The Brain and Mind Centre's (BMC) Youth Mental Health and Technology (YMHT) were successful in our grant application for Wellcome Trust’s exploration into the correlation between Sleep and Circadian Rhythm Disturbances (SCRDs) and mood disorders in young people. 

If you are unaware, Wellcome Trust is a global charitable foundation focusing on science for societal betterment, by prioritising mental health, infectious disease, and climate health research.

This is our second research grant with Wellcome Trust; our first being their Active Ingredientsgrant in 2020. Similarly, this grant investigated the relationship between sleep/ wake cycles and young people’s mental health. Our paper focused on a young person's sleep/ wake cycles – what happens in the daytime is as important as the night-time. The young people with lived/ living experience involved in this grant highlighted the need for education and potential interventions and preventions one can implement in their daily life/

As mentioned, this grant investigates SCRDs and the influence of a mood disorder’s onset within young people. Our team at the BMC are specifically looking into the potential of using melatonin to treat these sleep disturbances and reduce the symptoms of a mood disorder experienced by a young person. Throughout this five-year grant, we have established five ‘Work Packages’ to investigate each element in the relationship between SCRDs and mental wellness.

These Work Packages investigate genetic and environmental influences on one’s SCRDs using biosensors, clinical assessments, wearable smart tech (like actigraphy watches and light-sensor pins), and co-design workshops to create an interactive model that is accessible, appropriate, and affordable for young people to understand more about the correlation between their SCRDs and their mood. 

Lived experience is core to each of our work packages. The nuanced expertise brought to research by individuals with lived experience enables a symbiotic and reflective investigation into the challenges and issues faced—in the case of this grant, young people with SCRDs and related mood disorders. Further, through this ongoing role across the Work Packages of lived experience, we can ensure that the outcomes, and consequential outputs, are delivered to young people where they are, and how they are. In this way, they intuitively consume education and seek support.

As mentioned in the previous blog post, throughout this five-year grant, we have five Work Packages proposed: each one investigating specific elements of the relationship between SCRDs and mood disorders in young people. Below is a brief outline of each package and the role lived experience pays.

Work Package #1 seeks to understand the potential for genetic influence on SCRDs that a young person may experience, to establish a distinction between circadian mood disorders and non-circadian mood disorders. Additionally, using data collected from a previous study conducted on twins/ siblings who have mood disorders, we hope to further distinguish circadian and non-circadian mood disorders by understanding whether an individual’s experience of depression was before SCRDs (non-circadian) or after SCRDs (circadian). We acknowledge that genetics cannot be the only influencing factor in the onset of SCRDs, but that environmental factors also (light exposure, daily routine, and pressures) – nature vs. nurture.

In this Work Package, our Lived Experience Working Group (LEWG) will be core in the review of the study protocols (their burden/ inconvenience on and acceptability by young people) and aid in translating the collected data to communicate to young people.

Work Package #2 will compare two types of biosensors, testing their validity in recognising the impacts of SCRDs. This test aims to establish a ‘gold standard’ for future use in diagnosing and caring for young people experiencing SCRDs. Much like the self-conducted, prick test for glucose levels in those with diabetes, our goal is to create a user-friendly, instant test for individuals to conduct themselves informing them on chemical levels associated with their SCRDs such as melatonin, cortisol, and growth hormones. This will be a world first as there is no current gold standard for SCRD testing, let alone one that an individual can do anytime by themselves.

The involvement of our LEWG is imperative to this Work Package as they will help refine and advise the point of care on how best to deliver this kind of test, best supporting the individual and their circumstances, affordability, user-friendliness, and burden.

Work Package #3 uses a combination of clinical assessments, self-report questionnaires, actigraphy and light-exposure trackers, and saliva and blood sampling to shed greater light on our proposed relationships between mood disorders and SCRDs. One of the two studies we conduct in this Work Package will have follow-ups at 6, 12, 24, and 36 months; the other will feature an overnight study.

Like Work Package #1, the LEWG will be a party to reviewing each study’s protocols, translating the findings, and supporting the targeted dissemination to fellow young people. Additionally, our LEWG will help provide advice on how we can ensure continued engagement in the studies (particularly that across 36 months).

Work Package #4 trials the use of melatonin as an effective form of anti-depressant as we propose the improvement of sleep quality (reduction of SRCDs) will correspondingly improve mood disorder symptoms. Our trial compares three groups: one group taking melatonin, another an online course;  Digital Cognitive Behavioural Therapy for Insomnia (dCBT-I) and another taking a placebo (no melatonin)  As participants will not know the group they are in (melatonin or placebo), we hope to understand if a casual intervention for SCRDs– like dCBT-I, can change symptoms of a young person’s mood disorder.

Our LEWG will be working with the trial’s research team to co-design the protocols for this study; this includes information sheets, consent forms, and modes of recruitment. Again, as this is a trial, our LEWG will help inform how best to retain engagement from participants. As always, LEWG will help with the communication of findings to young people.

Work Package #5 is the culmination of the previous four Work Packages, putting all our findings and data collected into a model that will be tested, reviewed, and scrutinised so it can be successfully released to the public. Our aim is that this model will support young people who experience SCRDs and the consequential onset of mood disorders by providing them with an online intuitive tool to understand and improve their experiences of SCRDs. Educational videos, filmed and featuring lived experiences of individuals, will help educate and introduce our proposed benefits of melatonin use and explain the importance of and how to use this model.

Co-designing our model with key end-users is essential for its success. Co-design will be across multiple workshops to map identified active relationships in and around SCRDs and mood disorder onsets like genetics, environment, and pre-existing mental health conditions. Alongside clinicians and academics/ scientists, lived experience will be core to the building of our model as the eventual release will be used by young people to educate themselves on what they can do to support their sleep and experiences of mood fluctuations.

I fall into the generational category of millennial; this also classifies me as a digital native. I grew up when computers were the size of microwaves, floppy disks were the mode of transferring documents, memes were shared in chain emails, “pshhhkkkkkkrrrr -kakingkakingkakingtsh -chchchchchchchcch ” was the sound of the internet, emailing was the closest thing to a text, both internet and home phone were on the same connection line (therefore you could only use one at any given time), and my parents' mobile phones were the size of a brick. This seems wild comparatively to newer generations’ access to technology and the instant delivery of information ranging from how your friend’s mid-morning is going through to the latest news on the Israel-Palestine conflict. Many have noted that as individuals, we double our knowledge every 12 hours; go back 70 years, and it would take us 25 years to do the same. Some argue innocence has decreased with this increase in knowledge and technological advancement – like anything; I believe a point can be reached where there can be ‘too much of a good thing’.

Advancements in technology have revolutionised health care and maintenance; my ability to track my mental wellness has been hugely impacted by the intuitive and targeted information I can receive from the smart tech I use daily; both through passive and active input. Strange to think that compiling data was a manual task of printing, filing, and storing physically.

Smart tech has enabled me to log my medications, the number of notifications I’ve received each day, screentime and individual app usage, monitor my BPMs/ heartrate, how physically active I’ve been, my current/ overall daily mood, and, importantly for me, monitor my sleep. All this information is at the touch of my fingers and provides apt insights into positive/ negative influences on my mental health—in real time!

As I have understood more about my sleep over the years (tracking, sleep studies, and understanding personal patterns) I’ve come to understand the incestuous relationship between my mood and my sleep/ wake cycle. To intervene I have used everything from meditation to light therapy, sleep/ wake medications, and attempts at regimented routines. While all have helped for periods, understanding my personal/ biological patterns has been the game changer—this is not to say my sleep is a model; it is just significantly better. Ten years ago, I was using a pen and paper sleep diary which was arduous, inconvenient, and less accurate– particularly when my mood was unstable. Now, I use my Apple Watch. Active or passive, it’s tracked; the information is understandable and easy to digest—I’m shocked every time I receive the notification that I have “reached my sleep goal”. Like I said, I am saved from disrupted sleep; I’m more aware of my subjecting to its fluctuations.

As this study hopes to create the first ‘gold standard’ measure for the existence of sleep and circadian rhythm disturbances in an individual (through your current chemical levels), I can unequivocally say that this information, particularly if it’s accessible in a way where I can administer and understand the results myself, would truly change the game. No question.

Above is an outline of the overnight sleep study process that we are conducting under this Wellcome Trust Grant. These sleep studies aim to establish SCRD-related biomarker baselines, in a controlled population. Establishing these baselines will allow for standardisation in measuring and comparing their relationships to mood disorder onset.

Some of the SCRD-related biomarkers we’re investigating include melatonin, cortisol, growth hormones, and noradrenaline.

Sleep - a distant cousin, a second cousin, a lost cousin. I don’t know who she is anymore. Still, she is just someone that my eldest daughter, first to go to uni, expected to be working at home, then working outside, then studying at home, then studying on the train, then cleaning the apartment, then organizing events for the family, then teaching my singling, then finishing another form and reading another report for my parents' self hasn’t gotten to know in some 20 odd years of being around on this giant ball of water and mud.

Sleep is always a quiet luxury in the halls of my home. I grew up in an environment where you are constantly expected to be better, do better, study more, and achieve the most because that was the only way out and up for a migrant family. Sleep always felt like an unreachable goal that was only awarded to someone if they had earned it. 

But how can you earn sleep? How do you measure what is worthy of being allowed to rest and sleep? You cannot. And so I got caught in a cycle of wanting to rest and feeling guilty about embracing rest and healthy sleeping patterns. Because even if your body was wiped out at the end of a long day, there was always something more to be done. Cook food, clean the house, teach someone and by the time you grow up, you start worrying about how you will make ends meet to pay your rent, buy your books or keep a roof over your head and pull your weight around the house. I told myself for years - oh maybe my body doesn’t need that much sleep. I would be fine. It would not affect me. Maybe I just function on a few hours of sleep. Maybe I am an insomniac. But after leaving home and finally finding a stable pace in life I realize - It isn’t that I do not want to sleep. But that, I have never had the safe space or the kind monologue in my head, I need, to embrace sleep as a welcome friend.

After years of getting it all wrong, sleep became an elusive concept to me. It sometimes still does not come naturally to me. I think I may arguably be better at riding a bike than being able to fall asleep. I mean I try to get it all right. I use those apps, I get the app blockers, I set timers, I set reminders, I change my wallpaper to be minimalistic, I leave my phone in another room, I try the no stimulation before bed, I try the white noise to make the crazy thoughts in my head, rest. I try it all. Yoga, hot milk, meditation, breathing. But sleep? Nope, not a second of it. Zilch, nada. 

My broken relationship with sleep makes it feel like a quite unachievable luxury because you are always burdened with the unsaid expectation of being busy with work, study or looking after the family. And if you are someone who does need to sleep or wants to sleep, or just really wants to rest -  there is so much shame associated with it because it looks like you are taking an easy, lazy, burdensome way out. Someone else has to pick up your slack. Or your sleepiness is a sign of disrespect towards those who are sacrificing and have sacrificed so much for you to be where you are.

When you are ‘all of these intersectional labels’ and the oldest child in a migrant family, sleep is privilege, a privilege you tell yourself you aren’t worthy of until you have achieved this elusive ‘good life’. Because you or at least I have been so heavily conditioned to believe that sleep is something you have to earn and that resting is a ‘rich people concept’. 

So a sleep cycle study like this that doesn’t just look at sleep as a medical concept, but also understands sleep as a social, emotional, and personal experience would do wonders for me.  And for hoards of young women I know who struggle with sleep. Because sleep is not a privilege, it is a necessity. And I am excited to be able to tell people that you do not need to struggle to be allowed to enjoy your sleep. You can do things here and there and you can measure things with simplicity to respect your body's need to rest and recuperate.

In the realm of sleep, there is a unique combination of sleeplessness, fatigue, exhaustion and having a ‘sprinkle sprinkle’ neurospicy brain that affects me more than it seems to affect my peers. Maybe it is having a 28 day hormone cycle that leaves me a blithering sobbing mess for 14 days and makes me feel like I can take over the world on the other 14. Or maybe it is that I am stuck in a world where we have glorified waking up at 7 am because that is the ultimate sign of productivity. Or maybe, I just don’t know why.

But what I do know is that since the time I could remember things and process things, I have never slept ‘normally’, Whatever that even means right? I have always been the kid who went to bed a little later than the other kids, who woke up a little later, who hated functioning before 10 am and could answer the questions of this universe with math and physics at 11 pm. When everyone was fast asleep. 

So I had accepted by the time I hit the ripe old chaotic age of 14 - I am a night owl. But I also so desperately wanted to be a morning person because not being a morning person felt like a personal failure? And that pretty much sums up my complex journey navigating sleep. While my body has in the past and sometimes continues to be absolutely wiped out and is ready to fall into a ball of cotton candy and be lulled by the good ole damsel called sleep, my brain is often making wee woo noises and dancing to an entirely different tune. Finding it difficult to wind down, sensory issues because there is too much light, not enough light, it is too hot, it is too cold, the blanket is not heavy enough, the clock is too loud, the thought in my head has not been resolved are only some of the reasons that keep me awake at night sometimes. 

More often than not, it is also my rejection of everyone’s neurotypical assertions, demands and everything in between when I unmask in the comfort and security of my 4 walls that prevents me from sleeping. ‘Revenge Bedtime Procrastination’ is what they call it, I just call it letting myself be a hot mess with no expectations because I am often struck with so much internalised guilt at not having healthy sleep habits, or embarrassment when I tell people I need little happy pills to sleep properly or to wake up and function that I just convince myself that if I only did things a little better, a little differently - I would not need them. And maybe, I would sleep just fine. 

Sometimes, the cliche suggestions have worked a little bit. Keep your phone away, no light stimulation, don’t eat just before you sleep, wind down, white noise, sleep masks, one alarm and not a stream of them, time block, an alarm to take my happy little pill and go to sleep, exercise in the morning or early evening, healthy meals, no sugar or caffeine after a certain time. But like everything else - I do not have the privilege of having a set routine and limited responsibilities. So I get it right for a few weeks, either life or the crimson wave throws me off balance and then I spend another 2 weeks getting it back on track. 

Sticking to a ‘routine’ that works around my moods, stress levels, hormones, lifestyle and one that modifies itself would absolutely change the game. I am keen to see what comes out of a sleep study like this because having my brain, body and experiences treated holistically could absolutely change my life. I know a lot of other folks with a static noise brain like mine just really want to thrive. But we are so crippled by the inability and helplessness to do so sometimes despite giving it our whole mind and effort, that we just give up on the idea of ever achieving restful and rejuvenating sleep.

The concept of a sleep study can be foreign to most. Only those who have participated in one – be it for personal health investigations or clinical studies—have an idea of what goes on. So understandably, the anticipation of what to expect can be daunting given our population. To help with this understanding, we’ve mapped out what you can expect across a typical sleep study experience down to the half hour.

At a basic level, we undertake sleep studies for two main reasons: to investigate an individual’s sleep and how it may be causing a particular health challenge or problem, and to explore the role that sleep/wake patterns have in a broader body of research. In the case of this Wellcome Trust grant on sleep and circadian rhythms in youth mental health, we are looking at the latter, which is how sleep, and sleep/wake cycles may be a core contributor to a young person’s mood disorder experience.

For a typical sleep study, collecting several data points over several hours gathers information and understanding of what happens in the body during sleep/wake hours. These samples are often bloods (e.g., chemical and hormone levels), saliva (e.g., melatonin levels), body temperature, heart rate, brain waves, and blood oxygenation. As shown by the diagram above, in many studies (including our own) collection of blood and saliva happen every couple of hours while you are awake. While asleep, saliva samples aren’t collected, but bloods can be collected each hour; brain wave activity, heart rate, and blood oxygenation are recorded throughout the night by polysomnography and electroencephalography (EEG).

The conduction of sleep studies occurs primarily within hospitals or specialised sleep study centres. While certain sleep studies are performed in the home (i.e., sleep apnoea tests), specialised facilities can control the factors in the environment that affect sleep and circadian rhythms and regularly collect/record necessary samples and data correctly (i.e., blood, saliva, body temperature, brain waves). Controlling these aspects allows for a more accurate reading. Some key influencing environmental factors include light exposure, blue light emitting devices (e.g., smartphones), food intake, temperature conditions, and sleep/ wake schedule. Each of these elements can influence sleep quality for an individual differently.

For example, screen use (TV, phones, tablets, computers) and the emission of blue light from any of these devices cause the suppression of the body’s natural chemical signal for ‘darkness’ , melatonin. This suppression leads to a prolonged awake state, delays sleep, and can diminish sleep quality. As you can surmise, controlling screen use is incredibly beneficial to establishing a baseline of optimal sleep patterns. Similarly, light exposure in general across the day (articifical and natural), has the same effect.

As mentioned previously, throughout a sleep study, specific samples and points of data are collected/recorded. These data points help assess and understand an individual’s sleep patterns, sleep/wake cycles, influences on sleep, and causes of sleep disturbances. So that samples and data recording are as non-invasive as possible for the participant whilst still gathering accurate data, researchers canplace an intravenous line (IV) to collect blood, and a series of cables attached by sticky pads to the body for the polysomnography and EEG readings. The only invasive form of data collection is the saliva samples– spitting into a tube at allocated collection intervals—and drawing of blood from an IV line (in the case of some, but not all, sleep studies).

Overall, sleep studies are short, overnight stays that can provide an accurate understanding of how one’s circadian rhythm and sleep/wake cycles affect sleep and life quality. In our Wellcome Trust grant, the recorded data from the conducted sleep studies will help us establish sleep and circadian rhythm disturbances (using gold standard measures) and their relationship with mood disorders in young people.

In research currently, the narrative of lived/ living experiences involvement is in the role of the researched. Although somewhat of a broad statement, it is informed by the lack of a ‘gold standard’ model for this involvement across any research discipline. Over the last five years here at the BMC, we have been growing our partnership with lived/ living experience across our portfolio, ensuring that we are respecting, understanding, and implementing their voices and experiences to better our findings and the outcomes that reach young people themselves.

It's a striking paradox that research projects, which are designed to make a real impact, often exclude the very individuals and communities they are intended to benefit. Shouldn’t the essence of research be to gain a deeper understanding and effect positive change? By involving those directly affected by the research, not just as subjects but as active participants, we can truly harness the power of their experiences and drive meaningful, positive change.

As said above, we’ve been working on the best way to truly implement the diverse voices of young people's lived/ living experiences in mental health and the servicing system. Appropriately, this has partnered with researchers, operational staff, budgets (yes, paid work), and lived/ living experience individuals. The product of this is an established, evaluable protocol for genuine partnership with lived/ living experience in research. Embedding the protocol across all our research streams has resulted in our specific research stream being dedicated to the voices of the lived/ living experience voice and integration. This protocol has been created to be evaluated [link to Sarah/ Grace’s paper] to ensure researchers' and young people's changing voices. It needs to address the best experiences of mental ill-health and the mental health systems (public and private).

The core of this lived/ living experience research stream is our Lived Experience Working Group (LEWG). As a previous blog post noted, the LEWG sits across all five of this grant’s work packages, assisting in data collection, translation, and communicating findings to other young people. Depicted above is a figure providing a snapshot of how we at the BMC changed the research narrative to researchers. Facilitating this partnered relationship between young people with lived/ living experience and our YMHT team is a planning group. The imperative responsibilities of the planning group are to ensure that the protocol is correctly followed, and that each interaction has a strong communication and feedback loop before post-working group meetings. As this protocol is evaluable, quarterly surveys (with the option to complete anonymously) and a follow-up feedback session will be used to understand further and aptly meet any changes (within our remit) to better and respectfully continue.

The relationship between lived/ living experience and the research community has historically been one of researcher and researched - a 'us vs. them 'mentality. However, at the BMC, we are actively working to change this dynamic. We have recognised that this dichotomy is stagnating research, hindering grant successes, and further stigmatising the value lived/ living experience has in the research community. We are not perfect, but we are committed to continuous improvement and progress by establishing an evaluable protocol that aims to change in the guise of respect and impact.