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
Insight
Women urged to be wary of menopause misinformation on social media

Women are being urged to seek evidence-based advice and avoid menopause misinformation shared on social media.
A seminar co-hosted by the World Health Organization (WHO) mainly examined what is known about the cognitive effects of menopause and current research in the field worldwide.
Dr Nicole Jaff, a South African academic and certified menopause practitioner, said research into menopause and its effects was now at a peak.
She said: “There’s a lot of information out there.
“But I would say please look for the evidence-based information, not for the influencers and the misinformation, but those who are giving guidelines, who are giving information.”
Jaff highlighted research into cognitive changes during menopause and how some women experience brain fog, a term for difficulties with memory, concentration and clear thinking.
She said: “I’m very excited about the non-hormonal treatments that are now available, especially for women who could never take hormone therapy because of breast cancers and various cancers, who can now take it.
“I’m extremely excited about people who are standing up for evidence-based medicine, for science, who are actually fighting back against a lot of the social media and influencers who are not giving evidence-based information and making life very difficult for women because they think they should be forever young or buying this or buying that.”
Jaff advised women and healthcare workers to read new guidelines recently issued by the International Menopause Society. They are available free to download from its website.
The seminar also heard from Professor Aimee Spector, professor of clinical psychology of ageing at University College London.
She raised similar concerns about misinformation, particularly claims linking hormone replacement therapy, known as HRT, to dementia. Some claims suggest HRT reduces dementia risk, while others suggest it increases the risk.
Spector said: “I think there’s also lots of misinformation.
“And I think that there’s huge variations in how even professionals and doctors interpret this information.”
She was part of an international research team commissioned by the WHO last year to assess published studies on the issue.
The institutions involved also included the Global Brain Health Institute at Trinity College Dublin.
Spector said: “The first thing to say is that the quality of evidence was very low.
“Nine out of the 10 studies we looked at were observational, which means that you’re observing patterns over time. But you don’t necessarily know whether that’s due to the hormone therapy or not.
“Our overall recommendation was that there’s insufficient evidence for menopause hormone therapy in terms of either increasing or reducing the risk of dementia. In other words, we don’t know either way.”
Spector said women should therefore decide whether to use HRT to treat menopause symptoms rather than based on concerns about dementia.
She said: “It’s recommended for menopause symptoms, but it’s not recommended to reduce dementia. And I think a lot of people are saying that.”
The Menopause on the Brain webinar was part of an ongoing series hosted by the WHO and other global health agencies.
Insight
Endometriosis musical set for Edinburgh Fringe stage

An endometriosis musical by two US writers will debut at the Edinburgh Festival Fringe in August.
“Endometriosis: The Musical” follows Jane, a woman trying to discover why she is living with chronic pain.
Maria Bartholdi and Kristin Stowell first developed the production for the 2022 Minnesota Fringe Festival.
The full show premiered at Theater in the Round in Minneapolis in 2025.
Stowell said the play drew on personal experience, although neither writer realised it at the time.
“So it’s like my goal to let women see themselves in this who are dealing with this and have a question they can bring back to their doctor,” she said.
“Like, could it be endometriosis?”
Bartholdi said she did not realise she might have the condition herself until after the play premiered.
“This show helped diagnose me, which I think is just one of the miraculous things that we hope this the show does for other people as well,” Bartholdi said.
Dr Wendy VanBuren, a radiologist at Mayo Clinic in Rochester, said she was a fan of the musical and its role in raising awareness of a common but underdiagnosed disease.
“Cells that are similar to but not identical to the cells that comprise the lining of the uterus, the inside of the uterus, are located outside the uterus,” said VanBuren.
“When they’re outside the uterus, there isn’t the right environment to deal with that. So basically, what you get is bleeding, and then you get inflammation.”
Roughly one in seven women live with the disease, and receiving a diagnosis can take nearly a decade.
Insight
Johnson & Johnson offers to pay US$5.5bn to settle talc cancer lawsuits

Johnson & Johnson has offered an estimated US$5.5bn settlement covering about 76,000 claims that its talc products caused ovarian cancer.
The proposed agreement could end a contentious legal dispute over the company’s baby powder and other talc-based products that has lasted around a decade.
Johnson & Johnson said the settlement covers claims consolidated in a federal court in New Jersey and related cases in state court.
The claims represent nearly all the remaining talc cases against the US multinational, according to the company.
Johnson & Johnson has previously settled most claims alleging that its talc contained asbestos and caused mesothelioma.
Mesothelioma is a rare cancer affecting the lining of organs, most commonly the lungs, and is usually linked to asbestos exposure.
Law firms representing claimants confirmed the proposed deal, describing it as a good resolution after around 10 years of litigation.
The agreement must be accepted by 95 per cent of ovarian cancer claimants in state or federal court before it becomes final.
Erik Haas, vice-president of litigation at Johnson & Johnson, said the claims were “meritless” and that the company was willing to settle to bring the litigation to a close.
“While we are confident the company would have ultimately prevailed with further litigation, as it has in the vast majority of cases tried to date, this resolution allows the company to put this matter behind it and remain focused on its mission to develop medicines and devices that save lives,” Haas said.
The company expects to pay US$3bn in 2027, with further payments due in 2028.
The deal could be worth more, depending on how many people take part in the settlement.
Chris Seeger, a lawyer representing around 2,500 clients with talc claims who helped negotiate the agreement, said Johnson & Johnson could ultimately pay US$7bn or more.
The settlement assigns specific values to qualifying ovarian cancer claims but does not cap the company’s total payout.
“We got a fair settlement, and our clients are going to be happy with it,” Seeger said.
Johnson & Johnson reached the agreement after a series of court victories, including wins in individual trials and successful efforts to disqualify claimants’ lawyers from the litigation.
The company also secured court rulings against experts used by claimants to support their cases.
A federal judge last week questioned whether individual claimants could prove that talc had specifically caused their ovarian cancer.
Johnson & Johnson has consistently denied that its talc products caused cancer, maintaining that the products were safe and did not contain asbestos.
The company stopped selling talc-based baby powder in the US in 2020 and switched to a cornstarch-based product.
Litigation resumed in March 2025 after being paused for more than three years while Johnson & Johnson pursued a bankruptcy strategy known as the “Texas two step”.
The company filed three bankruptcies through a shell-company subsidiary in an attempt to settle the cases. Each bankruptcy was dismissed.
Before the bankruptcy attempts, Johnson & Johnson had a mixed record in talc trials.
These included a multibillion-dollar verdict for 22 women who said baby powder caused their ovarian cancer, alongside trials won by Johnson & Johnson and other verdicts later reduced on appeal.
Unlike the proposed bankruptcy settlements, the latest agreement applies only to existing claims and does not cover future lawsuits.
Seeger said excluding future claims made more money available for current claimants than the bankruptcy proposal and would allow all claims to be paid within 18 months rather than over more than a decade.
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