Embodied wisdom: towards acceptable and helpful explanations for functional somatic symptoms, 2025, Saunders et al

[Andy]

Abstract​

Many people with persistent symptoms navigate illness without an adequate explanatory framework. The systematic disadvantages that arise from the lack of a collectively shared explanation can be considered a form of epistemic injustice, namely hermeneutic injustice. In response to this problem, we explored whether therapeutically relevant and broadly acceptable explanations for symptoms could be developed through iterative stages of dialogue between knowledge partners with lived experience of multisystem functional somatic symptoms (FSS), healthcare professionals across disciplines, symptom researchers, translators and designers.

This participatory design project, positioned within a contested area of healthcare, aimed to bridge the gap between patients’ and healthcare professionals’ epistemic worlds by offering a symptom explanation framework that can reflect complex causality and multiple perspectives. Key conceptual considerations encountered during the process included: the importance of coherence across ontological, scientific and clinical levels of explanation; the need for a therapeutic model of agency that empowers without assigning blame; the integration of temporal dimensions into explanation; the use of metaphor and personal narrative; the role of the internet in shaping illness identity; and the challenge of personalisation of explanations intended for the public domain.

The resulting framework is available open-access at www.bodysymptoms.org and presents 28 broadly relevant, acceptable and usable explanations for FSS, drawn from current perspectives of patients, healthcare professionals and researchers across Europe, alongside actionable health advice.

Open access

 

[Chandelier]

This looks like a project with quite some financial backing behind it!

There is an endless stream of very questionable statements on their website and they even provide a recovery guide (68 pages!).

 

[Trish]

I did a quick run through of parts of their resource. It's all about finding the story that makes sense to you.

I filled in the bit where it asks about symptoms. It concluded the usual stress, sensitisation stuff, even though I only filled in physical symptoms not mental health problems.

The PDF on their treatment plan is two stages - recuperation followed by recovery. That is the old find your baseline then add activity challenges.

Nothing new under the sun.

Goop meets BPS.

Enjoy!

 

[Utsikt]

Key conceptual considerations encountered during the process included: (…) the need for a therapeutic model of agency that empowers without assigning blame;

Why is that needed?

Does cancer patients need a therapeutic model of agency that empowers them to fight they cancer?

Or do they need safe and effective treatments that lets them focus on dealing with the horrifying reality of being severely and potentially fatally ill?

The blind is leading the blind.

 

[Peter T]

Presumably people only become obsessed with providing narratives when no one has any meaningful ideas about what is going on.

Personally I would rather researchers and clinicians just admitted that we don’t know about the aetiology and have no meaningful treatments so all we can do is manage the symptoms and provide any relevant practical support.

 

[rvallee]

Many people with persistent symptoms navigate illness without an adequate explanatory framework

Who ever said that an "explanatory framework" is something anyone needs? There is not a single study, survey or set of testimony where you will even find words to that effect, let alone expressed as needed. Especially as it's both implicit and explicit that it is not representative of reality, fake explanations, which no one needs. This is entirely about what they want, has nothing to do with what patients need. So the entire premise here is false.

Total word salad, entirely disconnected from reality, as usual. They are literally admitting that all of this is made-up with the intent of convincing people of their bullshit. It's not even subtle, it's the whole thing.

In part, the failure of medicine to explain conditions characterised by FSS can be attributed to the complex nature of the symptoms. Explaining time-variable dysfunction, rather than stable symptoms associated with reliable signs, requires a paradigm shift in the causal models employed by modern medical science in its analysis of the body

You can't explain conditions without understanding them, and that is literally your job, which you failed miserably at. But the second sentence is total bullshit. Lots of illnesses have fluctuating courses and there is no such thing as a medical paradigm where symptoms and illness are fixed in time. Just a bunch of noise used as cheap excuses.

Again, this is like feeding the output of a LLM to a LLM. A bullshit machine, fed on its own waste, producing nothing but more waste and hot air.

Total unserious junk:

Just a bunch of labels with, uh, dotted lines, placed with no concern for coherence or anything like it. You can find more convincing and less offensive nonsense at a Goop convention, or in a fortune cookie.

Reading through the rest of this word salad, they merely describe the process of how they made up a website with the traditional made-up pseudoscience. None of this is scientific, it's not even academic.

 

[Utsikt]

In part, the failure of medicine to explain conditions characterised by FSS can be attributed to the complex nature of the symptoms. Explaining time-variable dysfunction, rather than stable symptoms associated with reliable signs, requires a paradigm shift in the causal models employed by modern medical science in its analysis of the body

I wonder if these people have ever encountered any sick person ever? Do they really believe that all diseases have stable symptoms associated with reliable signs?

 

[Sean]

This participatory design project, positioned within a contested area of healthcare, aimed to bridge the gap between patients’ and healthcare professionals’ epistemic worlds by offering a symptom explanation framework that can reflect complex causality and multiple perspectives.

Presumably people only become obsessed with providing narratives when no one has any meaningful ideas about what is going on.

Personally I would rather researchers and clinicians just admitted that we don’t know about the aetiology and have no meaningful treatments so all we can do is manage the symptoms and provide any relevant practical support.

Exactly. All this extravagant rhetorical window dressing just to avoid having to say: 'We don't know. We got nothing.'

Nothing new under the BPS sun indeed.