Participatory design of bodysymptoms.org: An interactive web resource to explain multisystem functional somatic symptoms 2024 Saunders, Burton et al

Andy

Andy

Retired committee member
Highlights

  • There is a lack of therapeutic information about functional symptoms online.

  • We undertook a collaborative research-action project to address this gap.

  • Through participatory design we developed open-access website bodysymptoms.org.

  • Lived experience and multi-disciplinary perspectives were brought into dialogue.

  • An interactive explanatory model with actionable health advice was developed.
Abstract

Objective
There is a lack of trustworthy information about Functional Somatic Symptoms (FSS) on the internet. This means integrative bio-psycho-social explanations of FSS and related health advice are not readily available to the public. To explore and address this problem, we carried out the bodysymptoms project, with the aim to build a website which presents current widely accepted explanations for FSS and shows how different explanations are inter-connected.

Methods
Bodysymptoms was set up as a research-in-action project with a diverse range of international stakeholder-participants, combining approaches from patient and public involvement in healthcare with participatory design. 7 participants with lived experience of multi-system functional symptoms took part in the project and measures of meaningful engagement throughout the project were rated highly. This manuscript describes the methodology by which the website was developed.

Results
Through iterative cycles we determined the requirements for an interactive explanatory model and co-created a novel online health interactive resource with integrated actionable health advice. The target end user are young adults with persistent physical symptoms, maintained by functional mechanisms. The overall aim is to empower people at risk of developing functional disorders to seek better health outcomes. The website is intended to be used prior to or alongside engagement with healthcare.

Conclusion
Bringing lived experience and multi-disciplinary perspectives into dialogue through participatory design can harness the power of research to create immediate shared value. This project has resulted in a usable open access website, bodysymptoms.org, which provides education about FSS for patients, healthcare professionals and members of the public looking to understand FSS.

Open access, https://www.sciencedirect.com/science/article/pii/S0022399924002393
 
"7 participants with lived experience of FSS were recruited, who varied in age from early 20s to late 40s. This group represented a balance of genders, with 4 women and 3 men taking part. They represented 6 countries: Portugal, Ireland, the UK, Germany, Denmark and Spain. 5 had majority and 2 minority ethnicities in the countries they live. They all had experienced multi-system FSS and identified with a range of diagnoses including functional neurological disorders, bodily distress syndrome, long-covid, fibromyalgia, chronic pain, chronic lyme, and Fowlers syndrome."
 
As seems to be typical for all these types of researchers, ME/CFS is not mentioned in their publication, but from their website,
"Some of the most common diagnoses characterised by functional symptoms include: Fibromyalgia, Chronic Pain disorders, Irritable Bowel Syndrome, Bodily Distress, Autonomic Dysfunction, Somatic Symptom Disorder, Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Dissociative disorders, Post-viral conditions, and Functional Neurological Disorders.

Note: The diagnostic systems in this area are far from perfect. Diagnoses are often based on the way the medical system is split up into specialties. But in reality, the diagnoses overlap. They share many symptoms, and similar mechanisms are thought to underlie them."
 
Abstract said:
7 participants with lived experience of multi-system functional symptoms took part in the project and measures of meaningful engagement throughout the project were rated highly. This manuscript describes the methodology by which the website was developed.
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Incredible, a paper on 'we made a website, and look how we included the patients in the work, and how grateful they were'. Stay tuned for their next paper 'Participatory design of a webinar, in which we allowed some patients to speak'.

The paper is just the latest in an ongoing series of projects designed to demonstrate how modern, how inclusive, how just generally 'nice' proponents of psychosomatic medicine are. 'We really do care!. Especially about the vulnerable young people.'
Abstract said:
The target end user are young adults with persistent physical symptoms, maintained by functional mechanisms. The overall aim is to empower people at risk of developing functional disorders to seek better health outcomes.
Click to expand...
 
Reminds me of industry-funded disinformation projects from the tobacco or fossil fuel industries.

Holy chockful of empty buzzwords.

Also this is the same idea as neurosymptoms, which has been the goto for years. So it's not trustworthy? I mean, yeah, but still it's kind of silly to pretend.
 
Well this is an impressive jumble of alternative medicine pseudoscience. They do link to neurosymptoms.org, I guess they consider "body symptoms" to be a super set that contains FND. They link to RecoveryNorway, and some "positive" LC website that talks about how believing in recovery is the key.

Basically if you took the average of what every health guru and quack with a story to sell, you can bunch it all up in this. But this is peak pseudoscience, it takes all this bunch of BS and packages it with sciency language that says nothing but sounds like it does. There's the usual bit about how symptoms are just signals that something could be wrong, but in this case it's just faulty, and can be fully ignored and reprogrammed. Or whatever.
 
The website itself is full of all kinds of misconceptions and pseudoscience and drivel, e.g:
Inflammation can be thought of as a sort of soup, laden with immune cells. This inflammatory soup might collect in tissues of the body where the lymphatic channels are not regularly flushed through. This is one reason why moving and stretching the body can help with immune symptoms.

Sometimes, when the immune system is sensitised, it can start to attack our body’s own tissues. This is called autoimmunity. In functional symptoms, any signs of autoimmunity are usually mild, unpredictable, and not tied to a specific issue. It’s more about the body being in a generally inflamed state.
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and:
Boost your microbiome. The microbiome is in direct communication with the immune system. When the microbiome is balanced, it signals to the body that the immune system doesnt need to be on such high alert.
Work towards an anti-inflammatory diet. The immune system is particularly responsive to chemicals in our environment or in our diets. Sugar, alcohol, and highly processed food drive an inflammatory state in the body. An anti-inflammatory diet is high in plants, whole-grains and healthy fats and oils.
Change your surroundings. Could your familiar environment be signalling to the immune system to stay on high alert? If the immune system has learnt to associate symptoms with a particular place, even sights and smells can trigger an immune response. This may be why many people find going on long walks, or taking a holiday, can help ‘reset’ an inflammatory state in the body.
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.. and that's just from one randomly-selected page.
 
Is this another Chris Burton - cloned from the one in Sheffield or wherever, or the same one with two addresses?

To answer my own question it is the same one, except here with address give as Aarhus.

It beggars belief that someone who sat on the NICE Guideline Committee should be turning out pseudoscience like this. Any disconnect I might have had between these people and incompetence and intellectual hypocrisy can be laid to rest.
 
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