Connect with us

Insight

Finding each other: Peer recognition as a clinical intervention in chronic illness

Published

on

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 with birth trauma face 2.5x higher healthcare costs – study

Published

on

Women with childbirth-related PTSD had healthcare costs 2.5 times higher than women without PTSD from six to 12 months after birth, a report found.

The analysis estimated that early prevention of traumatic births and childbirth-related post-traumatic stress disorder (PTSD) could save the NHS around £26m each year.

Women with PTSD were also less likely to have returned to work by 12 months after giving birth, suggesting potential longer-term employment and economic effects.

The report from City St George’s, University of London was launched at an All-Party Parliamentary Group (APPG) on Birth Trauma event on 10 September 2026.

Researchers calculated the potential NHS savings using the number of births reported in NHS hospitals in 2024-25 and the UK prevalence of childbirth-related PTSD.

Around one in 20 women in the UK develop PTSD following childbirth, while recent research has shown that the condition remains underdiagnosed.

The findings draw on research that tracked more than 2,000 women in England and Scotland from pregnancy to two years after birth. Researchers assessed mental health, use of health services and employment outcomes.

The research included assessments of childbirth-related PTSD and PTSD arising from other traumatic experiences. It also included a separate Birth Trauma Association survey examining women’s experiences of birth trauma.

Between six and 12 months after birth, healthcare and support service costs for women with childbirth-related PTSD were 2.5 times those of women without PTSD.

Women with low or moderate symptoms, including those reporting one or two PTSD symptoms, also had higher healthcare service costs than women without PTSD.

Just over half, 53 per cent, of women with PTSD had returned to work by 12 months after giving birth, compared with 68 per cent of women without symptoms.

Women with PTSD were more likely to be referred for mental health support, but more than half received no referral.

Those whose PTSD followed a traumatic birth also had slightly higher healthcare costs than women whose PTSD resulted from other traumatic experiences.

The researchers called for routine PTSD assessment and treatment during pregnancy and after childbirth, alongside greater access to specialist perinatal mental health services.

They also recommended training healthcare staff in perinatal trauma, trauma-informed care and identifying women at risk of PTSD.

The report said further research was needed to establish whether screening, treatments and trauma-informed care pathways are effective and evidence based.

The work follows the APPG’s 2024 Birth Trauma Inquiry, which highlighted the effects of birth trauma on women and families and called for evidence on its wider public health and societal costs.

The report focused primarily on healthcare use and did not attempt to calculate all costs associated with birth trauma and postnatal PTSD, including wider employment, family and societal effects.

Continue Reading

Insight

UK reviews surrogacy firm over rejected insurance claims

Published

on

The UK government is reviewing a surrogacy firm after complaints that medical insurance claims involving surrogates in Mexico were rejected.

The Department of Health and Social Care (DHSC) is considering whether UK-based provider My Surrogacy Journey should remain listed on gov.uk as one of four domestic surrogacy agencies available to intended parents.

The review follows allegations concerning its Mexican sister company, where surrogates are based.

Health minister Diana Johnson said: “The department is looking into the allegations about My Surrogacy Journey.

“As part of that assessment, the department will consider whether it is appropriate for that company to remain on the gov.uk list of agencies.”

Emails sent by My Surrogacy Journey chief executive Michael Johnson-Ellis and seen by the Guardian suggest multiple surrogate women in Mexico had their insurance claims rejected.

The emails also suggest 300 couples using the company were moved to a new insurance provider because of the increased risk of claims being rejected.

Commercial surrogacy is banned in the UK, where only altruistic arrangements are permitted.

My Surrogacy Journey operates a not-for-profit UK branch alongside for-profit sister companies in Mexico and the US. All three companies have the same owners and chief executives.

The reported insurance issues relate to surrogacy arrangements in Mexico.

One couple told the Guardian they paid tens of thousands of pounds to cover medical costs after their surrogate had a hysterectomy during childbirth and an insurance claim was refused.

The Guardian said it understood that at least five sets of parents said they had to cover medical costs after insurance claims were rejected.

In an email to the couple whose surrogate underwent a hysterectomy, Johnson-Ellis wrote: “We have already told you that the insurance companies have been declining some of the claims and we are actively working with the broker to get this issue resolved but you should also consider that they may not be paid out and there is nothing we are able to do to change this …

“We appreciate this is not an insignificant sum but this genuinely is out of our control.”

Johnson-Ellis also said the company had switched insurance providers, writing: “We’re also managing this for 300 other journeys, which is a complex position to be in.”

Lawyers acting for My Surrogacy Journey said the company did not comment on individual cases, but that existing insurance policies were in place and claims continued to be accepted and processed.

They said the company understood that a small number of claims had been rejected and was supporting people seeking to resolve those claims with an insurer.

Under the surrogacy arrangements, intended parents are understood to be contractually required to cover medical costs not paid by an insurer.

The couple said they had been recommended the company’s Mexico option. Its website advertises that intended parents using the route can have a baby in “under 18 months”.

They said they were told the UK route could take up to five years and that the US option was much more expensive.

Lawyers for My Surrogacy Journey said prospective parents are given information about typical timelines, costs, legal frameworks and practical considerations, and that the 18-month timeframe is indicative only.

The couple said their surrogate developed placenta accreta, a serious condition in which the placenta attaches to the wall of the uterus.

Emails from Johnson-Ellis acknowledged that the insurance provider investigated the birth after the surrogate experienced health complications.

The parents are considering legal action, while the Guardian said it understood at least four other couples were reviewing their options.

Phil Brickell, MP for Bolton West, raised concerns in parliament about a separate couple who had used My Surrogacy Journey.

He said: “Two of my constituents recently travelled to Mexico, where their children were born by surrogacy.

“Those births were facilitated by a company called My Surrogacy Journey, which is listed on gov.uk.

“While in Mexico, they had repeated traumatic experiences with the company relating to issues including insurance for their children, accusations of bullying towards staff and repeated efforts to silence any constructive criticism.

“I understand that other members of this house have received similar complaints.”

Brickell called for My Surrogacy Journey to be removed from gov.uk pending a review by the Human Fertilisation and Embryology Authority.

Lawyers acting for My Surrogacy Journey said the company was communicating with DHSC and was confident any issues could be resolved.

Continue Reading

Insight

Research uncovers potential new target for breast cancer therapy

Published

on

Targeting CD1d altered immune cells slowed tumour growth and improved immunotherapy responses in mouse models of breast cancer, researchers found.

The findings suggest blocking the molecule could make the environment around breast tumours more favourable to anti-cancer immune responses.

Further work is needed to understand how these immune changes occur and how the approach could be safely used in patients.

Researchers from King’s College London, the Francis Crick Institute and University College London investigated how immune cells inside breast tumours influence cancer growth.

They focused on myeloid cells, a group of immune cells found in large numbers within tumours that can either support an immune attack against cancer or contribute to tumour growth and immune evasion.

The team examined CD1d, a molecule found on the surface of myeloid and other immune and tissue cells that helps regulate immune responses.

When CD1d was genetically removed from cells in a mouse model of breast cancer, the mice were more resistant to tumour growth. Researchers also saw changes in myeloid cell populations, including increased activity among cells that can help attack cancer.

The team then blocked CD1d using an antibody and again observed changes in myeloid cells and slower tumour growth. Blocking CD1d also improved responses to immunotherapy in the mouse model.

Researchers used single-cell RNA sequencing, a technique that examines gene activity in individual cells, to investigate the immune changes in more detail.

They identified a population of myeloid cells called monocytes that expressed genes associated with inflammation, an important part of the immune response. These cells were particularly important in restricting tumour growth in the mouse models.

A similar pattern of gene activity was identified in data from human breast cancer tumours. Its presence in myeloid cells was associated with positive responses to immunotherapy in breast cancer patients.

However, the findings in people were based on gene expression data and did not test CD1d-targeting treatment in patients.

Professor Patricia Barral, professor of immunobiology at King’s College London and senior author of the study, said: “Many breast cancers do not respond well to current immunotherapies.

“Our findings reveal a previously unrecognised mechanism by which immune cells within tumours are regulated.

“While CD1d is best known for helping immune cells recognise lipid molecules, we found that it also plays a role in shaping the behaviour of myeloid cells within tumours.

“These findings suggest that targeting the immune cells that surround and support tumours could boost anti-cancer immunity and potentially improve treatment responses in the future.”

Researchers now plan to investigate how the immune changes occur and how they can be safely harnessed in patients.

They also want to examine whether targeting CD1d could enhance existing treatments and influence treatment responses in different cancer types.

The work was supported by UKRI BBSRC, Breast Cancer Now and the Cancer Research UK City of London Centre.

Continue Reading

Trending

Copyright © 2025 Aspect Health Media Ltd. All Rights Reserved.