The Mind-Body Syndrome Study (2019) Maroti et al

TiredSam said:
Written by someone with pronounced stupidity that they devote a lot of time and intelligence dealing with.

I am emotionally aware enough to realise that I need to stop reading this "study" after the first sentence.
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Yeah that's a doozy. Reads exactly like this:
pronounced poverty that they devote a lot of money and resources dealing with
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Education is completely wasted on fools. Shows what happens when people are allowed to make up their own definition of common words.
 
Kalliope said:
They received some comments about the study in that Facebook post, and just replied (translated from Swedish):
this study is very well in line with how we work at bragee rehab, that's why it's featured here in bragee rehabs's fb flow.

ETA: Earlier today they said in another comment that they'd link to the study only to provide information for some of their rehabilitation patients. But that research into ME is going in a completely different direction and that the link was not meant as a tip for ME patients.

:confused:

ETA: They edited the comment about the study being in line with how they work by adding that the link was shared for their rehabilitation patients and that perhaps Karolinska Institute should receive some information about ME/CFS and where the research is today.
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Daniel Maroti posted in Bragée Rehab's old Facebook thread today, saying that they are now recruiting participants to a new study https://mbsstudien.se/

Someone wrote a comment with some really important questions for Bragée Rehab:
Google Translate said:
Why does it say above in Bragee's post that it is not intended for those with ME/CFS - when the study explicitly addresses ME patients?

Do you at Bragee and the researchers have different views on which people are suitable for this study? I hope so, but I do not understand why in that case you let Maroti recruit here.

Unfortunately, the study seems to have major methodological and ethical problems, in the same way as the heavily criticized PACE study. - You must first learn to ignore your symptoms and then the researchers assure that they would not be important but only caused by ghosts in the patient's brain, then fill in a self-assessment form.

There is no control group with matched controls for completely crucial aspects in this context, such as age and time of illness and disease picture.

We know that the majority of primary care physicians out there do not fully understand ME and the risks of PEM. Thus, one can hardly expect the certification procedure to be patient safe.

We know today that many ME patients have deteriorated severely over time by the advice to ignore their physical symptoms! And we know about the lack of biomedical research around their cause.

It is NOT defensible to advise ME patients to ignore their physical symptoms - as little as to ask a person with, for example, flu or concussion to do this!
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Sadly, the reply from Bragée was hugely disappointing and didn't even adress the concerns raised :(
Google Translate said:
Hi! Feel free to look up in the thread to see previous answers to your objections.

This is a FB page primarily for Bragée Rehab (hence the name), ie our rehabilitation for pain and/or fatigue, and where we want to tell former rehab participants about things we think can be useful.

Not everything suits everyone, even in the area of pain and fatigue, it does not even need to be said. Everyone must use their own judgment and our rehabilitation aims to equip the participants to be able to move forward on their own with their continued improvement.

That we link to the study is because it is well in line with our rehabilitation program for pain/fatigue and that research in the field is welcome.
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Another commenter also replied to the person asking the questions:
Google Translate said:
Thanks! This really does not look safe for patients. Everyone who participates in studies has the right to fully understand the risks. How do you, who are responsible for the study, think that you should take responsibility for if there is a permanent deterioration and increased suffering among the participants?
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I can't help but getting the impression that patient safety isn't a priority for Bragée... :(

(Edited to correct typos.)

ETA: Re: "ghosts in the patient's brain" ("hjärnspöken" in Swedish). I just heard a native English speaker call it "head gremlins", so maybe that's a better translation than the literal one? Please, always feel free to correct any mistakes and typos in my posts! Sorry for the low-quality Google translations, I simply don't have to energy to translate things myself these days.
 
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On mbsstudien.se it says:
Google Translate said:
Current neurological research shows that bodily symptoms can occur even in the absence of physical pathology in the body. According to this research, the symptoms arise as a result of sensitized nerve pathways in the brain. Research has shown that these nerve pathways that cause symptoms can be retrained. Retraining these nerve pathways is exactly what this project is about. [...]

Within the framework of this project, we have developed an emotion-focused internet treatment where, above all, expressive writing and meditation are used to learn about the nerve pathways that have been sensitized and thereby reduce physical discomfort.
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@Woolie, any comments?
 
As far as I can tell, the pilot study hasn't been published yet.

I think there was a preprint, but it seems it has been withdrawn.

https://psyarxiv.com/4wx5b/

Researchgate said:
Preprint

Internet-based Emotional Awareness and Expression Therapy for Somatic Symptom Disorder - A Preliminary Efficacy Trial

March 2020

DOI: 10.31234/osf.io/4wx5b

Abstract
Background and Aims: This study investigated the feasibility of an Internet-delivered Emotional Awareness and Expression Therapy (I-EAET) for adult patients with somatic symptom disorder (SSD). Although EAET for SSD has been shown to be effective in both individual and group format using RCTs, no trial of an internet-delivered EAET exists. Therefore a preliminary, uncontrolled feasibility and efficacy trial of I-EAET for SSD was conducted.

Methods:
124 patients registered to participate, and a structured psychiatric assessment to judge suitability for the treatment was conducted for all patients. A total of 52 patients (50 women, 2 men) were included and initiated treatment. Mean age was 49.6 (SD 11.9).

The internet-based treatment protocol consisted of nine modules, which were adapted and translated from the self-help book, Unlearn your Pain by Schubiner.

Seven therapists (primarily psychology students) communicated with patients over the internet. Every therapist spent approximately 20 minutes per patient per week to answer question and giving feedback on home-work assignments.

Treatment lasted nine weeks.

Patients completed measures of somatic symptoms, depression, anxiety, trauma related symptoms, and emotional processing before treatment and again at post-treatment.

Results:
A large within-group reduction in somatic symptoms (PHQ-15) was observed (d = 1.12; 95% CI: 0.77-1.46). Small to moderate magnitude reductions in anxiety (GAD-7), depression (PHQ-9), trauma related symptoms (PCL-5), and dysfunctional emotional processing (EPS-25) occurred.

Almost one-quarter of the sample (23.1 %) achieved a 50 % or greater reduction in somatic symptoms. The treatment also significantly increased patient’s ability to take part in social and family life (Sheehan Disability Scale).

Conclusions:
I-EAET appears to be a feasible treatment for adults with SSD. Results seems similar or even larger than those obtained in RCTs of EAET delivered face-to-face. A controlled trial is needed determine the effects of I-EAET specifically, and whether this approach might be superior to other internet-delivered treatments. Research should also identify treatment responders and mechanisms of change in EAET.
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https://www.researchgate.net/public...mptom_Disorder_-_A_Preliminary_Efficacy_Trial

ETA: In case anyone who is registered on Researchgate requests and receives a full-text pdf of this article, I'd be very happy if you would send me a copy :)
 
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Snowdrop said:
Hi @mango

In the quote of one of your posts above they say current neurological research supports their theory. Do they cite their sources? And if so could you post them here?
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No, they don't cite any sources. I copied the text from this page: https://mbsstudien.se/

I, too, would like to know. I'm sure someone has already emailed the Ethical Review Authority by now, to request a copy of the ethical aproval application for this new study. Will share if/when I find out more :)
 
Snowdrop said:
Hi @mango

In the quote of one of your posts above they say current neurological research supports their theory. Do they cite their sources? And if so could you post them here?
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Somebody who contacted Maroti, to ask him about the sources for that particular quote, shared the following list:

Recommended general introductory reading: "Hidden from view" by Schubiner & Abbass.

A selection of relevant research studies:

EAET:

Yarns, B. C., Lumley, M. A., Cassidy, J. T., Steers, W. N., Osato, S., Schubiner, H., & Sultzer, D. L. (2020). Emotional awareness and expression therapy achieves greater pain reduction than cognitive behavioral therapy in older adults with chronic musculoskeletal pain: A preliminary randomized comparison trial. Pain Medicine (Malden, Mass.), doi:10.1093/pm/pnaa145

Lumley, M. A., & Schubiner, H. (2019). Emotional awareness and expression therapy for chronic pain: Rationale, principles and techniques, evidence, and critical review. Current Rheumatology Reports, 21(7), 1-8.

Lumley, M. A., & Schubiner, H. (2019). Psychological therapy for centralized pain: An integrative assessment and treatment model. Psychosomatic Medicine, 81(2), 114-124. doi:10.1097/PSY.0000000000000654

Lumley, M. A., Schubiner, H., Lockhart, N. A., Kidwell, K. M., Harte, S. E., Clauw, D. J., & Williams, D. A. (2017). Emotional awareness and expression therapy, cognitive behavioral therapy, and education for fibromyalgia: A cluster-randomized controlled trial. Pain, 158(12), 2354-2363. DOI: 10.1097/j.pain.0000000000001036

Central sensitization:

Lidbeck, J. (2016). Central sensitisering bakom svårbehandlad specifik smärta. Läkartidningen. 2016: 113: D4YA
https://lakartidningen.se/klinik-oc...tisering-bakom-svarbehandlad-specifik-smarta/

Vardeh, D., Naranjo J.F. (2017). Peripheral and Central Sensitization. In: Yong R., Nguyen M., Nelson E., Urman R., (Red.) Pain Medicine. Springer, Cham.

Woolf, C. J. (2011). Central sensitization: implications for the diagnosis and treatment of pain. Pain, 152(3 Suppl), s. 2–15.

Other:

An episode of a Swedish radio programme: Vetandets värld (March 3, 2018) ”Kroppens smärta påverkas av själens” ["The body's pain is affected by the soul's"]. Professor of clinical psychology Steven Linton talks about nerve sensitization etc: https://sverigesradio.se/sida/avsnitt/1036481?programid=412
Google Translate said:
The pain of the body is affected by the soul

20 min

Tue 13 Mar 2018 at 12.10

How much pain you have is affected by how you handle it and is treated mentally and emotionally. If healthcare took this into account, more people would feel better, according to researchers we meet in the World of Knowledge.

Much would be gained if primary care in Sweden would spend more time on the psychological and emotional parts of the problem of long-term physical pain. That is the opinion of Steven Linton, professor of clinical psychology at Örebro University.

Many in Sweden with long-term, chronic pain never get their problems sorted out in primary care. Anna-Lena has for about ten years sought care for her pain, without receiving either a cure or a diagnosis.

Psychological factors are crucial for how an individual experiences and manages their physical pain. But research from Örebro University shows that healthcare professionals often underestimate the care seekers' catastrophizing thoughts and the aggravating interplay between the physical pain and emotions such as anxiety and fear. If the care staff confirms that they understand the patient's experience, negative emotions can decrease instead of increase.

This is the second part of two in our miniseries about how long-term pain is received in care.
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(Tagging @Anna H, have you seen this?)
 
mango said:
On mbsstudien.se it says:
Current neurological research shows that bodily symptoms can occur even in the absence of physical pathology in the body. According to this research, the symptoms arise as a result of sensitized nerve pathways in the brain. Research has shown that these nerve pathways that cause symptoms can be retrained. Retraining these nerve pathways is exactly what this project is about. [...]

Within the framework of this project, we have developed an emotion-focused internet treatment where, above all, expressive writing and meditation are used to learn about the nerve pathways that have been sensitized and thereby reduce physical discomfort.
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@Woolie, any comments?
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So glad you asked, @mango! What an offensive attempt to co-opt scientific ideas to justify absolute quackery and woo!

First they say you can have "bodily symptoms" without observable physical pathology. Which tells us nothing more than the fact that disease explanations are not perfect (and who would expect them to be?). You can't turn around a negative statement like this and try and make it into some positive claim about what causes those symptoms or how to treat them.

Then they indulge in that all-too-common abuse of the concept "central sensitisation". Its a real concept, which was introduced to explain why repeated pain stimulation (to poor defenceless rats) can cause temporary changes in neurons and tissue outside of those being directly stimulated (heightened responsiveness of other neurons and pain receptors). But it can't be extended to the sorts of clinical problems they are talking about here. There may be some permanent forms of central pain sensitisation that can occur after damage to certain brain structures, but you certainly can't get them from just having a bit of pain - even chronic pain - and then thinking too negatively about it.

I think its really offensive to misuse scientific concepts in this way (although not at all uncommon).

Then it gets worse, the authors claim that we actually know that "nerve pathways" can be "retrained". It makes me furious when people appeal to brain/body mechanisms to explain what are actually behavioural phenomena. Neurons can't be retrained, and they can't benefit from psychotherapy. Only people can be retrained. Only people can benefit from psychotherapy (maybe!)
... we have developed an emotion-focused internet treatment where, above all, expressive writing and meditation are used to learn about the nerve pathways that have been sensitized and thereby reduce physical discomfort.
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What? Are they honestly trying to claim that people can cure their symptoms by meditating, writing about their feelings and reading psychoscientific bullshit? OMFG.
The internet-based treatment protocol consisted of nine modules, which were adapted and translated from the self-help book, Unlearn your Pain by Schubiner.

Seven therapists (primarily psychology students) communicated with patients over the internet. Every therapist spent approximately 20 minutes per patient per week to answer question and giving feedback on home-work assignments.
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Wow,that self-help book "Unlearn your pain" is sure to be packed with useful scientific advice. Maybe even better than "Change your life with crystals"! And the participants were in such good hands - there were Psychology students there to answer all their questions!
Results
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:
A large within-group reduction in somatic symptoms (PHQ-15) was observed (d = 1.12; 95% CI: 0.77-1.46). Small to moderate magnitude reductions in anxiety (GAD-7), depression (PHQ-9), trauma related symptoms (PCL-5), and dysfunctional emotional processing (EPS-25) occurred.

Almost one-quarter of the sample (23.1 %) achieved a 50 % or greater reduction in somatic symptoms. The treatment also significantly increased patient’s ability to take part in social and family life (Sheehan Disability Scale).
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These are pretty lukewarm results, given that theirs was a completely open-label design, with no control group. How many people would have improved spontaneously? And how many more would have just said they felt better to please the researchers? I reckon if I made up a psychic surgery intervention, and embedded it within a whole load of pseudoscientific mumbo-jumbo, I might be likely to do better than this.
mango said:
As far as I can tell, the pilot study hasn't been published yet.

I think there was a preprint, but it seems it has been withdrawn.

https://psyarxiv.com/4wx5b/


https://www.researchgate.net/public...mptom_Disorder_-_A_Preliminary_Efficacy_Trial

ETA: In case anyone who is registered on Researchgate requests and receives a full-text pdf of this article, I'd be very happy if you would send me a copy :)
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I've requested a copy of that manuscript, @mango. Will let you know if they send it.
 
Arnie Pye said:
What are the symptoms of mind-body syndrome? Having a mind and having a body? This is the stupidest name for a health issue that I have ever heard of.
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Here's from the presentation of the syndrome:
Throughout the project, the abbreviation "MBS" (in English: "mind-body syndrome") is used to denote a larger group of physical ailments, such as migraine, IBS (irritable bowel), fibromyalgia, chronic fatigue syndrome, back pain, whiplash and more. We use the term based on the fact that body and mind are closely connected in many cases of bodily ailments.

Current neurological research shows that bodily symptoms can occur even in the absence of physical pathology in the body. According to this research, the symptoms arise as a result of sensitized nerve pathways in the brain.

Research has shown that these neural pathways that cause symptoms can be relearned. Learning about these neural pathways is exactly what this project is about.
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An exclusion criteria is if your physical symptoms are related to a medical condition..
 
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