and international patient advocacy roles.
So today we’re here to talk about supporting school connections for students with complex medical and mental health conditions. Let’s head to my first question, and before we do that, I’ll say a big welcome to Anne. Thanks for joining us today, Anne.
Anne Wilson 01:52
Great. Thank you for having me.
Megan Gilmour 01:58
So, Anne, tell us how ME/CFS and long COVID impacts kids and why it’s something every Australian needs to know and care about
Anne Wilson 02:08
Okay, so, of course, you can’t have long COVID unless you’ve had COVID. And so, the world changed in 2020 when we witnessed, for some of us, could have been the first time in our lives, a pandemic. And of course, people were very, very sick. Many, many died of COVID.
But then what started emerging, from about mid 2021, onwards, was that whilst those lucky people who got COVID and were able to fully recover, there were many that were not able to fully recover, whose condition just lingered. And it’s that lingering of COVID in your system that’s the constant activation of your cytokines in your body that has led to the title of long COVID.
So, strictly speaking, if you’ve had long COVID for about six months, you are classified, or 45% of patients with long COVID could be classified as having ME/CFS, myalgic encephalomyelitis, chronic fatigue syndrome.
And we call it ME/CFS because it’s more than a syndrome. It is a disease that was classified by the World Health Organization in 1969, and we use ME/CFS for short, because the alternative is such a huge mouthful.
So, your question relates to the impact of long COVID on children and young people in schools. Is that correct?
Megan Gilmour 04:15
That’s right, yes.
Anne Wilson 04:16
So, what, of course, started happening was, that as more and more people got COVID, more and more families had COVID.
And like with anything, like the flu, like anything, unfortunately, the quality of our air in our schools and in our homes is such that if you have a family of three or four children who are at school or preschool, one comes home with an illness, and then it just goes around and around in a circle, and the whole family gets it maybe once or twice.
But when it’s COVID, and if it turns into long COVID and ME/CFS, the problem is that it becomes an energy limiting disease, and it robs the person’s ability to do the kinds of things that they would normally do.
So, for school children, and it’s particularly sad for school children because they’re young, they’re used to being full of beans and full of energy. And for teenagers and university students in particular, all of a sudden, because your immune system is in overdrive, you just have no energy.
In the same way as if you don’t charge your mobile phone at night, or if it’s faulty, you’ll wake up in the morning and you’ll have no charge, so you won’t be able to use that phone until it’s recharged. Well, your body is exactly the same as, like a battery.
With long COVID and also ME/CFS, people have very limited energy, and when they go to bed or want to go to sleep at night, they would hope to wake up in the morning filled with energy to start a new day.
Well, people with ME/CFS and long COVID don’t have that happen, because they go to bed at night and their battery never recharges, so they wake up in the morning even more tired than they were the night before, and their ability to perform any daily tasks that are part of their normal life is diminished by the severity of their condition.
So that means that kids can’t go to school, young adults may not be able to go to secondary school or university, and obviously, people can’t go to work. And in the case of working mums, they can’t work. They can’t do the work that they would do as a parent and as a person at home.
It all impacts, and we don’t have a cure. So, it impacts children and young people in the same way as it impacts adults and older people.
Megan Gilmour 07:17
Well, that’s certainly something that every Australian needs to know and care about, and as we go through this time together, I’m sure that more of your incredible knowledge will unfold for any unanswered questions, because certainly you’ve got my attention.
So, many people probably assume things about ME/CFS and indeed, maybe long COVID. What’s the million-dollar question that you get from parents or loved ones when their child experiences or is diagnosed with ME/CFS?
Anne Wilson 08:01
The million-dollar question usually is around, where can I find a GP who can properly diagnose me. That’s probably the million-dollar question. I can’t find a GP who knows anything about ME/CFS. And I’d like to emphasise that’s not the fault of the GP.
You know, these are diseases that have well, you know, thanks to long COVID, we’ve been able to shine a light on ME/CFS. So, that’s not a bad thing, but the reality is that these are diseases that many of our clinicians have not learned anything about at university in their pre-clinical training.
And it’s a disease, for example, in Australia that – ME/CFS alone accounts for 250,000 people, 90% of whom are undiagnosed because they can’t get a diagnosis, because their GPS can’t diagnose them. And that is a huge issue.
The other huge issue is that 75% of those people are women. So, it’s predominantly a disease of women. And then you need to add on to that 250,000 a percentage of the 400,000 people with long COVID.
So, we’ve got a disease in prevalence of somewhere around the half a million people, as I said, many of whom are undiagnosed, who just want a cure. You know, you’ll go to a doctor, and people will have a whole range of symptoms unique to them. And nine out of 10 doctors will say, well, let’sdo some bloods, let’s do this, that and the other, and they’ll all come back normal.
So, the GP has nowhere to go. What do you do? Normal blood readings, full blood examination is normal. Kidney function normal. Everything else is normal. And it becomes a real challenge, both for the clinicians and the patients, because patients are often sent home and told, ‘go to bed and rest’. Or they’re told, ‘it’s just deconditioning. If you start doing some exercise, and get into shape a little bit more, you’ll be fine’. Wrong, very wrong.
Or people are told, ‘you might need some psychological help for this. You might just be imagining this. It may actually not be true, because, after all, there are no lab results that demonstrate you’ve got anything wrong with you.’
Megan Gilmour 10:56
So, no one can check the battery level.
Anne Wilson 10:59
No, no. It’s not like putting your phone on charge and saying, oops, I’ve only got 4%
Megan Gilmour 11:06
Yes, but in effect, that’s what’s going on in the body. What’s the most important thing that you want people to know when they come with that question?
And you’ve given us an incredible context there for the prevalence; how many people are living with this and are undiagnosed, that we know it’s a majority affecting women and that they want to know where they can find someone to diagnose.
What’s the most important thing, and that you want them to know when they, when they come with those questions.
Anne Wilson 11:52
The most important thing is to keep being inquisitive and looking. I mean, at Emerge Australia, we actually have what we call a GP aware directory on our website, and we’ve got it for each state and territory where we have listed practices, where there has been at least one GP in that practice who’s done some of our clinical education.
We won’t go into how ME/CFS is or isn’t funded, because that’s just a disaster. However, there are some clinicians out there, and unfortunately, the challenge we have is empowering our patient population and our carer population to keep knocking on doors, keep making phone calls, keep at it.
Be empowered to go out and get what you need, because it’s not going to come to you. I mean, no doctor is going to come knocking on your door and say, I heard that you’re actually house bound with ME/CFS, can I help. It isn’t going to happen like that.
But one of the best things to do is to go to an organisation like Emerge Australia, where you can first of all go for support. So, we’ve got nurses who answer our helpline, who can talk to you confidentially about your condition and what your situation is, and can make suggestions as to where to look for what information.
I think one of the most powerful things that patients, parents, families can do is arm themselves with every bit of information about the condition that they or their family member has got – knowledge is power.
And some of these patients go into a doctor’s surgery, they feel absolutely rotten, but they’re going in with a very, from a disempowered perspective. We need patients to say, look, I think I’ve got this, and I’m keen to have A, B and C done as a test. If you can’t find a doctor to do what you believe needs to happen to help diagnose your condition, there’s another doctor next door, and in the next practice.
Go and find a doctor that will help you. You don’t have to stick with the doctor you’ve got if they’re not giving you what you need.
Megan Gilmour 14:51
Yes, it’s such great advice. I imagine that that kind of response, that being able to – that most important thing that you want them to know, and to be able to find organisations like Emerge Australia for that empowerment.
Especially when, as you say, if you’re rotten and you’re up against it already with low energy and trying to overcome that inertia that might be present, as you said, through a whole range of reasons, which we’ll drill into as we go through.
So, I think it’s really, the only thing you can do is to keep going until you get that help that you need. And Emerge, obviously, is being able to give you that first foundational step to understanding what might be happening for you too, to have that empowerment.
So, if you’re willing to share, and we’d love to know what brought you into the world of ME/CFS and the associated long COVID that came after the pandemic?
Anne Wilson 16:12
Yes, I’d love to share. So, my base training was in social welfare work, and I worked as a social worker in education for a number of years. So, I’ve got a bit of a passion for my work that I did in schools many moons ago.
I then entered the not-for-profit world and worked for a not-for-profit organisation, Oz Child and started their school support service. And then I moved across into health, and I worked for a while at the MS Society, running an attendant care agency of theirs.
And then moved across to the Victorian Deaf Society, where I was their Executive Officer for a while, and then I landed my first CEO role with Asthma Australia as their CEO of their national organisation and Secretariat.
And I moved from there to my once in a lifetime role that I had as the Chief Executive Officer of Kidney Health Australia, where I stayed for 13 and a half years, a role that I absolutely loved – I’ve loved all the work that I’ve done.
I left Kidney Health Australia in mid 2016 and just had a bit of a break. And did some consultancy, did some overseas travel, and just took a little bit of a break from being a CEO, I think, and did a couple of interim CEO gigs, just to sort of keep my hand in, so to speak.
And then people may be surprised to hear this, but then out of the blue, I got a message on LinkedIn from a headhunter who contacted me and said, ‘Look, I was wondering if you could have a look at this position description and tell me what you think of it.’ I went ‘sure’ – I wasn’t working at the time, and it was for Emerge Australia.
And I said, ‘Oh, this is a lovely little job’. I just, that’s all I thought. I didn’t even think it was about me. Anyway, he got back to me, and he said, ‘how would you like to apply? Would you consider applying? And I went, yes, okay, just like that. It was very casual. I said, ‘Okay, I’ll throw my hat in the ring’, and I did, and two weeks later, I was employed.
And that is my story of faith, because I absolutely believe – like has happened to me on two other occasions in Major CEO roles – it was, I call that my gift from God. So, I came into this role. It’s a gift. I cherish it. It’s an absolute privilege and honor to learn about the ME/CFS community and to represent them and my staff as the CEO, I really believe it’s an honor and a privilege, and I really do believe it’s a gift from God, and I love every second of my work.
Megan Gilmour 19:57
That’s such a great story. And yes, it’s beautiful to reflect on our journey in that way, isn’t it? I have so many examples myself of where I can link things back, and it’s always such an interesting conversation that particular question, because it is surprising that most people, say I just found my way into it. It came along, and it wasn’t even what I was doing, and here I am, and I’m absolutely grateful for this thing coming out of the blue. So, thanks for being willing to share your little insight into your story.
So, knowing all that you know, and it’s a lot that you know, it’s quite clear that it’s a lot, what’s your biggest hope for kids, in particular with ME/CFS, or indeed, long COVID and their families and loved ones when they’re navigating this.
What is your biggest hope for these kids?
Anne Wilson 21:12
My biggest hope in the first instance, is that there’s a cure, obviously. But in order to be able to get a cure, you’ve got to have an early diagnosis, a really early diagnosis.
The sooner someone is diagnosed with ME/CFS or long COVID, the sooner you can consider if, what of the treatments that might be available could be trialed, because there’s no cure, and really, every case of ME/CFS and long COVID is unique. No two cases are alike.
So that’s why it is so important that our GPs are aware of the gamut of potential treatments that they can prescribe, which is a challenge, it’s a big challenge. We need more clinical trials. We need more research in Australia.
We need more repurposing, more drugs being available for repurposing. You know, they will work on some people and not others. People will talk about low dose Naltrexone. They say it’s their life saving medication. Other people say, I’ve been taking it for three years, and it does nothing.
So, this is a very unique set of diseases, they behave in a unique way in each person. So, I guess my top priority for people who have children that have been diagnosed, or who are suspected of having ME/CFS and long COVID, get a diagnosis as early as possible.
And if you don’t get it the first time from the first GP you go to, go to someone else, just keep looking for an answer. Don’t just say, ‘Oh, well, let them go to bed’. Because, yes, they might need to go to bed because they’ve got no energy to do anything else. But as a parent, and I’ve got children and I’ve got grandchildren, I wouldn’t accept that answer. I’d be going up. I’m going to keep looking, where’s there a specialist, or how much is it going to cost?
And this is another thing. Health is not cheap, not when you’ve got these kinds of diseases. So, you need to think about that. And everybody has to think about it. I think about it before I go and have a major test done, you know, I should be having a mammogram done soon, but that mammogram is going to cost me over 300 bucks, so I’ve got to decide, I think I’ll do it in three weeks, you know.
And parents with multiple children that might also have other conditions. I mean, what a huge burden that is on a family.
So definitely try to get a diagnosis as early as possible in your disease trajectory. And if you can get a diagnosis, you know, try to do everything they tell you to do. So, follow the script, I would say. But sometimes, for some people, regardless of how carefully you follow what you’ve been told, your kids are trending downhill and they’re getting sicker and sicker.
Well, you know, you’ve just got to knock on more doors. You know, tell your GP, ‘I want a specialist referral’. What’s happening overseas? That’s the other thing, we’re living in an age where we can Google everything.
Now I’m not suggesting that Google medicine is the way you live your life, but you know, when I hear about someone having something and I think, ‘Hm, I wonder what else is out there about that?’ I go online, and I try to find everybody who’s dealing with that specific situation with that age group of children, you know, with all of those symptoms.
And you know you can, you can email people overseas. You know, doctors are very good at responding. Sometimes, you can just send an email, if they’ve got an email address, and you can say, I’m desperate. Can you advise me or anything?
You can also, one of the things that we don’t do well in either ME/CFS or long COVID is put a multidisciplinary team together and have the patient in the center. We’re really bad about that. You know, we’re not good at it in other areas of health, but ME/CFS and long COVID are particularly bad, and they’re areas where a multidisciplinary team is really helpful.
So, you know, you’ve got the patient centered care. So patient is in the middle, and you’ve got the GP, you might have a specialist, you might have a social worker there. You might have a physiotherapist, you might have an OT, all of these people.
There’s got to be a way that someone can coordinate these people to come together and say, what’s going to be best for my child? Sometimes I think it’s absolutely shameful, sometimes the coordination of that care falls to the parent.
Megan Gilmour 26:40
Yes, yes, indeed, and it’s unsurprising in these big systems, but I’m hearing you say again, advocacy, advocacy, advocacy, and without being your own doctor, use what’s available to you to find out what you can to assist that process.
I also heard you talk about the cost of a chronic health issue or even health crisis, and that this also can be sitting in the context of complexity that’s already going on for a family. And I want to just pull back in something you said earlier, which is often people, well, certainly in this context, somebody’s not working, either the parent or, if we’re talking about kids here, but even in the case of an adult, they’re not working as well while, while all of that complexity is going on and all of those costs are going up.
It sounds like there are also some common and perhaps frustrating, public misconceptions about ME/CFS. Have you seen this in your work and, if that is true, if there are these misconceptions, public misconceptions, how have you seen it impact people, and young people in particular?
Anne Wilson 28:11
The first word that comes to mind is laziness. Oh, ‘okay, they just don’t want to do anything. They’re lazy’. Blame the patient. If in doubt, blame the patient. Yep, they’re just lazy. Malingerers is another word that comes to mind, of course, sort of roughly the same thing, ‘they’re making it up. It’s not real’.
When I first started at Emerge Australia, someone told me – it was a parent, actually, who is a father of a young woman who got ME/CFS in her 20s, and she became bed bound, and she’s, I think, now been bed bound for about 10 years. When I started, and I heard about people being, going to bed for 10 years. I didn’t believe it. I went, ‘nobody does that!’.
Then I started meeting with people who have got ME/CFS and their loved ones, and I realised that I knew nothing and that the suffering of these families was just unbelievable. And yes, they do have loved ones, and we’ve actually got a database, believe it or not, of people who are bed bound.Many of them are GPs.
Megan Gilmour 29:49
Of course, it’s a population level issue.
Anne Wilson 29:51
Yes, so this is not an issue that attacks people from low socio-economic areas. It doesn’t attack only young people, or builders, or painters, or trades people. We’ve got engineers, we’ve got clinicians, we’ve got a whole range of psychologists who have got ME/CFS who are bed bound.
These are people who are desperate to be cured so that they could get back to their old life. So, these labels that people give them because they can’t go to a party or they can’t participate in something. It’s got nothing to do with them not wanting to do it or being lazy.
Megan Gilmour 30:50
I imagine too, off the back of that, would be that you look alright, they look alright,
Anne Wilson 30:57
Yes, and that is the, that is the big challenge. So next week, on the 10th of March, the ME Alliance Australia, of which I’m the Chair, is meeting in Canberra for our Parliamentary Friends group meeting for this year.
Megan Gilmour 30:22
I’m looking forward to it.
Anne Wilson 30:24
Oh, wonderful. And we’ve titled that meeting fluctuating energy, fixed systems. And the fluctuating energy is – and we’ve got basically younger people presenting, one of them being a 17-year-old who contracted long COVID and ME/CFS at the age of 13, and he’s there with his mum, who’s also got long COVID and ME/CFS. And their biggest challenges are that when you see them and they present in person in Australian Parliament House, Canberra, you wouldn’t think there’s anything wrong with them.
But what they’ve had to do in order to get themselves there is spend a week or two resting, very strictly pacing themselves so that they have enough energy on the day to speak, and then they’ll crash. Then, they may not have energy for another two weeks, because one of the strategies of addressing fluctuating energy levels is to very strictly and rigorously pace yourself.
So if you know that you’ve got a doctor’s appointment, for example, that you must go to, if you’re going at the end of the week – you will have three or four days in that week where most of the week you spend in bed, because that’s how you shore up your energy levels so that you can get out of bed on the day you’ve got to go to the doctor, be driven, go there, and then come home and go back to bed. And for most people with MECFS, that would be the only major thing they’d do in their week.
Megan Gilmour 33:28
Yes, it’s truly debilitating, by the sounds of it, and you’ve given us some big numbers, you’ve given us a lot of perspective about an insight, at least into some of the incredible challenges faced by people with ME/CFS and children.
How many Australian children and youth are living with ME/CFS right now Anne? Do we have that number – do we know? I think the incredible half a million, if we’re including long COVID at a population level, how many kids?
Anne Wilson 34:08
We don’t know. Yes, don’t know. And one of the challenges is no one’s been collecting that data. We have a registry, but we only started that registry about three and a half years ago.
The Australian Institute of Health and Welfare are starting to collect data on ME/CFS. There’s very minimal data being collected on long COVID and the split between children under the age of 18 and those who are over 18.
We don’t know. We don’t know. But what we do know is that people you know, our pediatricians in the major teaching hospitals say it’s real. We see kids with long COVID in the hospitals all the time. And it’s just really odd that no one’s counting the numbers.
But I’m sure that’ll come. We’ve now got an Australian Center for Disease Control and ultimately, you know, those figures will be – someone will be collecting those stats. But to the best of our knowledge, or my knowledge, in this interview, now, I don’t have any knowledge of a true figure.
Megan Gilmour 35:26
Well, that sort of shows why it sits in the shadows as well, right, when we think government drives from place of data and clarity and visibility. If we don’t have that data, it’s also going to compound a lot of the things that you’re sharing with us today.
And I’m just thinking back on, was it 1969 you said that this was classified? So, it’s really been painstaking to get any traction on that. And my next question was going to be, is there a risk of delayed diagnosis? But I think you’ve answered that one really adequately.
Are there any other complications that go along, especially for kids with ME/CFS, and I guess maybe I’m thinking about socially, or we’re about to go into the school area of our conversation, but before we do that, any complications that we might not have picked up yet, facing these young people?
Anne Wilson 36:34
Well, one of the things that has to be ruled out is other overlapping conditions with ME/CFS and long COVID and again, these are things that often take a long time to diagnose, which is why you need to really do your homework in trying to find a doctor that understands these diseases and can go beyond the obvious, when trying to deliver an accurate diagnosis, it is very challenging.
Obviously, if from a very young age, children just haven’t got the energy to do much, then they miss out on so much socialisation. They miss out on sporting activity; they miss out on so much of the enjoyment of life. They become old very quickly, because their world is so small. It has become so small and limited to what their experience of their disease is.
Now, luckily, we don’t have huge numbers of children in that situation, but I personally know of several young people who are incredibly impacted. And these are kids that are hospitalised and they’re tube fed, and they’re so, so weak that it would be a dream for them to be able to be like all the other kids are. And it’s very sad, and it’s tragic for parents.
Megan Gilmour 38:28
Yes, indeed. And I imagine not even having a distraction, or being able to engage in a distraction from the illness itself means that the whole experience of the illness is just exacerbated, because that’s all there is.
Anne Wilson 38:46
Yes. I mean, it’s dreadful. And you talk about mental health, I mean, all of us experience grief and loss at some time in our lives, and it’s not necessarily as a result of the death of a loved one. You know, grief and loss can be about not being able to fulfill your wishes and dreams of what you really want to do.
And that can you know in the right person that can spiral into depression, suicidal ideation, all of those issues, and that happens in young children as well. I mean, we know that developmentally, at about the age of, I don’t know, I think it’s eight to 12 or something, kids question life and death, and they become aware of death.
And if at that point in time in a child’s life, they start seeing themselves as being completely different to anybody else in the family, siblings, friends, etc. they can start becoming depressed at a very young age.
Megan Gilmour 40:07
Yes, and my next question, in fact, was to ask you if you had any comments about the siblings of children with ME/CFS or long COVID and how are those siblings impacted. Do you see that in your work, and would you like to comment on that?
Anne Wilson 40:24
Yes, absolutely. It’s really tough for the siblings. If they’re older siblings, first of all, the parents have to devote so much attention to the child with ME or long COVID, and that means that if they’re giving undue attention to the patient, then the other kids are missing out.
Now I’m not saying that that happens in all families, because as parents, we’re very adept and I think most parents, especially mothers are very conscious that they don’t want their other children to miss out. So, sometimes we overcompensate in some areas because we know we’re not doing it as much as we should in others.
But often what happens is, in the moment, you don’t notice it as much. So, when you’ve got the very, very sick child, etc., parents are caught up in all of that, and you don’t notice as much the struggles that your other children are going through, because your major focus is on the sick child.
But what actually happens after a couple of years, maybe a number of years, those children who are not sick, whilst they’ve got a loving relationship with the child who is sick, develop coping mechanisms that are quite independent of the family, because some of them want to just get away from this constant illness, you know.
And they develop their own sets of problems, not ME/CFS, but their own sets of problems that might lead them down paths that you would otherwise not want your kids to go down. And that’s not really a fault of anyone, but it happens, and I think every person, every parent or anyone that I’veever known, is always afraid of their kids going off the rails.
And the child that doesn’t necessarily have all their needs met, because parents are so stretched in putting all their efforts into one direction, some children will go off the rails, and that’s a very tough thing for parents to cope with.
Megan Gilmour 43:13
Absolutely, yes. And it comes back to what we were talking about earlier, about the duress that the family is under. I think you’ve just shone a light on what that can mean for siblings and the complexity around that, as you say, through no fault of anyone’s, it’s circumstantial and deeply, deeply, deeply unfortunate to be in that situation.
Anne Wilson 43:41
And sometimes those siblings feel guilty as well – feel guilty that they’re well and that their sibling is not.
Megan Gilmour 43:51
Yes, I spoke about this on a media interview yesterday about my own experience, which led me into my work, and my daughter as an adult has shared that carrying the guilt for being the well sibling, and even the pressure that it put on, through her lens, her relationship with her brother, because of those really complex feelings of that young person going through an extraordinary circumstance, essentially on their own.
They might have the physical safety around them or the physical provisions, but they’re going through an incredible crisis, and the attention isn’t on them. They’re navigating that on their own.
Anne Wilson 44:39
And they’re perfectly normal young people, they’re not selfish, they’re not anything. But, you know, I feel for the parents, both mothers and fathers. Because I’m a parent, first and foremost, I’m a parent, so I will always feel for the parent because you’re torn.
Megan Gilmour 45:07
Tough gig, really tough gig.
Anne Wilson 45:08
There are not enough hours in the day, and your time is so taken up with this beautiful person that you hoped would have a wonderful life, and is having not a wonderful life.
Megan Gilmour 45:22
Yes, and in some ways, because of the complexity of this, they feel a bit powerless, as you identified earlier in the conversation. I think I know the answer to this next question already, which is, what’s the current population of school age children with ME/CFS, and how accurate is it? So, we don’t know the answer to that, if we don’t know the population.
So, moving on to a bit more detail about school. We’ve got a few questions here, so feel free to answer and then move on. I think we’ll capture everything you’d like to say with the next set of questions.
Do kids with ME/CFS currently miss a lot of school?
Anne Wilson 46:14
Yes, they do. They do. And it fluctuates, because they’ll be good one day, bad the next, and they might go to school and feel great, but then they’ll be at school and then they’ll not feel great. And it’s because you can’t predict it.
And with a child, I mean, an adult can say I’m not feeling strong this morning, maybe I need to have a couple of days of total rest, and then I’ll be good for a day. But you don’t expect your child to say that.
Megan Gilmour 46:50
How would they – how would they know, really?
Anne Wilson 46:53
And so, the other issue is that, especially for children or young people in secondary school. You know, kids are smart, they want to learn, they go to school, they want to learn, they want to socialise, they want to have fun.
But then, when they start going into high school, some of them are very ambitious, and they end up being, spending an awful lot of time at home, which stresses them out because they’re missing out on schooling that their peers are getting. And they try to figure out what they could do in order to be able to use the little bit of energy that they have at home to do some schoolwork.
But that’s where the fixed system comes in, because the system is currently saying, well, we need you to go to a specialist, and we need a specialist diagnosis before we will accept you to be a student that can actually learn from home part of the time because of your illness.
Now, I don’t know if you’ve ever tried to get into a top specialist recently, but especially in this field of energy limiting diseases, you can be waiting six or eight months.
Megan Gilmour 48:25
And then what’s happening to school life. And you actually segue beautifully into the question that I had, which was, what are the critical times in the school life of a kid with ME/CFS and what should schools and families be prepared for?
And I think the answer to that is the critical times are when that energy limiting element is at play, and that could be every day, that might fluctuate between different people, as you’ve identified earlier.
And not only have we got the medical system kind of constraints and boundaries there, we’ve got a school that operates on a nine to three so if you’re awake from four to six every day or that was when you felt better, well, that’s not going to fit in with the school time frame, either. So structuralbarriers to participation.
Anne Wilson 49:26
There are. So, you know this just means that there really does need to be an education program for our schoolteachers and principals to understand that there will be some children in their school that suffer from an energy limiting disease like long COVID or ME/CFS.
And special arrangements will need to be made for those children to be able to still feel part of the education process, have access to the work that would need to be done, but treated with some degree of flexibility in terms of what can and can’t be achieved over a period of time.
And I would like to add in there, because I just keep forgetting to say it. So many – so when we talk about energy limiting and post infection diseases, so much of ME/CFS, in particular, is caused by the Epstein Barr Virus, which is glandular fever.
A lot of young people get glandular fever between the ages of 15 and 19. And I just say that as a caution, because when someone gets glandular fever, there is a very high chance, because it lays dormant in your system after it leaves, and there’s a very high chance that you could end up with energy limitations that might fall into ME/CFS or long COVID. Of course, if you get a COVID infection on top of glandular fever, you’ve got a bit of a problem.
But they’re things that maybe people need to watch out for, and maybe even schools need to be aware that if you’ve had children in your classroom that have had glandular fever, then maybe for a while, they will have fluctuating energy levels,
And rather than perhaps perceiving them as being lazy or just, you know, not sleeping enough, people need to understand that these are conditions that cause limitations to your body’s battery and also need to be taken into serious consideration as far as workload is concerned.
Megan Gilmour 52:02
Yes, and this is the right time to say that the Disability Standards for Education is in place to do exactly the things that Anne is promoting there, which is to recognise the need for adjustments. And that can involve a whole range of things, including adjustments around exams and other things.
So anyone who’s listening, look up the Disability Standards for Education, which also really, in its current wording today, without any change, would enable a student to learn from home or learn from anywhere, not just in the school, and to use technology to do so, which is exactly what MissingSchool has been showcasing and demonstrating for years, of what’s possible when somebody can’t physically be present in an environment that’s a design issue in that environment, the structural access issue that’s preventing their participation, when actually adjustments could enable a participation that enables and suits them to be able to succeed.
Because I think what I’m hearing overall here is that the only thing that to get you through here, other than a diagnosis or great medical care, is hope that you can be better, and you will be better. Because everyone has dreams, as Anne said earlier, even children from a very young age have dreams that they wish to fulfill, even if it’s just being able to play.
So, as we’re into the last part of our conversation, I’ve got another couple of questions that take us to the end of our conversation, and if you’re okay to answer those. If you’re not, we can finish up here.
So, we’ve talked about some of the biggest challenges and vulnerabilities facing kids with ME/CFS, and I’ll hook into that one thing you did say, too doesn’t just apply to EBV. It’s also to have these children at a relative level of protection from other viruses, bacteria, and things that can make their situation worse.
Our second last question is, what do you see happening now in schools to address these challenges and vulnerabilities, and what do you think schools and governments currently don’t know. How could this be better for these kids who are really facing an extraordinarily difficult condition and diagnosis?
Anne Wilson 55:04
Good question. I think this is where the intersection between education and health is critical. Health can’t do it on its own, nor can education. When I say education, I mean the Education Departments.
I think collaboration. So, I’ve just come from Canberra this week, I’m going back next week. The big, big, big, you know, words that the ministers using our collaboration, alliances, working together, identifying new priorities, trying to look at how by pooling your resources and identifying what you’ve got in common, you can create change.
I think that at a departmental level, and I don’t know anything about grants in education, but at a departmental level, it will be critical for a curriculum to be developed that addresses various chronic and complex disease issues that face children and young people in the education system,
And provide – I mean, in medicine, we have clinical guidelines, I’m sure that there are some form of guidelines that can be developed collaboratively with the powers that be – that provide guidance for schools and school principals and student representative councils and parents clubs, whatever that give you some form of direction of first of all, understanding the severity of these conditions – they can have a lifelong impact on the child.
So, you’ve got to understand, no one’s faking it. No one wants to fake these diseases, they’re too horrible to fake. So, they’re real, they carry a huge quality of life burden associated with them.
They also carry a huge economic burden for the individual and for society generally. If these are people that are going to miss out on education altogether, then they’re not going to be employable, ever. They’re going to be an impost on the Social Security system.
So, it just kind of makes good sense to collaborate on a program of early identification, identification of strategies that schools can use, the deployment of school support services where you’ve got the potential for multidisciplinary approaches in education.
And, you know, it’s a long time since I’ve been in education, but I was part of a school support service that had social work, occupational therapy, psychology. Didn’t have physio, but today you’d have physio and OT all with the child in the middle saying, this is how we can best support this person.
And have that written down and documenting a strategy that goes out to all schools. And then have a system of, probably webinars. In medicine, you have CPD points for education of GPs around specific issues.
So maybe these are continuing teaching education points where, if schools and teachers do this training, they get some points that are good for their profession. I don’t even know if that exists, but anyway, I’m just taking something from medicine and putting it into education.
Megan Gilmour 59:38
Well, thank you, because you’ve actually done the best intro ever to the work that MissingSchool is doing. We’ve just finished developing a 30-unit teacher training course in a teacher community to do exactly that, and these conversations with organisations like Emerge Australia are to bring in that best level of information on different diseases.
But to actually work for a bedrock of a nationally consistent approach that schools take that’s, as you say, documented, but that at the same time, without the teacher needing to have a clinical understanding, that they can understand what that student needs with ME/CFS and how they can support them to learn, and so that’s really what we’re going for.
But to take a step back from that, because, yes, 100 out of 100 Anne for the way that you’ve shared how you see what needs to happen. But when you were talking about the minister’s call to action around collaboration and pooling resources and all those things to get a better outcome, what I thought you were actually going to say was that the Minister could see the way that the government could pool resources between health and education and collaborate, get education and health to collaborate as portfolios, to actually find a systematic and systemised support for these kids.
So, it was interesting that that call to action seemed to be focused on what everyone else should do.
Anne Wilson 1:01:29
Yes, I mean he’s the health minister, right, so, there’s going to be more coming out about the chronic and complex conditions framework that’s just been launched. But, I mean, this is the challenge, isn’t it?
We live in a confederated country, albeit, I believe the best country in the world, especially for health and education’s probably not that far behind. But you hear all sorts of things, so I really can’t comment.
But I do know that the two federal ministers that are in charge of health and education, Jason Clare and Mark Butler, they’re good guys.
Megan Gilmour 1:02:18
Yes, I’ve met Minister Clare and I agree with you, he’s a good man.
Anne Wilson 1:02:24
They’re good guys. They would like for nothing more than a platform that would be applicable across the country in education for issues like this. And I guess that I would never stop from trying to get those two portfolios together to build a project.
Megan Gilmour 1:02:59
That could be our goal Anne, maybe we join forces and make that our goal, because I agree with you. It’s, for example, a young person in clinical care, we want our hospitals and our clinical care settings to know that education is a right too for these children, and that we are all working ultimately, so that they can have a good future. And we can’t leave their education behind while they’re trying to get better and fighting to get better or resting to get better, whatever that is, we need to have those two things in sync.
I want to respect your time, so my last question would be, is there anything else that you’d like to say about school quality of life for these kids? Have you missed anything that you’re feeling compelled to share before we close out?
Anne Wilson 1:04:07
Not really, I guess, from the young people that I’ve spoken to, and there have been several, who’ve had ME/CFS, who’ve missed out on so much in their lives, it’s just so important that their stories are heard and that schools realise that these are often very, very intelligent kids that have got ambitions and hopes and dreams, and unless we actually understand what their needs are, in a genuine attempt to help them and their families navigate the systems of education and health, these young people will go into the category of invisible, unseen, unheard, unmet need. And I think that’s a tragedy.
Megan Gilmour 1:05:28
It is a tragedy, and it’s such an important note to close out on, because I’ve thought about this so many different ways over the 15 years that I’ve been living or working in it. We’re often talking about what we should do for these children, these young people, because that’s our work, that’s our passion, but I often bring myself back to, what is it that we’re not going to be able to receive from them – their gifts and talents and skills – that is as a community and a society.
Anne Wilson 1:06:10
It’s a huge loss.
Megan Gilmour 1:06:11
Huge loss, and when we’re talking about the numbers that you’re talking about, that’s a lot of kids and young people who can really – and have so much to offer.
Anne Wilson 1:06:27
Yes, yes. And you know, our current government that’s done a lot in health and is doing a lot of great things, came into power on the premise that nobody should be left out, and we really can’t afford, as a society, for these young people to be left out because they’re sick, because we don’t collaborate between government departments and areas like health and education, we can’t figure out a way forward. It’s just criminal really.
Megan Gilmour 1:07:16
We can do it. We can do this. And I, this is why we love and so value this call, because we see this as, at the coal face of things, we see it as collaboration. We see it as a joint belief in the kids and the young people.
We’re each in our own lane on a superhighway where we don’t need to even cross over in those lanes, but we can all be driving in the same direction together to get the policy change for the things that make a good life for young people.
So, do you have a call to action in seven words or less, or are you happy that you’ve made your call to action there in your last statement.
Anne Wilson 1:08:22
Yes, I think don’t leave young people with ME/CFS out of school. Don’t leave them out.
Megan Gilmour 1:08:36
Thank you. That’s a beautiful note to finish on, and you’ve been so generous today with your time, with your energy, with your knowledge and experience in what you have framed as a gift to you of the role of CEO of Emerge Australia, and so a big shout out to Emerge Australia.
You can find them over at E, M, E, R, G, E.org.au, emerge.org.au. Go there. Give generously, share it with friends who might need to have this information and knowledge and get behind this great organisation. Thank you for joining me today Anne on Live & Learn.
Anne Wilson 1:09:21
That’s a pleasure. Thank you for having me.
Megan Gilmour 1:09:24
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 missingschool.org.au, because every dollar makes a difference.
View podcast here.
