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The Mind-Body Syndrome Study (2019) Maroti et al
- Thread starter mango
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mango
Senior Member (Voting Rights)
Kalliope
Senior Member (Voting Rights)
I'm sad to see that Bragée Rehab (home of Bragée ME-center) are endorsing this study. I wonder if they will be actively encouraging their ME patients to take part, besides this post on Facebook? This is a big worry because of Maroti's apparent lack of understanding of our disease, and his habit of supporting CBT/GET, PACE etc, which has caused lots of harm to pwME
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.
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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mango
Senior Member (Voting Rights)
mango
Senior Member (Voting Rights)
Hmm... Well, earlier this year Bragée ME-center hired bps proponent Gunnar Olsson to work for them and to run his bps ACT study (gradually increased activity regardless of symptoms, changing unhelpful beliefs and avoidance behaviours etc) there, using their ME patients.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.
Olsson has collaborated closely with bps proponent Indre Bileviciute Ljungar over the years on several ME studies, as well as Rickard Wicksell (who also has published research on functional disorders, which according to them includes ME, together with Per Fink et al) and Daniel Maroti among others. Ljungar is the medical expert on the MBS study, according to their website.
Bragée ME-center still claims to have a biomedical approach, but their actions and choices keep telling a very different story
I just wish they would be honest and transparent.ETA links to the ACT study threads: here and here.
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rvallee
Senior Member (Voting Rights)
To say that this does not inspire confidence would be an understatement. This is such pure quackery it could almost serve as a Turing test, or maybe better named as a Goop test where anyone who thinks this is credible is forever barred from any field of science as a precaution.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.
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.
Kalliope
Senior Member (Voting Rights)
Agree. There's no golden mean here. They must take a look at the evidence, listen to the patients and make a choice.Bragée ME-center still claims to have a biomedical approach, but their actions and choices keep telling a very different story
mango
Senior Member (Voting Rights)
Very "interesting" comment... Should be easy enough for Bragée to bring this to KI's attention, if they wanted to, especially seeing that one of KI's bps ME researchers is now working for and doing bps research at Bragée ME-center as well...
Why would Bragée even hire Olsson in the first place, if they didn't believe in his work? They can't be unaware of the bps ME research Olsson has done together with these bps people, and their history working together on the heavily criticised bps ME/CFS Project at Danderyd etc.
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mango
Senior Member (Voting Rights)
Personally, I believe they made that choice a very long time ago
If you look at their actions and choices from when they first opened the center until today, it paints a pretty clear picture... Same if you look at how they talk about us, compared to what they say directly to us.
Anna H
Senior Member (Voting Rights)
Hi everyone!
This is my first post. Although I have been reading and following discussions here for a while with much interest , I have been too ill to comment (to be honest mostly a bit too shy)
.
I have aquired the application made to the Swedish Ethical Review Authority for the MBS-study. The application is in Swedish but the research protocol further down is in English. I have not read it properly myself yet, but it seems to be BPS-research at its worst!
This is my first post. Although I have been reading and following discussions here for a while with much interest , I have been too ill to comment (to be honest mostly a bit too shy)
.I have aquired the application made to the Swedish Ethical Review Authority for the MBS-study. The application is in Swedish but the research protocol further down is in English. I have not read it properly myself yet, but it seems to be BPS-research at its worst!
Ebb Tide
Senior Member (Voting Rights)
Welcome Anna. I've only been a member for few months, after following for some time before that. I don't manage to post much, but really appreciate the community support, and all the information and discussions, as well as the more fun/social threads. I hope you enjoy being here.
Arnie Pye
Senior Member (Voting Rights)
I often think that a motivation for the funding of some health or disease related research is to thin the herd. The rich seem to be panicking that they might not be able to fly to Davos or to private islands in the Caribbean or elsewhere any more so they want to kill us off at minimum cost without actually having to pull a trigger.
Anna H
Senior Member (Voting Rights)
Thank you @Ebb Tide!
Yes, I appreciate those things as well.
I really enjoy hanging out here.
So many friendly people and so much brilliance, knowledge, compassion and wit in one place - what more could you wish for?!
Well, maybe some more energy and a cure for ME......
Anna H
Senior Member (Voting Rights)
Here is an excerpt from the ethics approval application, an abstract describing the study:
(Translated to English with google translate, with major errors corrected by me)
"Emotionally focused psychodynamic writing therapy for body syndrome
Patients with body disease (English: Somatic symptom disorder; SSD) have one or more bodily symptom such as headache, stomach ache or pronounced fatigue that they devote a lot of time and energy dealing with (DSM-5; American Psychiatric Association, 2013). Patients often describe anxiety and anxiety about the bodily symptoms they have and are seeking repeated care. The hassles can be long-lasting, stressful and do not pass.
Psychological treatment with cognitive behavioral therapy (CBT) is one of the most researched treatment options for body syndrome. However, the effects of CBT are consistently worse than CBT for many other conditions. The need for development of improved treatment methods for the patient group body syndrome is thus great.
Recent research has shown that people with body syndrome both have a reduced ability to understand, process and express feelings. Furthermore, it is common for these patients to have been involved in traumatic life events.
It has been proposed as an explanation that existing treatments have a limited effect on emotional processing and traumatic life events are not adequately addressed.
Intensive short-term dynamic psychotherapy (ISTDP) is a treatment method that is specially focused on emotional processing and attachment-related trauma. The idea behind ISTDP is that body syndromes can be aggravated or maintained by unresolved stressful, traumatic and conflicting emotional experiences. There is promising research support for ISTDP treatment of body syndrome. Another technique that has been shown to be effective in the treatment
of body syndrome is writing therapy, which focuses on traumatic life events, so-called Expressive Writing (EW).
The project described in this application aims to test an internet-based psychological treatment for body syndrome EEW-ISTDP, based on ISTDP and with therapeutic elements. There are previously implemented studies on emotion-focused psychodynamic treatment via the Internet that have shown good results, but there are no studies that directly address body syndromes and they also do not involve writing therapeutic elements.
In a pilot study, we will develop an Internet-based treatment manual for SSD, based on ISTDP along with emotional writing (EEW-ISTDP). The treatment manual will primarily be based on Howard Schubiner's book "Unlearn your pain". The book consists of a thorough psychoeducation around the relationship between psychological factors (thought, emotion, action) and bodily symptoms, followed by ISTDP- inspired emotional writing exercises to be performed daily. The effectiveness of the treatment manual is intended to be tested in a pilot treatment study.
A secure web platform (KI e-Health Core Facility) will be used to provide treatment over Internet. In the spring of 2020, we will produce the treatment manual based on the book "Unlearn your pain", and modify the web platform to fit the treatment's focus on write therapy. Then, in the fall of 2020, we will include 20 patients with SSD to participate in the treatment for eight weeks via the Internet. An in-group design will be used.
Self-assessment forms of symptom levels and change mechanisms (described above) will be used weekly. Feedback on content, process and potential problems during treatment will be collected with the help of surveys and written reviews. Specific statistical methods, so-called Linear mixed models will be used for explorative purposes as changes occur over time in symptoms and processes.
Recruitment to the studies will primarily be done from a number of specialist clinics in the Stockholm County Council, such as specialist clinics for pain problems and gastroenterology. The project's medical expert Indre Ljungar has through her long experience of working with patients with SSD and similar disorders very good contacts and great insight into where in the region these patients are found.
In summary, the project is an initial attempt to develop a new treatment option EEW-ISTDP for patients with body syndrome and to map and first operate the mechanisms in a set that has not been done earlier. We hope this will lead to both more effective treatments and a new understanding of the problems of body syndrome."
(Translated to English with google translate, with major errors corrected by me)
"Emotionally focused psychodynamic writing therapy for body syndrome
Patients with body disease (English: Somatic symptom disorder; SSD) have one or more bodily symptom such as headache, stomach ache or pronounced fatigue that they devote a lot of time and energy dealing with (DSM-5; American Psychiatric Association, 2013). Patients often describe anxiety and anxiety about the bodily symptoms they have and are seeking repeated care. The hassles can be long-lasting, stressful and do not pass.
Psychological treatment with cognitive behavioral therapy (CBT) is one of the most researched treatment options for body syndrome. However, the effects of CBT are consistently worse than CBT for many other conditions. The need for development of improved treatment methods for the patient group body syndrome is thus great.
Recent research has shown that people with body syndrome both have a reduced ability to understand, process and express feelings. Furthermore, it is common for these patients to have been involved in traumatic life events.
It has been proposed as an explanation that existing treatments have a limited effect on emotional processing and traumatic life events are not adequately addressed.
Intensive short-term dynamic psychotherapy (ISTDP) is a treatment method that is specially focused on emotional processing and attachment-related trauma. The idea behind ISTDP is that body syndromes can be aggravated or maintained by unresolved stressful, traumatic and conflicting emotional experiences. There is promising research support for ISTDP treatment of body syndrome. Another technique that has been shown to be effective in the treatment
of body syndrome is writing therapy, which focuses on traumatic life events, so-called Expressive Writing (EW).
The project described in this application aims to test an internet-based psychological treatment for body syndrome EEW-ISTDP, based on ISTDP and with therapeutic elements. There are previously implemented studies on emotion-focused psychodynamic treatment via the Internet that have shown good results, but there are no studies that directly address body syndromes and they also do not involve writing therapeutic elements.
In a pilot study, we will develop an Internet-based treatment manual for SSD, based on ISTDP along with emotional writing (EEW-ISTDP). The treatment manual will primarily be based on Howard Schubiner's book "Unlearn your pain". The book consists of a thorough psychoeducation around the relationship between psychological factors (thought, emotion, action) and bodily symptoms, followed by ISTDP- inspired emotional writing exercises to be performed daily. The effectiveness of the treatment manual is intended to be tested in a pilot treatment study.
A secure web platform (KI e-Health Core Facility) will be used to provide treatment over Internet. In the spring of 2020, we will produce the treatment manual based on the book "Unlearn your pain", and modify the web platform to fit the treatment's focus on write therapy. Then, in the fall of 2020, we will include 20 patients with SSD to participate in the treatment for eight weeks via the Internet. An in-group design will be used.
Self-assessment forms of symptom levels and change mechanisms (described above) will be used weekly. Feedback on content, process and potential problems during treatment will be collected with the help of surveys and written reviews. Specific statistical methods, so-called Linear mixed models will be used for explorative purposes as changes occur over time in symptoms and processes.
Recruitment to the studies will primarily be done from a number of specialist clinics in the Stockholm County Council, such as specialist clinics for pain problems and gastroenterology. The project's medical expert Indre Ljungar has through her long experience of working with patients with SSD and similar disorders very good contacts and great insight into where in the region these patients are found.
In summary, the project is an initial attempt to develop a new treatment option EEW-ISTDP for patients with body syndrome and to map and first operate the mechanisms in a set that has not been done earlier. We hope this will lead to both more effective treatments and a new understanding of the problems of body syndrome."
rvallee
Senior Member (Voting Rights)
This is just sad. I have no words here. This makes bottom-of-the-barrel look good.
fossil
Senior Member (Voting Rights)
Schubiner again. He's involved with the Curable app. His views on ME/CFS,
https://www.s4me.info/posts/122911/
ladycatlover
Senior Member (Voting Rights)
CBT is one of the most researched treatments, but it doesn't work well for this condition. So we're going to chuck a load of money away to try and fiddle around the edges of a treatment that doesn't work instead of trying to find something that DOES work. Hmmm.
feeb
Senior Member (Voting Rights)
"The bastards don't want to get better!"
Anna H
Senior Member (Voting Rights)
The board of the Swedish patient organisation, RME, has made a statement on FB regarding the BMS-study.
In the statement they reject the idea that ME/CFS can be included in the concept of BMS, Body Mind Syndrome, SSD, Somatic Symptom Disorder or MUS, Medically Unexplained Symptoms, and say that current research show ME/CFS to be a chronic, serious multisystem disease that affects the nervous system, the immune system and energy production.
Therefore patients with ME/CFS should not be considered for this study.
The board further recommends pwME with an interest in this study to thouroghly read RMEs advice about participating in research studies before signing up for this, or any other study.
https://m.facebook.com/story/graphq...fSTM3MzQ4MTg3OTM1NTcwNDoyNDU0NTI2MjIxMjUxMjQ5
In the statement they reject the idea that ME/CFS can be included in the concept of BMS, Body Mind Syndrome, SSD, Somatic Symptom Disorder or MUS, Medically Unexplained Symptoms, and say that current research show ME/CFS to be a chronic, serious multisystem disease that affects the nervous system, the immune system and energy production.
Therefore patients with ME/CFS should not be considered for this study.
The board further recommends pwME with an interest in this study to thouroghly read RMEs advice about participating in research studies before signing up for this, or any other study.
https://m.facebook.com/story/graphq...fSTM3MzQ4MTg3OTM1NTcwNDoyNDU0NTI2MjIxMjUxMjQ5