Ongoing long covid studie Sweden: Utvärdering av effekten av hjärnträningsmetoder hos long covid patienter”

MittEremltage

MittEremltage

Senior Member (Voting Rights)
Ongoing research on brain training (DNRS, Gupta program and ANS rewire) in long covid from Karolinska Institute in Stockholm Sweden. I have read the ethics review application and commenting it on my blog.

It is a retrospective study where the researchers Will study the effect of brain training (DNRS, Gupta, ANS) by reviewing medical records and symptom forms of patients with long covid who self-selected and paid for brain training and compare with people with long covid who did not choose to enter it this type of treatment.

My comments (Google translated)
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

Directly to the ethical review application (english from page 27)
https://mitteremitage.files.wordpress.com/2022/10/2021-05274-utvacc88rdering-av-effekten-av-..-.-_-ansocc88kan-_-etikprocc88vningsmyndigheten.pdf?force_download=true
 
The same methods that the researchers in the brain training study claim are risk-free made Åsa severely and long-term impaired. In today's post, she talks about her experiences of ANS rewire and Gupta program.

”Today I pat myself on the back and say how damn good I am for daring to interrupt everything, that thing that everyone else said was so good. I even gave up and sought euthanasia in Switzerland, it was that bad. I felt so humiliated when someone else had to wipe me after going to the toilet and take care of my hygiene. Waving from the edge of the bed when the children left. I lay there paralyzed and heard them eating dinner and playing. At this time I couldn't even eat. I lost 15 kg.”

Google translated post:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
 
In today's text, I try to understand what brain training means in practical terms, if the methods are digferent and if it really is something other than the Lightning Process. I am also trying to analyze how the design of the training can affect the reliability of the stories of those who have recovered and how this could affect the results of the study on long-term covid.

Google translated blogpost:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
 
@MittEremltage has provided a summary on Twitter of her latest blog post series on brain training and ME

Here is an auto translated version:

Good Friday afternoon. I thought I'd make an attempt to summarize my recent exploration into brain training research for people with #LongCovid in a thread.

I became aware of the research when a doctor told me in a health prod that she recommends DNRS and Gupta to her ME patients on the basis that there is research on long covid.

I discover that the research is ongoing and that the researcher for her part recommends the methods to people with long covid because there are such good results for Myalgic Encephalomyelitis (ME).

(While I am looking for information, I learn that the researcher, for example, calls sick people she has read about on Facebook and acts as a quality guarantor on one of the for-profit companies' websites.)

But according to the same researcher, there is no scientific evaluation of the methods. The good results thus consist of stories of miraculous recoveries from the for-profit company's marketing. As well as own clinical anecdotes about long covid

Thus, we have two doctors (one of whom is a research professor at KI) who recommend treatment by unconventional methods to patients with long covid and ME, citing anecdotal evidence of good effect.

In the ethics review application, the researcher also claims that the method has no negative effects, despite the fact that the methods have not yet been scientifically evaluated.

They don't even describe exercise-induced deterioration (PEM) as part of the disease picture, despite the fact that many with long-term covid live with the consequences of this every day and it could affect the results of the study and risk worsening the patients' health.

The brain training methods involve telling yourself (and your surroundings) that you are already healthy. That it's just one's brain being a little miswired and creating symptoms. (And do things to trigger symptoms and increase activity.)

They say that by telling yourself and others that you are already healthy, you can rewire your brain and make the symptoms go away. (The method thus makes the anecdotal evidence quite unreliable.)

The research on long covid is structured in a way that means there is a great risk that the heaviest burden of proof is placed on the test subjects' own account of their symptoms. (They are not going to do their own examinations but review medical records and ask for symptoms).

So to evaluate the method that teaches the subjects to tell themselves and everyone else that they are already healthy - you have to ask them if the symptoms remain. What could possibly go wrong?

I have described all this in more detail in 5 posts on my blog starting with this post:
 
Trish said:
It sounds very like LP. That's so disheartening that clinicians and scientists can't see how dangerous this all is.
Click to expand...

In fact it seams like Annie Hopper (founder of DNRS) participated in LP and says that it’s what healed her.

This blogpost connects the dots:
https://multiplechemicalsensitivity...course-that-annie-hopper-did-to-cure-her-mcs/

I am very concerned about what’s happening in Sweden right now. Two of the co-scientists (Fedorowski and Axelsson) meets a lot of ME-patients in their clinical work.
 
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