Dr Björn Bragée and the Bragée ME-center in Stockholm, Sweden

Moved from the News from Scandinavia thread

(This isn't news, but I wasn't sure where else to put it. Sorry. Felt important to document.)

This is from a post by Dr Björn Bragée of Bragée ME-center in Stockholm, Sweden. It was published in March 2021, in a public Facebook group on precision health, hosted by Vinnova (Sweden’s innovation agency).

Some information about the project is available on Vinnova's website:
https://www.vinnova.se/en/news/2021/03/accurate-efforts-with-the-help-of-precision-health/

 

oh dear..

 

Some bragging by Dr Bragée on Facebook last week, about their short waiting lists:

Code:

https://www.facebook.com/brageerehab/posts/pfbid02jontLbLAbwCCiZhiWjejSJSca4XNZrwbmMjS5Hovxf34WLDSeR75EhvuUoRRB4W5l

To me it leaves a bad taste in my mouth -- especially when contrasting what he is saying with what some of their ME patients are sharing on social media about their actual experiences of the clinic...

Do read the comments and Bragée's responses to them as well, to get a wider picture.

Here's one comment that I feel sums up some of the most important points quite wel.

 

In an article published 29 September 2022, Bragée argues that there is a proven link between ME and difficult childhood experiences.

Svåra livsupplevelser: Många har aldrig berättat för någon
https://www.bragee.se/svara-upplevelser

(my bolding)

 

For their own data on ME patients they are referring to the questionnaires you are required to fill in before you know if they will you accept you as a patient or not, before your first visit at the clinic. They are the basis for most of their research, it seems?

 

This is written by Britt Bragée who is the wife to Björn Bragée. She's a physiotherapist and has worked with psychosomatic issues for many years.
They published a book together in 1999 titled 'The body's wrath: a book about pain'.

Google translated presentation of the book (here it says she's a nurse..):

Many people experience long-term pain either as a result of illness or injury, or without really knowing the cause, e.g. joint and muscle pain. Conditions such as back pain, fibromyalgia, headache, abdominal pain, rheumatism, and pain resulting from cancer are some of the different forms of pain that are treated. Pain is the body's way of expressing the mind, say the authors. They deliberately choose to talk about long-term pain instead of chronic pain. The pain can creep in and become a disease in itself. The authors follow the pain process, explain and give suggestions for treatment. They describe what happens in the body and soul of those who are forced to live with long-term pain. The authors are nurses and doctors and together they founded the "Pain Clinic Kronan" in Stockholm.

 

There's a reference in the article concerning ME/CFS on a thesis by Canadian Alysha Renouf from 2020 titled: Chronic Fatigue Syndrome: Holistic Understanding and the Impact of Social Support on Distress, 2020. The thesis has not been discussed on the forum.

 

Björn Bragée on Facebook (auto-translate):

"Tomorrow morning at 10.30, we'll be releasing an interesting research story on TV4's morning news, alongside the publication of the article in a prestigious journal. Don't want to say much more than that together with Linköping University (Department of Cell Biology), Bragée Me-Center and Karolinska Institutet, we have had a study for more than a year where we studied the reaction to Covid-19 and found new mechanisms that may shed light on why people get so tired and energy-deprived in ME/CFS.

It will probably be on TV4 play too, and please comment there and on bragee rehab facebook, and I'll try to respond after lunch when I'm back. Please spread the word, it's exciting news, we in the research team think.
/Dr Björn Bragée"

 

That isn't a very promising statement given the hallmark aspect of the disease is PEM and not tiredness.

 

I made a new thread for the study/article here:

Saliva antibody-fingerprint of reactivated latent viruses after mild/asymptomatic COVID-19 is unique in patients with myalgic-encephalomyelitis/chronic fatigue syndrome, 2022, Apostolou et al

 

In the TV interview this morning, Björn Bragée described ME as "a tiredness disease after infection", and the symptoms as "mostly tiredness". No mention of PEM (hugely annoying and disappointing, a severely wasted opportunity to educate!). However, besides that, it was not a bad interview.

I actually started counting the number of times they said the word "tiredness", but I lost count after I reached 8?

(Edited to clarify that I do feel that not highlighting PEM is really bad.)

 

Björn and Britt Bragée are publishing an online "pain course" in 7 parts, free to watch on Youtube:

https://www.youtube.com/@bjornochbritt

(I'm unable to watch this myself at the moment because of PEM, but according to comments on social media it's apparently similar to DNRS?)

 

Bragée Clinics have made the decision to close down ME Center, according to Björn Bragée on Facebook.

More info in this forum thread:
https://www.s4me.info/threads/swede...-the-bragée-me-center-2023.32049/#post-477338

 

The Swedish patient organisation RME has posted a video about neurological symptoms.

I find this bit (ie their explanation for these symptoms) problematic:

 

“According to research, a phenomenon called central sensitisation is characteristic of ME, meaning that the spinal cord reacts in a hypersensitive way.”

We don’t yet have any demonstration that ‘central sensitisation’ exists as a phenomenon, we have no evidence that it is relevant to ME or even that the spinal cord is somehow differentially impacted to the rest of the CNS in ME.

Do people in other fields feel able to so freely present hypothetical conjecture as established fact? Perhaps it is no loss that the Bragée ME Centre is closing?

 

I think the opening remark 'according to research..' gives away the fact that the speaker doesn't actually know what they are talking about - assuming they can talk to the even more ignorant.

 

The Swedish patient organisation RME has posted another video by Bragée ME-center. Björn Bragée talks about pain and ME.