Drawing the lines of fibromyalgia: a mixed-methods approach to mapping body image, body schema, and emotions in patient subtypes, 2024, Swidrak

voner

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Spanish authors…. I did not read beyond the abstract. it seems rather stunning to me that this is considered science…

https://pubmed.ncbi.nlm.nih.gov/39557041/

I found a pre-print here:
https://files.osf.io/v1/resources/q...2?format=pdf&action=download&direct&version=1

Abstract
Fibromyalgia is characterized by widespread chronic pain and multiple additional symptoms which may result in significant disability. Recent studies have demonstrated disturbances in body image and body schema in people affected by this condition. Importantly, it affects a heterogenous population in which distinct profiles can be identified based on physiological and/or psychological characteristics.

The objective of our study was to explore individual differences in experiencing one's own body in fibromyalgia. We applied a mixed methods design and included data from 28 women diagnosed with fibromyalgia. We measured symptom intensity (Fibromyalgia Impact Questionnaire, part 1), disturbances in body schema (adapted Fremantle Back Awareness Questionnaire) and body image (Body Esteem Scale, Multidimensional Assessment of Interoceptive Awareness).

Additionally, participants drew their bodies and how they experienced them (Body Drawing task). Next, we asked five experts in chronic pain treatment to evaluate the drawings on a specially designed scale and indicate what kind of emotions these drawings expressed.

We found evidence of disturbed body experiences and large individual differences in each of the measured variables which allowed for clustering participants into three groups, named 'Connected body', 'Conflicted body', and 'Disconnected body'. These preliminary results suggest patients with fibromyalgia may have both qualitatively and quantitatively distinct disrupted body experience.
 
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Mind-body approaches, such as massage, yoga, movement therapy, or meditation, have been proposed as a potentially useful treatment strategies for various chronic conditions, including FM, chronic fatigue, low back pain, and irritable bowel syndrome (Mehling et al., 2011). Although the preliminary evidence confirms certain usefulness of these techniques in the management of chronic pain, a strong overall heterogeneity with regard to the symptoms and intervention outcomes (which cannot be explained by differences in control intervention or intervention type) suggests one should remain cautious in drawing conclusions about their usefulness. This heterogeneity of both psychological and physiological characteristics in FM has multiple sources, including problems with clinical implementation, nonspecific criteria, nonspecific symptoms, and outdated knowledge among clinicians (Cohen, 2017; Kumbhare et al., 2018).

Subgrouping allows for a better understanding of this heterogeneity and may offer more tailored, and consequently, effective, treatments.

So, an acknowledgement that the usual "treatments" haven't really been shown to work. The solution - divide the population into subsets so that the right treatment can be provided to each group.

Looking for subsets in a sample of 28 people? That's bad enough. Dividing them up according to their drawings of their bodies, as provided on a single day in a setting where the participants are likely to assume that the researchers are interested in their illness experience? Might as well have given the 28 people cups of tea and had the "five experts in chronic pain treatment" read the tea leaves, in order to create groups for appropriate treatments.
 
Body esteem

The BES scores were overall low, with the appearance of stomach (M = 1.83, SD = 0.92) and the level of energy (M = 1.94, SD = 1.24) evoking the most negative emotions, while the lips (M = 3.24, SD = 0.90) and appetite (M = 3.30, SD = 0.88) evoked neutral to positive emotions. The mean scores in subscales were close to the midpoint of the scale. The sample varied the least in the Sexual Attractiveness subscale (σ2 = 0.37), and the most in Physical Condition subscale (σ2 = 0.65).
No controls... not healthy controls nor disease controls.
 
A paired t-test revealed that the painful body parts triggered significantly more negative emotions than the painless body parts and the difference was large (T(2, 26) = −5,96, p < 0.001, Cohen-d = 1.03)
Amazing


Cluster 2 “Disconnected Body” contains various types of drawings, some non-human like, with feet or palms missing, others with detail or disproportionate body shape (e.g. very small head compared to the torso)
Perhaps the researchers have divided their fibromyalgia population according to how good the patients are at drawing. Probably as good a subsetting as most others suggested for fibromyalgia.



It is also important to note that not all participants have their body image and/or body schema disturbed



Interoception is a key component of a bidirectional body-brain system for the predictive and adaptive control of physiological state, but the role of its subcomponents in chronic pain is still inconclusive (Bonaz et al., 2021). Recently, Todd et al. (2024) identified a subgroup who demonstrated very strong evidence of being more interoceptive, and concurrently had lower FM symptom impact (although the effect size was small). Conversely, self-reported interoception was positively correlated with FMS symptom severity and impact. In our study, no association was found between the level of symptoms, body esteem, or body perception disturbances for five MAIA subscales (Noticing, Not-Distracting, Not-Worrying, Emotion-Awareness, Body-Listen). This result suggests that some aspects of interoceptive awareness may be more influenced by long-term experience of pain. Here, subscales related to specific coping strategies and the attitude towards one’s own body (trust) correlated with other aspects of body awareness, unlike the subscales related to attention and emotions. Further studies could analyse potential relationships between body awareness and each of the interoceptive awareness aspects separately.
Interoception continues to be a confused but unproductive area of investigation. But still researchers keep trying to make it relevant.
The evaluation of different aspects of interoceptive awareness (listening to the body and trust towards it) obtained high scores, while subscales related to the attentional and affective functioning towards painful stimuli were scored low.
Sounds pretty healthy.



The distribution of the results in the “Disconnected Body” group suggests that these women may often experience hyperembodiment, when their bodies are always present, uncontrollable, and problematic
It would be more concerning if the women often experienced their bodies not being present...
 
The pictures the women drew are in the Appendix, that bottom of the document. They are interesting to look at.

Clearly, the women thought that they were supposed to be marking where they experience pain. The pictures that were grouped into the three subsets are diverse. Some of the women downloaded body outlines rather than drawing their body, surely making this study useless in terms of divining some hidden psychopathology.

e.g. Connected body
Screen Shot 2024-11-20 at 4.15.17 pm.png

e.g. Conflicted body
Screen Shot 2024-11-20 at 4.15.59 pm.png

e.g. Disconnected body
Screen Shot 2024-11-20 at 4.16.22 pm.png
 
You might think, what is wrong with that blue drawing I used as an example of a 'conflicted body'?

Cluster 1 “Conflicted Body” included only five drawings. All of them were very simple, schematic, and lacking detail, in some cases, even a head or face. Even though only women participated in the study, some silhouettes had wide shoulders and narrow hips.
It seems that the body did not look feminine enough, with its wide shoulders and narrow hips.

And yet, here's an example of a 'Connected Body', which also has wide shoulders and narrow hips.
Screen Shot 2024-11-20 at 7.01.05 pm.png

And, just to make things even more confused, here's another 'Connected Body', which the researchers interpreted as a disembodied body floating over the body curled in pain.
Screen Shot 2024-11-20 at 7.01.28 pm.png

The study is so, well, shoddy. And arrogant. I've seen junk surveys in magazines with more credibility than this study.


And if course, it's not really about the patients (and no, I have not made this up):
Emotions evoked in the judges
The questionnaire for the competent judges included a question about the emotions evoked by Body Drawing. Overall, the three most frequent answers were: none (ninguna, N = 8), happiness (felicidad, N = 8), and tension (tensión, N = 6). In each cluster a distinct emotion was selected most of the time: none (cluster 0), happiness (cluster 1), and tension (cluster 2).
Let's worry about what the "competent judges" felt when faced with looking at the images for 30 minutes or so. That's so much harder than having a painful chronic disease while being labelled with various sorts of inadequacies.
 
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Justyna Świdrak a*, Tamara Rodriguez b, Luciano Polino b, Ana Arias b, Xavier Torres Mata b, Maria V. Sanchez-Vives c

a) 1) Institut d’Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), Barcelona, Spain; 2) Institute of Psychology Polish Academy of Sciences, Warsaw, Poland
b) Rheumatology Service, Hospital Clínic de Barcelona, Barcelona
c) 1) Institut d’Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), Barcelona, Spain; 2) ICREA, Barcelona, Spain

Correspondence to: Justyna Świdrak, IDIBAPS, c/Córsega 176, 08036 Barcelona, Spain, email:swidrak@recerca.clinic.cat.

IDIBAPS "Where the medicine of tomorrow begins"
 
For the body drawing task participants were asked to draw freely the way their body feels and mark areas that feel different or painful.

The people judging the drawings were psychologists or doctors who are experts in pain and didn't know the participants.

participants drew their bodies and how they experienced them (Body Drawing task). Next, we asked five experts in chronic pain treatment to evaluate the drawings on a specially designed scale and indicate what kind of emotions these drawings expressed.

We found evidence of disturbed body experiences and large individual differences in each of the measured variables which allowed for clustering participants into three groups, named 'Connected body', 'Conflicted body', and 'Disconnected body'. These preliminary results suggest patients with fibromyalgia may have both qualitatively and quantitatively distinct disrupted body experience.

Is this an art competition or a scientific study? Participants are asked to draw freely, yet their drawings are being interpreted as revealing psycholical flaws. Surely things like wide shoulders and narrow hips could be just a rushed drawing focused on identifying areas of the body, not anything to do with how they perceive their body shape.

The whole think is nonsense and the researchers are being dishonest with participants. They should have told them that their drawings were being used for judgemental psychological interpretation. And why not just ask the patients if they feel disembodied or whatever.
 
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Additionally, participants drew their bodies and how they experienced them (Body Drawing task). Next, we asked five experts in chronic pain treatment to evaluate the drawings on a specially designed scale and indicate what kind of emotions these drawings expressed.
Serious expert stuff.

I wonder what they'd make of my stick figure drawings. Since I couldn't draw anything even if my life depended on it.

What a bunch of silly nonsense. And somehow we're the ones who are mocked for believing in weird stuff.
 
Mind-body approaches, such as massage, yoga, movement therapy, or meditation, have been proposed as a potentially useful treatment
I definitely agree with the premise, but this used to be called alternative medicine. It's still called alternative medicine, but it's also now called "mind-body techniques".

Also lots of devious "people are saying" and "studies are suggesting" when it's literally just opinions with zero evidence for them and has always been nothing but that. They want the woowoo to be true so bad the are willing to destroy the credibility of medicine to achieve it. But of course the only thing they will achieve is provide ammunition to people who criticize medicine for the wrong reasons. And you can't even blame them at this point, they're making it too obvious that they can't be trusted with anything and badly need oversight and accountability.
 
I definitely agree with the premise, but this used to be called alternative medicine. It's still called alternative medicine, but it's also now called "mind-body techniques".

Also lots of devious "people are saying" and "studies are suggesting" when it's literally just opinions with zero evidence for them and has always been nothing but that. They want the woowoo to be true so bad the are willing to destroy the credibility of medicine to achieve it. But of course the only thing they will achieve is provide ammunition to people who criticize medicine for the wrong reasons. And you can't even blame them at this point, they're making it too obvious that they can't be trusted with anything and badly need oversight and accountability.


I have the same drawing skills you mentioned. The patients only used the body to put their arrows and x's on to point out the most painful spots. I don't think the proposed "treatment" options was what patients expected.

Psychologists might want to do some soulsearching. When previous interventions were not succesfull maybe it's time to recognise they can't treat it psychologically.
 
I guess if the drawings had been highly artistic, that would have been clear evidence of over-achievers / perfectionism.

Is this an art competition or a scientific study? Participants are asked to draw freely, yet their drawings are being interpreted as revealing psycholical flaws. Surely things like wide shoulders and narrow hips could be just a rushed drawing focused on identifying areas of the body, not anything to do with how they perceive their body shape.

To add a little humanity to that lacking in this "research", I have a good friend with one science daughter and one arts daughter. The arts daughter makes a living creating beautiful digital artworks in real-time online (I think on Twitch). Not her site but here's a page which goes over some of the basic points for proportions: Drawing Female Body: Tips and Techniques for Accurate Proportions
 
Talk about throwing thousands of cards (theories, instruments, schemas) up in the air and taking it all very seriously which makes the study unreadable.

They could have just said that FM is very disturbing to sufferers.


But I learned a new word from the article: somatoparaphrenia.

Which (per wikipedia): is a type of monothematic delusion where one denies ownership of a limb or an entire side of one's body. Even if provided with undeniable proof that the limb belongs to and is attached to their own body, the patient produces elaborate confabulations about whose limb it really is or how the limb ended up on their body.[1][2] In some cases, delusions become so elaborate that a limb may be treated and cared for as if it were a separate being.[1
 
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The study is ridiculous, but I don't find it funny; given the context it's disturbing.

This is a direct continuation of the activities of Walitt & his colleagues at the NIH.

Short recap: the NIH's division for alternative medicine/complimentary health (acupuncture, yoga, meditation, mindfulness), NCCIH, has recently started up a project that has the goal to produce research that can be used to underpin the promotion of these complementary/alternative methods as treatments within medicine. Walitt has worked there and has for years promoted the idea that fibromyalgia and ME were "interoceptive disorders", a matter of mistaken sensations. The NCCIH-initiated project team has rewritten the definition of interoception, and fabricated it as "bi-directional", so that found "interoceptive" issues can then be argued to be targeted with alternative practises (their "product").
They have no proof for this mechanism, they have only recently set out to produce that.

An yet, here we are:
Swidrak et al. said:
Interoception is a key component of a bidirectional body-brain system for the predictive and adaptive control of physiological state, but the role of its subcomponents in chronic pain is still inconclusive (Bonaz et al., 2021). Recently, Todd et al. (2024) identified a subgroup who demonstrated very strong evidence of being more interoceptive, and concurrently had lower FM symptom impact (although the effect size was small). Conversely, self-reported interoception was positively correlated with FMS symptom severity and impact.
Bonaz et al is directly realted to the NIH and the NCCIH interoception project. It was published in the same special edition of the journal Trends in neurosciencies (on "the neuroscience of interoception") that held Chen et al.'s interoception redefinition as opening article.

Bonaz et al's last author is Hugo Critchley; he was one of the two keynote speakers at the first NCCIH-initiated Blueprint for interoception initiative meeting in 2019; Critchley co-authored a study paper on "Fibromyalgia and ME/CFS: an interoceptive predictive coding model of pain and fatigue expression." It's third author works at Koroshetz' NINDS on pain (headaches/migraines apparently).

I can't read the whole "acknowledgements" section, but in part it reads: "We would like to thank all participants of the NIH Blueprint for Neuroscience Research workshop on ‘The Science of Interoception and Its Roles in Nervous System Disorders’, NIH Blueprint Workshop, 16–17 April 2019, Bethesda MD, with a special thanks to Dr Wen Chen from the National Center for Complementary and Integrative Health (NCCIH)."

Bonaz et al opens with:
"Interoception, the sense of the body’s internal physiological state, underpins homeostatic reflexes, motivational states, and sensations contributing to emotional experiences. The continuous nature of interoceptive processing, coupled to behavior, is implicated in the neurobiological construction of the sense of self. Aberrant integration and control of interoceptive signals, originating in the brain and/or the periphery, can perturb the whole system."
Their article uses the same bi-directional definition of interoception, and says that "interoceptive mechanisms appear central to somatic disorders of brain–body interactions". I've left the hyperlink from the paper in, because yup, that links to an article by Judith Rosmalen on "functional somatic disorders", syndromes of related complaints with no known underlying organic pathology, which names chronic fatigue syndrome as first of the "big three" that are parked under it. (The other two are fibromyalgia and IBS.)


Todd et al also uses Chen et al.'s interoception redefinition.

"[Interoception] is a process by which the nervous system detects, interprets, integrates, and regulates information from the internal body (Chen et al., 2021)." Note, again, that interpreting, integrating and regulating were added according to NCCIH director Langevin & co's personal preferences.

The NCCIH-initiated, product-driven project opens the door to wide-scale further muddying of the science of these conditions. (As the NCCIH also seems to rely heavily on psychosomatic narratives for their recent new direction, they will no doubt be enthousiastically joined by the psychosomatic movement, which has similar aims to infiltrate medicine and reshape it according to its ideology.)

It appears that it will be done by the following steps*:

1) reduce an illness to "how it feels" and "perceptions", sensations of pain, sensations of fatigue
2) redefine interoception so it magically also includes that the nervous system "interprets, integrates and regulates information from the internal body" and add a "descending body regulation component" - claim that the process of interoception is "bi-directional".
3) produce studies that focus on physical sensations which "find" that this is a key thing in condition A, B or C
4) based on the claimed bi-directionality of having sensations: propose "interventions" out of their stable, labelled as "mind-body therapies", to treat the condition - meditation, mindfulness, massage, yoga, CBT, etc..

(*I expect produced evidence for the new interoceptive definition will be inserted as it becomes available)

It's basically Walitt's original "interoception" bull further refined and applied on a large scale by the health agency of the US government.
(And the NIH's ME project is closely involved.)

So yeah, this study is ridiculous, and does not pass scrutiny, but with its narrative, use of the NIH's interoception redefinition and focus on "body experiences" it clicks right in place on this NIH project. It's the further spreading of an unsubstantiated but ideologically/financially desired narrative, and referral fodder in getting that narrative established for NCCIH purposes (getting alternative practises integrated into medicine as treatments). I find the fact that this is picked up without an iota of substantiation, just wishful theorizing, both telling and worrying.
 
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