bodysymptoms.org: Postlaunch evaluation and update, 2025, Saunders et al

Andy

Andy

Senior Member (Voting rights)

Highlights​

  • bodysymptoms.org presents explanations for persistent physical symptoms.
  • multilingual, co-designed site taking a biopsychosocial, transdiagnostic approach.
  • since website launch, feedback collected on usability, acceptability and relevance.
  • summary of update launched in September 2025 in response to feedback.
  • future directions include dissemination and new routes to personalization.

Abstract​

Persistent physical symptoms (PPS) and functional somatic disorders present significant challenges to clinical communication. There is a lack of resources easily accessible in digital contexts that can support the development of therapeutic explanations and shared understandings. To address this problem bodysymptoms.org was launched in January 2024 as a multilingual, publicly accessible educational website designed to provide evidence-based, integrative explanations of PPS using a transdiagnostic, biopsychosocial framework. This report summarises the post-launch evaluation of bodysymptoms.org and outlines updates made in 2025.

Open access
 
For more on this propaganda project, see also:

Andy

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

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...
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Andy

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

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...
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Lead author:
Chloe Saunders
Bachelor of Medicine
PhD Researcher at Aarhus University
(Per Fink's department)

I am a PhD Candidate in the ETUDE program, part of the Euronet-Soma Network, based at the research clinic for functional disorders at Aarhus University Hospital. My PhD project has been to engage participatory design to develop bodysymptoms.org, an open access online resource to help people with multisystem functional somatic symptoms.

 
‘We don’t understand at all what underlies a range of symptoms so we will collectively invent a narrative that makes clinicians feel more comfortable and gaslight patients so they are more amenable to being fed our psycho and bio neuro babble.’

What is so wrong about admitting when we just don’t know? Certainly my clinical journey over thirty years has been smoother with clinicians who admit they have no understanding of the eitiology of ME/CFS and have no evidenced treatments, rather just focusing on finding practical support for current issues.

[edited to add final paragraph]
 
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I took a quick look at parts of the website. The main resource seems to be this 68 page document:


Skills guide:

Planning Recovery

Overview

Recovering from symptoms usually takes time. It is easy to spend alot of energy on attempts to feel better and loose hope when thingsdon’t work out. We have more success if we are intentional aboutour approach to recovery, and have a plan for what to do, even whenset-backs occur.This guide provides advice to help you plan recovery.

Contents

Advice on using this guide 2

Part I: Recuperation 5
Recuperation skill 1: Slow down 6
Recuperation skill 2: Simplify 10
Recuperation skill 3: Understand your body’s condition 16
Recuperation skill 4: Accept how things are 19
Recuperation skill 5: What’s in the way, is the way 20
Recuperation skill 6: Connect with your resources 21
Recuperation skill 7: Find your way into physiological rest 23
Recuperation Checklist 26

Part II: Rehabilitation
Finding Direction
Setting the Pace
Doing something different
Maria’s guide to Aids and Equipment
The ups and downs of rehabilitation
Click to expand...
It's all based on the assumption that the person is suffering from stress/burnout reactions to their environment such as work, and creates central sensitisation which they claim can be reversed, as far as I can see from their explanations. While that may be useful to people who do actually have a burnout type of problem, they seem to think it applies equally to all the conditions they gather under FND and PPS, including ME/CFS.

The stages in the process are exactly the same as we see all the time from the BPS approach to ME/CFS. Cut back activity and stressors, find your baseline, then start reintroducing activity with goal setting, planning etc. The explanation is the same as we've just been discussing on the BACME pacing-up approach.

page 59

Principle of graded exposure

If you have symptoms that have a particular trigger, then you can work to build tolerance through using the principles of graded exposure.

Why?

For some people, symptoms can be triggered by things thatare usually completely harmless. Common triggers includes normal types of transient stress such as exercise, and things in the environment, including light, noise, or food.

Symptoms triggered by these things reflect stress responsive systems that have become inappropriately sensitised.

However, processes of sensitisation can be also reversed.These same systems can learn to become tolerant to things that they previously reacted to.This process takes time and requires repetition of exposure to the trigger in gradually increasing ‘doses’. Exposure is a learning process: you are unlearning the reactions that occur automatically in the bodily systems.The body needs time to adapt.
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The assumption is that it's always possible to build tolerance through graded exposure. This is not true. It can also lead to increased sensitivity and worsening. It can also lead to a situation where there is an illusion of improved tolerance when in reality what has happened is a change in resource allocation.

If the person is under too much exposure to a trigger, why should one believe that reducing exposure and then gradually increasing it to the same level as before or higher, would not result in the same response? Where are the experiments demonstrating this? Without an experiment demonstrating this it's just neurobabble.
 
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However, processes of sensitisation can be also reversed.These same systems can learn to become tolerant to things that they previously reacted to.This process takes time and requires repetition of exposure to the trigger in gradually increasing ‘doses’. Exposure is a learning process: you are unlearning the reactions that occur automatically in the bodily systems.The body needs time to adapt.
Click to expand...
And how exactly does the body unlearn the reactions?
 
This looks about as valid as testimonials on the LP website. It's a very limited audience to begin with, the vast majority of people want nothing to do with this, and so this is a lot like an astrology service 'evaluating' itself by asking its visitors. People who choose to visit this are not representative of the population they want to target.

Basically, this is marketing. Not the good kind either, more like a bunch of 'yes men' who will say yes to anything to give the impression that this product will fly off the shelves, unbothered by whether it happens or not because it won't affect anything they do.
bodysymptoms.org can be understood as a repository of metaphors, narratives, and explanatory framings that foster awareness of transdiagnostic mechanisms for PPS across diagnostic boundaries [10]. The website holds potential for both self-help and to support shared understandings within integrative treatment approaches.
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Seriously, every single fraudulent fake product out there is described in those terms. This is the NFT equivalent of health care with nothing but "imagine yourself" buzzwords.
Because participation in this feasibility evaluation was voluntary and non-systematic, the feedback included in this report should be considered biased toward individuals with higher digital and health literacy.
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Again, this is just a bad marketing focus group. Obviously the bias that exists has nothing to do with that, for the same reasons that people sent to an astrology website have biases that don't have anything to do with knowledge of astronomy either.
InitialConditions said:
It doesn't matter if the explaination is correct or not. A key part of this approach is the belief that just telling patients stuff, whether it's actually true/verifiable or not, can help. I think they call it psychoeducation.
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Without any evidence for it, and they call it evidence-based medicine. :rolleyes:
 
The discussion of PEM is probably of special interest to the forum, especially point 3: "You can’t trust the research?"

Energy and exercise - Bodysymptoms

This article helps to explain the physiology of fatigue, and gives advice on pacing, exercise, and Post Exertional Malaise (PEM).
bodysymptoms.org bodysymptoms.org
Post exertional malaise (PEM)

It’s completely natural to have questions or concerns as you read this. You might even be wondering if exercise could potentially make things worse for you.


Post exertional malaise (PEM) is the name given to the experience of having a dip in energy, and reduced exercise tolerance, in the days following exertion (strainful exercise).


There is a lot of discussion online about PEM, and unfortunately, some of it can be misleading.

Let’s take a moment to address a few​


1: PEM is only experienced in Myalgic Encephalitis (ME)​

You might come across the idea that post-exercise crashes are exclusively tied to ME.

While it’s true that people with ME experience PEM, it’s important to remember that this symptom isn’t limited to just one condition.

In fact, PEM can occur across a wide range of conditions and syndromes.

We hope this brings some reassurance: experiencing PEM does not automatically mean you have ME. It’s a symptom that can be seen in different contexts, and it’s not always indicative of a severe chronic health issue.

2: Exercise is harmful if you have PEM​

You will often read on the internet that exercise can be harmful, and make symptoms worse. It is important to hold this frightening thought in balance.

While there have been examples where exercise therapies were not well-implemented and pushed people too hard, it’s important to recognize that a paced and gentle approach to movement is necessary to rebuild health.

The key is to work within your body’s limits and gradually build up tolerance, without pushing too far too fast.

You can read our advice on pacing in our Guide to Recovery Planning Skills

3: You can’t trust the research?​

You might come across claims that research on graded exercise therapy (GET) is unreliable or that it’s been tainted by fraud. Such claims can understandably be concerning.
In our reading of the literature, multiple trials show that GET has a positive impact for most people with fatigue, and we encourage you to explore our references.
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Liie said:
The discussion of PEM is probably of special interest for the forum, especially point 3: "You can’t trust the research?"

Energy and exercise - Bodysymptoms

This article helps to explain the physiology of fatigue, and gives advice on pacing, exercise, and Post Exertional Malaise (PEM).
bodysymptoms.org bodysymptoms.org
Click to expand...
Their references are a 30+ page list of studies. The only relevant one in the exercise section is this propaganda review by one of Chalder’s students.

 
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