About Bodysymptoms.
bodysymptoms is a participatory design research project.
The Project.
Our aim was to make a website about how functional symptoms come about, become persistent and how these processes can be reversed.
To do this, we brought together perspectives from healthcare-professionals, people with direct experience of living with symptoms, carers of people with symptoms, researchers, designers and web developers.
Download a short project description.
bodysymptoms was initially developed over the course of a year, based on the most helpful and widespread explanations for functional symptoms that are used in specialist treatment services across Europe.
Usability, relevance and acceptability were key considerations in which explanations to include, and how to present them.
You can read more about the considerations that arose during the development of our explanatory model here.
Why we think this is important
People with multisystem functional symptoms often get different diagnoses (e.g. IBS, Fibromyalgia or FND) depending on what medical specialist(s) they see.
Getting multiple diagnoses without understanding how they are connected causes confusion that can be anxiety provoking for people with functional symptoms.
What’s more, medical professionals are often poorly trained in managing these conditions and can struggle to provide helpful, relatable explanations within the time constraints of a typical appointment.
Because of the lack of knowledge about these conditions, people with functional symptoms can find themselves misunderstood or stigmatized in the wider society.
Good online information can help: we know what people understand about functional symptoms is important for whether symptoms get better or worse. However, in many countries there is a lack of high quality, accessible, research-based online resources which help people understand how their symptoms relate and navigate management options.
We wanted to do something about this.
How is the project organised and funded?
This participatory design project was established during a PhD research project, part of a wider network of 15 PhD researchers working on various projects looking to expand our understanding of the mechanisms, diagnoses, treatment of persistent physical symptoms, functional somatic syndomes and disorders.
The project was funded by the European Union’s 2020 Horizon Grant.
This primary research team is based in the Department of Functional Disorders based in Århus University Hospital, Denmark.
We know there is more work to do, and have a lot of ideas based on your feedback about where improvements and new features are needed.
In 2026 we are looking for funding to keep the website online, and ensure it stays relevant and up to date. We also plan to set up an international steering group to manage the website going forward.
Contact us if you would like to know more about how you can be part of the future of bodysymptoms.
Please consider sharing your thoughts
We launched bodysymptoms in 2024. In February 2026 we launched this updated version. However this is not its final form. We will continue to improve the website based on your suggestions. Every response will help us gather the information we need to keep bodysymptoms up-to-date and relevant for more people like you. Thankyou!
Meet the Team.
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Chloe
she/they
lead researcher
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Lisbeth
she/her
research supervisor
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Ava
she/her
lived experience participant
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Javi
he/him
lived experience participant
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Terence
he/him
lived experience participant
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Aimee
she/her
lived experience participant
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Zoe
she/her
lived experience participant
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Maria
she/her
lived experience participant
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Marc
he/him
lived experience participant
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Chris
he/him
research supervisor
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Charlotte
she/her
research supervisor
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Heidi
she/her
research supervisor
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Team Lutalica
they/them
developer and web design
Contact us
Acknowledgements
There were many people who freely gave their time to help with bodysymptoms. They reviewed content, drew pictures, formatted PDFs, narrated audio, translated content, provided inspiration, and suggested helpful improvements.
Our special gratitude to:
Ali Amidi, Anne-Sofie Nielsen, Brodie McGhie Fraser, Caoimhe McLoughlin, Caroline Wigmore, Cecilia Jesperson, Eileen Dorte, Eilidh Hollow, Em Chittock, Emanuel A Sammut, Ema Kinsel, Eliza Bishop, Helle Obenhausen Andersen, Jacob Aramak, Judith Rosmalan, Kristina Frederiksen, Lineke Tak, Maria Amparo Soriano, Marinus Lamper, Markku Sainio, Monica Greco, Nanna Johannesen, Nathalie Coombs, Nick Mamo, Paul Hüsing, Philip Riley, Rafa Gracia, Rasmus Schelde Iversen, Siobhan Mac Hale, Søren Sperling, Svenja Karstens, Tia Knific, Titt Lyngsø, Tobias Steinberg, Lisa Maria Wu, Volunteers at Super Collective Aarhus,
Translations
While we continue working to improve the quality of many translations, our goal is to ensure that every page is both translated and reviewed by healthcare professionals who care for patients in that language.
We are now moving towards automatically translating content, followed by review by healthcare professionals. At present, some updated content has not yet been translated or reviewed across all languages. We are working on this. For the most accurate and up-to-date information, please refer to the English version of the site, which should be considered the primary reference.
We are greatful to translation review by:
Swedish: Carl Sjöström, Arwa Josefsson, David Gyll, Hannah Linnros, Johan Bengtsson
French: Victor Pitron, Julie Goutte
German: Katrin Bopp
Spanish: Maritxu Muñoa
Norwegian: Camilla Herbern Arnberg. Helene Helgeland
Dutch: Manouk van de Klundert, Omer Van den Bergh, Peter Lucassen, Juul Houwen
Danish: Heidi Pedersen, Lisbeth Frostholm, Cecilia Jespersen,
Ava's experience
I found out about this project through my neurologist. I met with the project lead to see if we were a good fit and to discuss the ways and aims of the project. Soon, we had the first workshop: Chloe, the project lead, and Lisbeth, her project supervisor, Cecilia the development designer, and us, a sample of those with lived experience, originally five, growing to seven participants, from various EU countries. We had the most different backgrounds one can imagine, which I believe contributed to the richness and authenticity of the project.
The scope of the project itself was quite wide in nature. It was so much more than building a website, there was a lot of will, heart and care in its purpose. We all contributed from the very scratch, starting with very broad potential types to the nitty gritty of more than twenty iterations, each with its own complexities. And from medical-speal, all of this had to be explained in plain-speak. We also had to consider technical elements, such as making it mobile use-friendly or provide content in audio format.
I am a humanist; I believe in helping one another and togetherness. This project symbolises that for me in a sort of philosophical way. Above all, we were given agency, which I am sure can mean the world for those who have Functional Symptoms. We also wrote our life stories for the website, so we could not only be heard, but also read, always in the hope of helping disseminate the lived in experience. Our sharing of our specific circumstances is our way of making the website accessible and humane, with a similar voice of the person on the other side.’