Sweden: ME clinic and Masano Health digital rehab for ME/CFS

Me and a friend have reported the Västerbotten region to the Chancellor of Justice (JK) because of how they handle public documents.

I hope the Google translation of this blog is understandable:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

Failure and breakdown. Yes, those are words used in the local newspaper Folkbladet today in a longer report about ME care in Västerbotten.

The journalist has had contact with ME sufferers who talk about staff with a lack of knowledge about ME, frivolous investigations, none or harmful treatment and a lack of home visits for the most seriously ill. The report also sheds light on the suspected corruption that led to a police investigation and the suspected ethics review offense that is being investigated by ÖNEP.

The region responds to the criticism primarily through operations manager Gabriella Eikelboom. In short, it can be summed up as her defending al of it and some things she says are remarkable.

The article:
https://www.folkbladet.nu/2023-03-1...gen-upplevde-att-de-hade-valdigt-lite-kunskap

My analysis in a blogpost:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

This is massive!! So good to see this in a newspaper! What an absolute dumpster fire

They say in the article that the project probably won't continue, probably will be cancelled. I desperately hope so!

It has already caused so much harm, would be an absolute catastrophe if this "model" were to be rolled out all across the country...

Brilliant brillant work, @MittEremltage! Thank you, thank you, thank you, for everything

 

Thank you! ❤️ It is disgusting. Let’s hope ÖNEP ”sätter ner foten” heavily! Soon.

 

Good News! The Chancellor of Justice has started an inspection.

Read more in my blog post (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

Amazing news!

 

Polisanmäld läkare anklagar regiondirektören för kränkning: ”Utsett mig som syndabock”
https://www.folkbladet.nu/2023-07-0...-for-krankning-utsett-mig-som-syndabock-0e4e9

Very long article, lots of details on some of the wrongs that have been committed. I think the best words to summarise it all would be "dumpster fire"...

Good on the blogger for speaking truth to power! Be brave, and be gloriously, defiantly noncompliant, as Jennie Spotila once said

It reminds me of something Edward Snowden said in an interview a while back: "The reality is, resistance starts when enough people become uncomfortable". Thank you so much, @MittEremltage and team, for making people uncomfortable

 

Do read the comments on Folkbladet Västerbotten's Facebook post. They bring up some really important points about what's missing in the article.

 

The Ethics Review Appeals Board (Överklagandenämnden för etikprövning ÖNEP) decided to press charges against the Västerbotten ME project ”Tänk rätt från början”. They state that the project was research without ethical permission - not healthcare. The case will now be further investigated by police and prosecutor.

Link to ÖNEP:
https://www.onep.se/media/3061/o-neps-beslut-t12-2022.pdf

A short summary on my blog (Google translated)
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

Paywalled news articles:

Regionen gjorde fel – ärendet går till åklagare
https://www.vk.se/2023-11-01/regionen-gjorde-fel-arendet-gar-till-aklagare-edccd

ME-projekt var forskning utan tillstånd – region anmäls
https://www.dagensmedicin.se/alla-n...t-var-forskning-utan-tillstand-region-anmals/

 

One more paywalled news article:

Folkbladet: Regionen saknade tillstånd för forskning om ME-sjuka – ärendet går till åklagare
https://www.folkbladet.nu/2023-11-0...g-om-me-sjuka-arendet-gar-till-aklagare-7c958

 

Läkartidningen also reports about ÖNEPs decision.

Swedish:
https://lakartidningen.se/aktuellt/...otten-efter-forskningsprojekt-utan-tillstand/

English (Google translate)
https://lakartidningen-se.translate..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

Good News! Today Läkartidningen reports that the police/prosecutor have opened an investigation for suspected crime against the ”law of ethics” (etikprövningslagen).

”In October, a project on digital ME rehabilitation in Region Västerbotten was prosecuted because it lacked an ethics review permit. Prosecutors have now decided to open a preliminary investigation. »I have decided to initiate a preliminary investigation as there is reasonable reason to assume that a crime has been committed,« states prosecutor Andreas Nyberg for Läkartidningen.”

Open article (Google translated):
https://lakartidningen-se.translate..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

Finally!

 

Lokal newspaper writes about the ongoing investigation.

Paywalled article:
https://www.vk.se/2024-03-17/brottsmisstanke-aklagare-utreder-regionens-me-projekt-d9ca1

Short summery by me (Google translated):
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

So good to hear that they keep moving forward with this!