About.
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.
Our interactive explanatory model was developed over the course of a year, drawn from up-to-date research, and 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.
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 is part of 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 functional somatic symptoms, syndomes and disorders.
This primary research team is based in the Department of Functional Disorders based in Århus University Hospital, Denmark.
The project is funded by the European Union’s 2020 Horizon Grant.
Please consider sharing your experience
We launched bodysymptoms in January 2024, but this is not its final form. We will continue to improve the website over the next year 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, Julie Goutte, Kristina Frederiksen, Lineke Tak, Manouk van de Klundert, Maria Amparo Soriano, Marinus Lamper, Maritxu Muñoa, Markku Sainio, Monica Greco, Nanna Johannesen, Nathalie Coombs, Nick Mamo, Omer Van den Bergh, Paul Hüsing, Philip Riley, Rafa Gracia, Rasmus Schelde Iversen, Siobhan Mac Hale, Søren Sperling, Svenja Karstens, Tia Knific, Titt Lyngsø, Tobias Steinberg, Victor Pitron, Lisa Maria Wu, Volunteers at Super Collective Aarhus,
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.’