Radically different
Background: Despite being established risk factors for poor mental or brain health outcomes in aging, rest-activity rhythm (RAR) disturbances are not routinely monitored or treated. This is, in part, due to a lack of clinician-friendly RAR monitoring systems. Objective: We tested the feasibility and acceptability of personalizing a 6-week behavioral intervention using RAR monitoring from a consumer wearable device (Apple Watch). We selected a target population study of people with dementia and their family caregivers, given that rest-activity pattern disturbances are common in these groups. Methods: This single-arm trial enhanced a behavioral activation rhythm treatment with the Apple Watch–based app myRhythmWatch, providing users and their therapists with objective RAR monitoring for customizing therapy. Therapists used information from the myRhythmWatch app to visualize the participants’ behavioral patterns, identify treatment targets, and track progress. Participants included 21 older adults (15 dementia caregivers: mean age 61.8, SD 8.4 years; 6 people with dementia: mean age 81.45, SD 8.5 years). Feasibility outcomes were as follows: (1) proportion adherent enough to assess RARs (defined as ≥3 consecutive valid days with ≥20 hours per day) and (2) the total number of valid days. Acceptability was measured via the Likert scale to gauge participants’ satisfaction with the intervention. We secondarily examined preintervention and postintervention changes in depression (9-item Patient Health Questionnaire scores) and insomnia (Insomnia Severity Index) scores among a smaller group of 11 caregivers who completed these measures. Results: All 21 participants obtained the minimum data requirement for characterizing an RAR snapshot. Caregivers averaged 35 valid RAR monitoring days, and all 15 caregivers were still using the app at week 6 of the trial. In contrast, people with dementia averaged 30 valid days, and of the 6 people with dementia, only 6 were active users at the end of the trial. On average, caregivers completed 5.7 (SD 0.46) of the 6 therapy sessions offered, and participant satisfaction with program components was “high.” Depression symptoms improved with medium preintervention and postintervention effect sizes (=2.417; =.02; Hedges =0.67, 95% CI 0.04‐1.28), and there were large effect size improvements in insomnia symptoms (=3.377; =.004; Hedges =0.94, 95% CI 0.25‐1.61). Conclusions: These findings show that older adults without dementia were highly engaged with RAR monitoring. This supports the feasibility of personalizing interventions for older adults with objective RAR monitoring. Randomized controlled trials are warranted to determine whether adding RAR monitoring improves intervention efficiency, efficacy, or durability. While feasible in a subset of people with dementia, we observed lower use rates indicating that there are more barriers to implementing long-term consumer wearable–based RAR monitoring in people with dementia. Trial Registration: Clinicaltrials.gov NCT05309577; https://clinicaltrials.gov/study/NCT05309577
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Researchers at The Ottawa Hospital and at the University of Ottawa have been able to reverse certain behavioral symptoms in a mouse model of autism by fixing a problem in the endothelial cells (ECs) of brain blood vessels. Building on studies in a 16p11.2 deletion mouse model of ASD that identified brain endothelial cell abnormalities, the team linked 16p11.2 deletion with reduced levels of ATP in endothelial cells. They found that activating P2Y2 receptors rescued the 16p11.2-deletion-associated mouse behaviors.
The results present a promising new treatment target for autism spectrum disorder (ASD) symptoms. “The road from discovery to clinical trials is long, but we’re excited by the possibility that our findings might one day improve the daily lives of people with autism,” said Baptiste Lacoste, PhD, senior scientist at The Ottawa Hospital and professor at the University of Ottawa.
Baptiste is senior author of the team’s published paper in Neuron (“Purinergic receptor activation rectifies autism-associated endothelial dysfunction”), in which they concluded “These findings suggest that P2Y2 receptor activation represents a promising strategy to rescue brain EC dysfunction and, in turn, improve autism-related behaviors in the 16p11.2 deletion ASD syndrome.”
Autism is a neurodevelopmental condition with widely varying characteristics. Some of the behavioral symptoms can make life more challenging. While many people with autism have found ways to manage these symptoms, no drug treatment exists.
Lacoste’s team previously discovered that blood vessels in the brain don’t work properly in mouse models with a 16p11.2 deletion, one of the most common genetic mutations seen in autism. They were the first to look at what was happening in the blood vessels of the brain. “Recent evidence in a 16p11.2 deletion mouse model of autism spectrum disorder (ASD) revealed brain endothelial abnormalities postnatally, but the endothelial alterations eliciting these changes remain unknown,” they wrote.
Through their newly reported work the researchers have now found that the problem began in the endothelial cells lining the blood vessels. These cells make sure blood quickly gets to the parts of the brain that are active. This responsive blood supply is needed for proper brain function.
However, the endothelial cells in the 16p11.2 deletion mice don’t respond quickly enough. This happens early in brain development and causes behavioral symptoms later in life, including hyperactivity, repetitive movements, and motor learning impairment.
Headed by former PhD student, Julie Ouellette, PhD, the research team looked at what was wrong with these endothelial cells and whether it could be fixed. They discovered that the cells had half the normal level of ATP. “We demonstrate that 16p11.2 deletion induced EC dysfunction is caused by a bioenergetic failure with reduced intracellular ATP,” they explained. While ATP is usually considered an energy molecule, in this case the cell was missing its target, called a P2Y2 receptor, on its surface. “The identified energetic failure was restricted to ECs, emphasizing these cells as key contributors to ASD pathophysiology,” the investigators added.
By activating this P2Y2 receptor, the researchers were able to restore the cell’s function, increase blood flow in the brain, and reverse the behavioral symptoms in adult mice. This was achieved using a drug known to activate P2Y2 and which is currently approved for humans in Japan and South Korea to treat dry eye syndrome.
“Activation of ATP signaling via endothelial P2-class purinergic receptors, specifically P2Y2, rescued EC dysfunction, restoring angiogenic capacity in vitro, endothelium-dependent cerebrovascular reactivity ex vivo, and activity-dependent cerebral blood flow (CBF) in vivo,” the team stated. “A selective pharmacological P2Y2 agonist also rescued adult 16p11.2-deficient behavioral phenotypes.”
Lacoste said, “It’s as if these cells are asleep, and now we can wake them up. And we may only need to treat them once to wake them up permanently. We will test that further, but it’s an encouraging feature for a future treatment.”
In their paper the authors concluded, “Taken together, this study demonstrates that metabolic reprogramming of brain ECs via purinergic receptor engagement represents a promising therapeutic avenue for ASD.” They also point out that the study only looked at adult mice. This means targeting P2Y2 could reverse behavioral symptoms that were already well established.
Next, the team plans to treat mice earlier in life to see if early treatment has additional benefits. The team has also filed a patent application for using P2Y2 activation in the blood vessels to treat autism symptoms. They are interested in exploring drug development with the aim of eventual clinical trials.
The post Autism Target Discovered in Endothelial Cells in Genetic Deletion Mouse Model appeared first on GEN – Genetic Engineering and Biotechnology News.
Background: Hope and confidence support personal recovery by helping individuals with mental illness to rediscover meaning, enhance social connections, and build fulfilling lives. Digital recovery narrative interventions may help stimulate these recovery processes by providing access to hopeful lived-experience stories. Objective: This pilot feasibility randomized controlled trial evaluated the feasibility, acceptability, and exploratory outcome signals of STORY MINE, a novel digital intervention based on hopeful recovery narratives, to support personal recovery among adult service users receiving specialized mental health care at a Dutch psychiatric institute. Methods: Adult service users receiving outpatient specialized mental health care were recruited through clinician referral and self-enrollment. Participants (N=28) were randomized (1:1) to either intervention (STORY MINE access for 12 wk alongside care as usual) or control (care as usual only). Feasibility and acceptability were assessed via platform usage data, evaluation questions embedded within the intervention, and postintervention feedback. Quantitative outcomes were assessed at baseline and postintervention using validated self-report questionnaires on mental health confidence, hope, self-stigma, and personal recovery. Descriptive statistics and exploratory effect sizes with 95% CIs were calculated. Qualitative feedback was analyzed thematically to explore user experiences and perceived impact. Results: All participants (N=28) completed self-report questionnaires, while 13 of 14 participants in the intervention group provided evaluation feedback. Feasibility and acceptability were rated positively (mean 7.7, SD 2.52). Engagement was low, with a mean of 2.77 (SD 1.49) active login days per participant over 12 weeks, with some participants reporting minor technical barriers to use. Participants reported mixed perceived recognition (identification with narratives) and relevance (perceived applicability), but qualitative findings indicated perceived benefits including increased meaning-making, inspiration, and connectedness to recovery narratives. Some reported STORY MINE contributed to their recovery process (eg, narratives provided practical tips and evoked meaning-making and more positive self-evaluation). However, mixed emotional responses were reported; one participant reported narratives triggered distressing memories. Exploratory analyses showed small negative effect sizes for mental health confidence (Cohen =−0.32, 95% CI −1.07 to 0.42), hope (Cohen =−0.45, 95% CI −1.20 to 0.30), and self-stigma (Cohen =−0.33, 95% CI −1.08 to 0.42), and a medium negative effect size for personal recovery (Cohen =−0.53, 95% CI −1.28 to 0.22). These effect estimates decreased after excluding 2 participants experiencing an acute mental health crisis during the study period. Conclusions: STORY MINE appears feasible and acceptable as a supplement to specialized mental health care, although low engagement and mixed emotional responses highlight the need for refinement, particularly to improve user engagement, emotional safety, perceived relevance, and accessibility of the intervention. Findings should be interpreted cautiously given the pilot design and small sample size. A fully powered randomized controlled trial is warranted to evaluate effectiveness.
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By Kjersti and Jayden Helberg
Jayden’s Story
It has been almost 7 years since I was diagnosed with OCD. When I was 7 years old I started having a lot of fears about getting the stomach flu. Because of this, my stomach would hurt at night. I would have a hard time falling asleep for fear of waking up with throw up all around me. Over time, because of the worry, my stomach also hurt all day long. This made it so I couldn’t focus or have fun a lot of the time, with the constant stomachache and worry. My parents knew my stomach was always hurting, and I remember my mom taking me to a few doctors and doing tests to try to find out why. I was also avoiding my siblings because I thought they would get me sick too. I started asking questions all the time about that and anything else that worried me, it felt like hundreds of questions every day. I didn’t know my parents were doing a lot of things behind the scenes to try to find out what was going on.
One day, my parents sat down with me and told me they thought they knew why I was having so many worries. They showed me a video about what OCD was to help me understand. We compiled a list together of all the things I was worried about. The list was long and included: the stomach flu, poison, doing things wrong, being a bad person etc. I was relieved that they thought we knew why I was worrying so much.
So, my parents found me a therapist. Her name was Dr. Michelle Witkin. She taught me about OCD. She taught me that I could get better. She showed me strategies to fight my OCD, like: delaying compulsions or doing the opposite. Then she taught me how to do exposure therapy. After working on some of my less intense fears, we tackled the stomach flu. As I did exposure therapy, I learned that I could be uncomfortable, ignore the urge to do my compulsions, and still do the things I wanted, like sleeping and playing with my siblings! The biggest exposure we did was exposing me to fake throw-up that I thought was real. We had it all around the house so I would see it all day long. I hated it at first because I thought it would make me sick, but over time I got more comfortable with it being around though it was (and still is) a bit gross. My final exposure was sticking my hand in a bowl of the throw up and getting my cars out. I remember that was really hard and I was scared but I also remember that I was so proud of myself! I wasn’t afraid anymore!
Being a kid with OCD was hard. Before I was diagnosed, I was scared a lot because I had so many intrusive thoughts throughout the day. Now, 7 years later, I am a teenager with OCD and fortunately it isn’t a very big part of my life. It is mostly little things that come up and when they do, I can just use the tools I have learned right away so I don’t get stuck. It is easy to recognize my OCD now. I have also learned that I can do mostly anything now and not a lot stops me! If I could do all those hard things to recover from OCD, then I can do anything! My favorite phrase my therapist taught me was, “You can’t be brave without being scared first.” I know I can get past hard things. I’ve learned I can “do it scared.” I want to help people know what OCD really is, and that getting help as a kid changed my life for the better. I hope that everyone who reads this and is fighting OCD will know that you can do it and should never give up even when it is hard.
Kjersti’s Story
My son was 7 years old. Every day and night he had stomach pain. He would stay up for hours and could not fall asleep because his stomach was hurting so badly. We went to the pediatrician, we saw a gastroenterologist, we paid for test after test. They all came back normal. Nothing could explain his stomach pain. The pain continued and we continued to be at a loss. Then, he started asking us if he was going to throw up, asking if something was poison, asking if a song he had in his head was bad, asking if what he said was okay, if what he thought was okay, if what he did was okay, asking us if he was bad. Again, and again the questions came and nothing I said seemed to give him any lasting comfort. He was avoiding his siblings at any sign of stomach upset, for fear they would get him sick. Our carefree little boy was suddenly filled with endless worry. Long days of reassurance seeking (a term we would soon learn) were followed by sleepless nights.
Our pediatrician suggested he should see someone for anxiety. I called a local therapist and told him what was happening. The therapist said to me something I never thought I would hear, “I think your son has OCD. You should really try to find an OCD specialist to help you.” I didn’t understand. Isn’t OCD a cleanliness thing? Hand washing? Organizing stuff? He doesn’t do any of that. So, we researched it and learned we had been very wrong about what we thought OCD was. It was so much more than we realized and sounded like just what our son was struggling with. We signed up for Natasha Daniels course to learn all that we could. We learned words that week like reassurance seeking, accommodation, compulsion. We learned that OCD has many subtypes. We learned that there was hope for recovery. Hope for our son to not be stuck and held captive by his worries anymore. Finally we had hope.
We sat down with our son to tell him we thought he had OCD. He seemed to understand and was willing to start trying some things we had learned. Once we started seeing a trained OCD therapist (Michelle Witkin) that was when everything changed. She trained us in how to reduce family accommodation and respond to his OCD in a different way. She helped us learn the language to be loving but not reassuring. She taught him how to reduce compulsions and fight back by using ERP and other strategies. She gave us a toolbox that we still use today and will continue to use throughout our lives. OCD Treatment was invaluable and gave our son his childhood back. It still breaks my heart that it took months to find out what my son was going through. Months that could have been used for the correct treatment, if only our pediatrician knew what OCD was. If only WE knew what OCD was. It is not lost on me that we were the lucky ones because it only took months. Unfortunately, for so many, it can take years upon years of incorrect treatment before receiving a diagnosis. For some, they never receive it.
It is my hope that every child who is suffering from OCD can find access to the correct treatment. That they can learn to apply the tools to fight OCD and reclaim their childhoods, and in turn their lives. To live the life they want on their own terms and not on the terms of their OCD.
While every experience with OCD is different, far too many kids and families face the same barriers to getting answers and effective treatment. See what new IOCDF findings reveal about pediatric OCD care—and what we can do to change it—in Losing Childhood to America’s OCD Care Crisis.
The post We Can Do Hard Things – A Mother and Son’s OCD Journey appeared first on International OCD Foundation.
By Jack
When I was in elementary and middle school, my mind was ravaged by constant OCD intrusive thoughts and obsessions, mainly about harming myself and others and whether I would act on these violent thoughts. These thoughts plagued me to the point where I would act out and cause chaos in class to quiet the chaos in my head for a moment.
OCD often attacks what you love the most and I loved being in school! That’s why my OCD was targeting that environment. All my teachers really wanted to help me but they misunderstood the disorder and lacked basic knowledge to help me, let alone identify what was happening to me. They believed that removing me from class and not allowing me to be triggered by things like knives in art class and dark topics in the classroom would be the best way to help me.
Before receiving the correct diagnosis, my family had little understanding of the disorder. My parents, my teachers and I were confused on how to help me and keep me in the classroom. After my diagnosis, my mom immediately took it upon herself to spread awareness, including sharing specific Exposure Response Prevention tactics (ERP, the gold standard treatment for OCD) with my teachers and beyond. My teachers and administrators were on the same page as my parents and my care team. Whether it was my science teacher giving me a safe space to cool down, or my art teacher actively engaging in exposure situations that were rooted in ERP, by gently pushing me to use the clay knives required to make a clay bird (which my mom still treasures). I finally felt that I had support in school, retraining my brain and responding differently to my many obsessions.
OCD can show itself in many forms and many students, like me, suffer in silence without proper support. I would love for school professionals to have specific knowledge of OCD, especially the less understood, Harm OCD, like I have, and be able to communicate and help plan helpful accommodations, if needed, for students with OCD to keep them in school.
OCD is incredibly cruel and I soon learned that giving up, and not going to school would not help me; but with the right care team, pushing back on OCD and exposure to my debilitating obsessions was the only way to fight. Along with the right treatment plan, the support and understanding of my teachers and family in tandem with my own struggle and perseverance allowed me to graduate and live my life with relief. My wish is that everyone could understand all the ways that kids suffer from this disorder, and be able to effectively help with the right tools and compassion, which is what all teachers strive for.
While every experience with OCD is unique, far too many kids and families face the same barriers to getting answers and effective treatment. See what new IOCDF findings reveal about pediatric OCD care—and what we can do to change it—in Losing Childhood to America’s OCD Care Crisis.
The post Quieting the Chaos — Living with OCD appeared first on International OCD Foundation.
By Austin Kang
Sometimes I think back to the waiting room. I was 13. My older brother was 17.
I remember the sharp smell of lemon disinfectant and the muffled voices behind the therapist’s office door. My brother would disappear behind that door while I sat across the room pretending to do homework, glancing at the clock every few minutes. He was my best friend and the person I admired most, yet I had no idea how to help him. I only knew that something had changed.
When I was in middle school, my brother’s Obsessive-Compulsive Disorder became severe. His perfectionism consumed his life. Homework that should’ve taken thirty minutes stretched into the night. He rewrote sentences until the paper tore, turned short-answer assignments into numerous pages, and convinced himself nothing was ever good enough to submit. Eventually, the missing assignments piled up. The brother I had always known as brilliant began struggling with school and slipped into depression.
Our family’s life revolved around OCD.
I remember one afternoon when my mom was driving me to basketball practice. Her phone buzzed. My dad had just discovered another long list of missing assignments, and without saying a word, my mom made a U-turn. Basketball no longer mattered. Like so many other days, everything stopped because my brother needed help. I never complained because I knew he needed my parents more than I did.
That became my role: the “easy child.”
People praised me for being mature and understanding, but what they saw as maturity was really silence. I stopped bringing up my own problems because they felt insignificant compared to what my brother was enduring. I declined FaceTime calls with friends because I worried they might hear yelling in the background or notice something different about my family. During dinners, I watched my food grow cold while we waited for my brother to finish one more compulsion.
Little by little, I learned to make myself smaller so I wouldn’t add more stress to my parents’
plate.
No therapist ever asked how I was doing. Each appointment focused, understandably, on helping my brother recover, but no one stopped to ask what it felt like watching someone I love go through trauma while I quietly disappeared.
Looking back, I don’t wish less attention had been given to my brother. He deserved every bit of it. I simply wish someone had recognized that OCD was affecting more than one child.
Today, I know my middle school self wasn’t alone, even if it felt like it. Through founding Behind the Scenes, North America’s first peer-led support community for OCD siblings, and meeting other siblings, I’ve learned that many of us carry the same invisible burden: loving our brother or sister deeply while quietly convincing ourselves that our own pain didn’t matter. I hope more families and clinicians begin asking siblings a simple question that I rarely heard: “How are you doing?” Being seen is the beginning of healing.
While every experience with OCD is different, far too many kids and families face the same barriers to getting answers and effective treatment. See what new IOCDF findings reveal about pediatric OCD care—and what we can do to change it—in Losing Childhood to America’s OCD Care Crisis.
The post Waiting Room – A Sibling’s Story appeared first on International OCD Foundation.
