Insight
Finding each other: Peer recognition as a clinical intervention in chronic illness
By Morgan Rose, chief science officer, Ema and Erlyn Macarayan, PhD, vice president, data science at PatientsLikeMe
May is Mental Health Awareness Month.
Most of the conversation this month treats depression and anxiety as standalone conditions, things people experience independently of their physical health.
For the patients we serve through the PLM platform, that framing leaves out something important.
Mental health in chronic illness functions as an overlay on a condition that does not end. It runs alongside the disease for as long as the disease lasts.
We have been analysing anonymised, aggregated conversational data from Ema, our agentic AI for patient support, and PLM users.
One pattern stands out across the dataset: what people are reaching for when they reach out.
The single most common behavior in the data, appearing in nearly 500 unique conversations, is the search for someone with the same diagnosis.
“Can you connect me with an MS group?” “Are there other people here with fibromyalgia?” “Does anyone in my city have what I have?” “I am looking for people like me.”
That request has a name in the research literature. It is peer support, and in the context of chronic illness, it functions as a mental health intervention.
The clinical case for peer recognition
The literature on peer support in chronic illness is well-developed.
Connection with others who share your diagnosis is associated with reduced depression severity, better treatment adherence, and a measurable drop in perceived isolation.
The mechanism behind those outcomes is recognition.
Someone else has lived inside the same symptom, navigated the same medication side effect, sat with the same diagnostic delay, and that recognition closes a specific gap that conventional therapy alone often cannot reach.
Therapists matter.
So do the people who know what an MS fatigue day actually feels like, what a fibro flare does to a person’s sense of self, what it is to be 34 and on a chemo regimen your friends cannot picture.
In clinical terms, that community is part of the care infrastructure for chronic illness, alongside medications, specialists, and labs.
PLM was built around this insight.
What Ema adds is a conversational layer that can route someone toward that community at the moment of need, before they have finished learning a platform.
“The PatientsLikeMe community has made living with MS manageable and in some bizarre way, even enjoyable sometimes because I’ve garnered these friendships and I am no longer afraid because all these other people are doing it with me.”
- PLM member living with MS
Why the burden is hard to address inside a clinical visit
There is a structural reason the mental health weight of chronic illness routinely goes undertreated. The visit is consumed by the physical condition.
The provider’s task list is long, the slot is short, and there is rarely a person in the room whose role is to ask how the patient is actually doing.
Some of that weight is also biological.
Depression in MS, for example, is roughly twice as common as in the general population, and is frequently undiagnosed because fatigue, cognitive change, and social withdrawal can be read as MS symptoms.
Similar overlap exists across cancer, autoimmune disease, and chronic pain.
Two systems run in parallel, shaped in part by the same underlying biology, yet routinely treated as separate.
That gap is where unguarded conversation tends to appear, and where the PLM data gets revealing.
The disclosure pattern
When mental health is mentioned in the PLM dataset, it rarely appears at the start of a conversation.
It surfaces sideways, after trust has been established by a clinical or logistical question.
One thread opens with questions about gabapentin and how PatientsLikeMe works.
A few exchanges later, the same user asks whether Ema has crisis resources. The conversation moves to feeling anxious, then depressed, then “I don’t know how I feel.”
Another thread spends several turns on MS management, medication questions, and which groups exist on PLM. Then the user writes, “My MS is making me feel overwhelmed and like everything is just too much. I’m not sure how to go on.”
Ema’s response in moments like that one matters.
She receives what was actually said, validates its weight, offers concrete steps for support, and connects the user back to the PLM community for the kind of isolation a clinical encounter cannot address.
The conversation pivoted because the user needed it to, and Ema followed.
That arc, the one that begins with a logistical question and ends in a disclosure about feeling unable to go on, is one of the clearest pictures we have of what the untreated chronic illness mental health burden looks like from the inside.
Crisis in the middle of an ordinary conversation
In 25 separate conversations in the PLM dataset, the mental health weight rose to the level of crisis. Users disclosed suicidal ideation directly.
One wrote, “I’m thinking of suicide.” Another asked what to do “if having a crisis and feeling suicidal.”
These conversations were happening on a patient platform, amid otherwise routine exchanges about a chronic condition.
The disclosures came in mid-thread, with no triage process to queue them.
Ema’s response was immediate and grounded. Hotline numbers, emergency services, an acknowledgment of the seriousness, and a reminder that the person is not alone.
The infrastructure to capture a moment like that at any hour, with no wait time, is something the conventional care system struggles to provide at scale. People are reaching for something in those moments.
Ema is built to be the thing they reach toward, and to hand them off to the human resources they need next.
What the data points toward
Pulling the patterns together, a coherent picture emerges.
People living with chronic illness carry a real and persistent mental health burden, and the burden tends to surface in the same conversations where they are managing medications, asking about treatment, and looking for others who share their diagnosis.
The most common request across the dataset is the request for community.
For PLM, that is the platform’s foundational thesis turning up in every dataset.
The platform was built on the premise that finding others with your condition is therapeutic. The conversation data confirms this, with patients explicitly asking for the connection.
For Ema, the implication is a design constraint.
We need to recognise when a question about gabapentin is an entry point into a question about feeling overwhelmed.
The route to peer recognition has to be as accessible as the route to clinical information.
And a moment of disclosure, whenever it arrives, has to land somewhere it can be received and responded to with care.
For Mental Health Awareness Month, the implication for chronic illness patients is direct.
Mental health in this population does not require a separate appointment that most patients will not make. It requires the people who already share the diagnosis to be part of the conversation, and it requires the platform to make that connection fast.
That is the work. It is what the data is asking us to build.
About Morgan Rose
Morgan Rose is chief science officer at Ema, an AI platform for patient health engagement.
Ema partners with health platforms and life sciences organisations to deliver clinically grounded, emotionally intelligent AI support where patients already are.
Learn more about Ema at emahealth.ai
Ki-67, a protein used to measure tumour growth, may also help prevent chromosome errors that drive cancer, a study suggests.
The findings could change how scientists view Ki-67, a marker commonly used in breast cancer and other tumours to assess how quickly cancer cells are growing.
Researchers found the protein may help preserve genome stability by maintaining the structural integrity of centromeres, key parts of chromosomes that help ensure DNA is shared correctly during cell division.
The research was led by professor Paola Vagnarelli at Brunel University of London in collaboration with scientists at the University of Edinburgh and the Technical University of Berlin.
Professor Vagnarelli said: “Doctors already measure Ki-67 to see how aggressive a cancer might be. But our results suggest it is actually helping maintain genome stability.
“That means it may be more than a marker. It could potentially also be a therapeutic target.”
The study examined three proteins that attach to chromosomes during cell division and help rebuild the molecular system that tells each new cell what kind of cell it is.
Every human cell carries identical DNA. What makes a liver cell different from a brain cell is which genes are switched on and which are kept inactive.
When a cell divides, that entire system of switches must be rebuilt. The three proteins involved in this process were Ki-67, Repo-Man and PNUTS.
Vagnarelli’s team developed a method that individually removes each protein from a living cell at the precise point of division. Older techniques could not isolate that moment cleanly.
They found that cells rely on all three proteins to reset themselves after division, but each failed in a different way when removed.
Without PNUTS, gene activity spiralled out of control and thousands of genes switched on at once.
Without Repo-Man, cells escaped safety checkpoints that usually stop damaged or abnormal cells from continuing to divide.
“What we didn’t expect was how clean the separation was,” said Vagnarelli.
Each protein fails in its own specific way. There is no redundancy, no safety net. Which means there are three separate points at which this process can go wrong.
“When the system breaks down, cells can emerge with the wrong number of chromosomes. That condition, called aneuploidy, is seen in disorders such as Down syndrome and in many cancers.
“We also found that these chromosome errors can trigger inflammatory signals inside the cell.”
Aneuploidy means a cell has too many or too few chromosomes, which can disrupt normal growth and function.
Inflammatory signals are chemical messages that can make a cell behave as if it is responding to injury or infection.
“These cells behave almost as if they are under attack,” said Vagnarelli.
“The immune response switches on because the genome is unstable.
“That link between chromosome imbalance and inflammation could help explain patterns we see in several diseases.”
The researchers said the findings may help cancer scientists better understand how chromosome instability, loss of gene regulation and cells dividing before they are ready contribute to tumour growth.
They said understanding the normal machinery that prevents these errors may help researchers find ways to push cancer cells into making mistakes they cannot survive.
“We now have a clearer map of the machinery that resets the cell after division,” said Vagnarelli.
“That knowledge gives us a starting point for thinking about new therapeutic approaches.”
After more than a decade of campaigning, doctors around the world have agreed to rename polycystic ovary syndrome (PCOS).
It is hoped the new name, polyendocrine metabolic ovarian syndrome, or PMOS, will help end the misconception that the condition is all about cysts, which campaigners say has contributed to missed diagnoses and inadequate treatment.
The condition affects one in eight women, or 3.1m women and girls in the UK, and is linked to hormone fluctuations that can affect weight, mental health, skin and the reproductive system.
The renaming was spearheaded by UK patient charity Verity alongside Professor Helena Teede, director of Melbourne’s Monash Centre for Health Research and Implementation.
It followed 14 years of consultation with clinicians and patients around the world.
The new name was published in a consensus statement on May 12 and announced at the European Congress of Endocrinology in Prague.
The paper states that PCOS should now be referred to as PMOS.
“This is a landmark moment that will lead to desperately-needed worldwide advancements in clinical practice and research,” said Professor Teede.
“It was heart-breaking to see the delayed diagnosis, limited awareness and inadequate care afforded those affected by this neglected condition.”
When doctors first named PCOS in 1935, they thought it was mainly caused by physical changes to the ovaries.
Decades of research have since changed that understanding, with clinicians now agreeing the condition is far more complex.
“What we now know is that there is actually no increase in abnormal cysts on the ovary and the diverse features of the condition were often unappreciated,” Professor Teede added.
“A name change was the next critical step towards recognition and improvement in the long term impacts of this condition.”
The exact cause of the condition is still unknown, though it is thought to be linked to abnormal hormone levels and is associated with insulin resistance and raised levels of testosterone and luteinising hormone.
Insulin resistance means the body does not respond properly to insulin, the hormone that helps control blood sugar. Luteinising hormone helps regulate ovulation.
Common symptoms listed by the NHS include irregular periods or no periods at all, difficulty getting pregnant, excessive hair growth, weight gain, thinning hair, oily skin and acne.
Campaigners have acknowledged that the name change could cause temporary confusion.
“Despite decades of tireless advocacy to improve awareness, we recognised that the risk of change would be worth the reward,” said Rachel Morman, chairwoman of Verity.
“This shift will reframe the conversation and demand that it is taken as seriously as the long-term, complex health condition it is.”
It is also unclear if, or when, the NHS will change the language it uses.
An NHS England spokesperson said: “We routinely review and update content on the NHS website to ensure it reflects the latest clinical advice and will carefully consider these recommendations.
“The NHS will also continue our work to improve women’s healthcare, including for this important group, which involves giving women more choice over their care, bringing down waiting times, and delivering more care in communities.”
News
The RESIL-Card tool launches across Europe to strengthen cardiovascular care preparedness against crises
By Women As One
Women As One is proud to have contributed to the development of the RESIL-Card tool as an active Advisory Board member, ensuring that gender equity and the perspectives of women cardiologists were embedded from the outset.
Through strategic input on the project’s design, formal support of its EU4Health funding application, and ongoing participation in advisory activities, Women As One has helped shape both the direction and implementation of this initiative.
By amplifying awareness, facilitating engagement from our global community, and advocating for inclusive representation, we have worked to ensure that RESIL-Card reflects the diverse realities of cardiovascular care and supports more equitable, resilient health systems in times of crisis. Read more about our involvement here.
On the European Day for Prevention of Cardiovascular Risk (March 14), the RESIL-Card consortium proudly announces the official launch of the RESIL-Card tool, a free online resource designed to help hospital cardiovascular professionals and other stakeholders assess and strengthen the resilience of their care pathways — ensuring that lifesaving care remains accessible even during times of crisis.
Available now at https://www.wecareabouthearts.org/resil-card/online-tool/, the RESIL-Card tool offers a structured self-assessment framework for evaluating the preparedness of cardiovascular services and identifying concrete actions to maintain continuity of care when health systems face disruption.
“Cardiovascular care must remain uninterrupted regardless of the challenges health systems face,” said Professor William Wijns, Research Professor in Interventional Cardiology, University of Galway, Ireland, and We CARE – RESIL-Card Coordinator.
“The RESIL-Card tool provides healthcare teams with a practical way to assess preparedness, identify improvement opportunities, and ultimately ensure that patients continue to receive lifesaving care when it matters most.”
Why the RESIL-Card tool was developed
Cardiovascular diseases remain the leading cause of death in Europe, making the continuity and resilience of care pathways a public health priority.
Despite advances in diagnosis and treatment, recent crises – from pandemics to geopolitical instability – have exposed the vulnerability of healthcare systems.
In today’s increasingly uncertain health landscape and global environment, proactive preparedness is no longer optional – it is essential.
The RESIL-Card tool was developed as part of an EU4Health-funded initiative to support organisations providing lifesaving cardiovascular care in strengthening their preparedness, improving coordination, and safeguarding patient outcomes in times of disruption.
The initiative focuses on practical resilience strategies to help health systems anticipate challenges rather than simply react to them.
“Healthcare systems today operate in an increasingly complex and unpredictable environment,” said Ariadna Sanz, Health Policy Manager at the Catalan Health Service (CatSalut).
“Tools like RESIL-Card help shift the focus from responding to crises toward proactively building strong, adaptable cardiovascular care pathways that protect patients over the long term.”
A collaborative and evidence-based methodology
The RESIL-Card tool is grounded in a robust, multidisciplinary development process involving cardiovascular experts, healthcare professionals, public health specialists, patient organisations, and policy stakeholders from across Europe.
Its development combined comprehensive literature reviews and analysis of existing preparedness frameworks with extensive stakeholder consultations and co-creation workshops. Real-world insights from healthcare providers and patient representatives were integrated throughout the process to ensure the tool reflects the practical realities of cardiovascular care delivery. The methodology also included iterative testing and validation phases, allowing the consortium to refine the tool and ensure it is both scientifically rigorous and practical for everyday use.
“From the outset, RESIL-Card was co-created with clinicians, patient representatives, and health system experts to ensure it reflects real-world practice,” said Professor Niek Klazinga, Em. Professor of Social Medicine, Amsterdam University Medical Centre / University of Amsterdam.
“The result is a tool that combines scientific rigour with practical usability, enabling healthcare teams to translate resilience concepts into concrete action.”
What the RESIL-Card tool is and how it works
The RESIL-Card tool is a practical online self-assessment instrument designed for use by a multistakeholder resilience team led by cardiovascular care providers.
Through a structured four-step process, including a questionnaire and guided analysis, users assess the preparedness and resilience of their cardiovascular care pathways and gain a clear understanding of how well their services can maintain care continuity during periods of disruption.
The assessment process helps teams identify existing strengths as well as potential gaps in service delivery.
Based on the responses provided, the tool offers tailored recommendations and examples of best practices to support improvement.
These insights can then inform strategic planning, helping organisations prioritise actions that reinforce care continuity, strengthen patient safety, and optimise the long-term sustainability of cardiovascular services.
Benefits for Key Stakeholders
For healthcare professionals and organisations delivering cardiovascular care, the RESIL-Card tool provides a structured way to strengthen preparedness and crisis-response capacity.
By helping teams assess their existing systems and identify areas for improvement, the tool supports better coordination across services and clinical disciplines.
It also facilitates evidence-based planning and quality improvement initiatives, enabling healthcare organisations to enhance their operational resilience while maintaining efficient and manageable care processes.
“By promoting awareness about strengths and limitations of each system, the RESIL-Card tool will help physicians to understand where improvements are needed and strengthen coordination and planning to face crises,” said Doctor Alfredo Marchese, Chief of Interventional Cardiology Department at Santa Maria Hospital, Bari, Italy and President of the Italian Society of Interventional Cardiology (GISE).
For patients and patient organisations, the RESIL-Card tool contributes to improving the reliability and continuity of essential cardiovascular care.
By encouraging healthcare providers to proactively address vulnerabilities in care pathways, the tool helps promote uninterrupted access to diagnosis, treatment, and follow-up services.
It also supports a more patient-centred and equitable approach to care delivery, encouraging collaboration and transparency in preparedness planning.
Ultimately, these improvements can contribute to better health outcomes and increased safety for people living with cardiovascular disease.
“For people living with cardiovascular disease, continuity of care is not optional — it is essential,” said Teresa Glynn, Senior Executive Strategy & Partnerships at Global Heart Hub.
“By helping healthcare providers strengthen preparedness, RESIL-Card supports more reliable and equitable access to treatment and greater confidence for patients and their families.”
At the European level, the RESIL-Card initiative contributes to a shared effort to strengthen the resilience of health systems.
By providing a common framework for assessing and improving preparedness, the tool encourages cross-border learning and facilitates the exchange of best practices among healthcare providers and policymakers.
It also aligns closely with European Union priorities on health system preparedness, crisis response, and sustainability.
By helping healthcare organisations identify vulnerabilities and implement practical resilience measures, the RESIL-Card tool can support efforts to reduce inequalities in access to high-quality cardiovascular care across EU Member States.
“Strengthening the resilience of cardiovascular care is a shared European priority,” said Rachel Kenna, Ireland’s Chief Nursing Officer at the Department of Health.
“While the RESIL-Card tool has not yet been tested in an Irish setting we look forward to seeing how it can support the development of more sustainable and prepared healthcare systems.”
Call to Action
Cardiovascular care providers and other healthcare professionals are encouraged to explore the RESIL-Card tool at https://www.wecareabouthearts.org/resil-card/online-tool/.
By using it to assess their cardiovascular care pathways, they will identify areas where resilience can be strengthened and ensure that essential services remain accessible during times of disruption.
Patient organisations also play an important role in this effort. By engaging with healthcare providers and policymakers, they can help promote the use of the tool and ensure that patient perspectives are meaningfully incorporated into preparedness and response planning.
Policymakers and health authorities are invited to support the adoption of the RESIL-Card tool within regional, national and European strategies aimed at strengthening healthcare system resilience.
Integrating the tool into policy frameworks can help safeguard access to essential cardiovascular services and enhance the ability of health systems to respond effectively to future challenges.
Learn more about Women As One at womenasone.org
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