News from Scandinavia

It’s there if you have the direct link, but has been removed from the newspapers web format and from their fb page. LL still links to it from her own fb page.

 

I've read it now, or most of, it's a bit long.

I guess she went way to far with this one. The idea was likely to support the national competance service and the psycosomatic approach, and undermining patients voices, in her usual way. That's what the main portion of the content is about.

But she effectivly argued that all medical knowledge about ME is wrong, untrusthworthy or sketchy - don't listen to your doctor, call me and do my "stress management course" (previously known as LP), or you will loose hope and risk ending your life. Even warning people from contacting the health services - "doctors are making people sick by telling them they are sick". But no worries, she can make them recover.

It's not direct quotes,, but that's how the piece reads, to me. You can't do that. It's prohibited by law, alternative therapauts can't tell people to don't go see your doctor or don't take medical advice. They can definitly not scare people away from doctors by saying "doctors will make you sick" - come to me, I can heal you.

Added to that, the unethical use of a tragic patients story.

I would be very surprised if this piece is put back online.

 

Oh, according to Landmarks twitter, it was published in the paper version of Dagbladet today.

So it's out there in the public domain. Likely hurting her more than us? It's not getting much attention on twitter at least. Link hidden - here - since norwegians tend to get high blood pressure seeing her red dress. ;-)

 

Link still active, but now says:

"This article is deleted".

https://www.dagbladet.no/kultur/denne-artikkelen-er-slettet/70698445

Edit: Was refering to the content itself, now see even the url have "this-article-is-deleted". Both the headline and content is also gone, replaced with only that one line.

 

Spotted this on Twitter, is there an official announcement anywhere on this?
https://twitter.com/user/status/1091750503665545217

 

There is not much information here - but it's the page for the case at 'Folketinget' (=parliament?), and the announcements of dates

https://translate.google.com/translate?um=1&ie=UTF-8&hl=no&client=tw-ob&sl=da&tl=en&u=https://www.ft.dk/samling/20181/forespoergsel/f28/index.htm?fbclid=IwAR2UF0BJledGuIz-7O2TwXuChhNG7gU_owxNhxUGobG3_GaZX6jRl4pVscM

https://www.ft.dk/samling/20181/for...z-7O2TwXuChhNG7gU_owxNhxUGobG3_GaZX6jRl4pVscM


The danish ME associations announcement:

 

And I'm not sure if this is in the thread already, but I belive it's one of the news stories leading up to the 'folketing' discussion.

He is the father of a severe ME-patient, and it made an impact on the politicians, and how they where denied even basic help as a bath stool, that don't cost much at all. It focuses on how there is no routh into the health system for ME-patients in Denmark, to get access to even the little help that after all is available.

There are comments from several politicians. So happy this is happening in Denmark!

https://translate.google.com/transl...zH31WX_d5mWdNFCjwRdvtyHk3-RAmmaI-PcOHM&anno=2

https://www.ugeavisen-esbjerg.dk/es...ULVTgmLzH31WX_d5mWdNFCjwRdvtyHk3-RAmmaI-PcOHM

 

Thanks @inox . A new thread has been started for the event itself, https://s4me.info/threads/me-debate-in-danish-parliament-march-12-2019.7988/

 

There's another article in the same paper on that same meeting reporting some of what the father of the ME patient said, also a doctor's comments.

I was a bit concerned that the first article (the one @inox quoted above) talked a lot about there supposedly being treatments available in other countries that Danish patients couldn't access. What treatments?! In the second article it's clear they were talking about symptom relief and contrasting that with Per Fink's approach (without naming him).

https://www.ugeavisen-esbjerg.dk/es...ise-Jeg-tror-vi-gjorde-indtryk/artikel/381311

https://translate.google.com/transl...ise-Jeg-tror-vi-gjorde-indtryk/artikel/381311

 

A lot of Danish patients think that treatment is available abroad, or that the situation is significantly better in other countries like Norway. Which sadly, as we all know isn't the case. It's very unfortunate and does not help the cause.

 

The danes are keeping up the pressure

Article about ME, Cochrane and health recommendations (they're not giving in quite yet) - google english - danish

 

The Norwegian ME Association has a short survey about ME and illness progression. Anyone in Norway with ME, who has had ME or is under assessment for ME are invited to participate.

More information and link to survey: Norges ME-forening - Spørreundersøkelse om sykdomsforløp

 

Trude Schei, the norwegian ME association, had a very good reply to this, about a week after. Only in the paper version unfortunately.

For those reading norwegian - link to the public facebook-page 'ME-nytt' (='ME news') sharing a facsimile

She points out how it's no longer allowed to use patients stories in the marketing of alternative treatments, but they instead get them printed in newspaper under cover of a chronicle - without declaring any COI. And how this mis-information makes it harder to be an ME-patient, having to live with not just the illness, but myths and judgement from others. She also references five large user surveys by the ME association, the IOM-report and the US changed their treatment recommandations - ends with describing how these myths affects patients, who are often denied even basic care or a wheelchair when they can't walk, because 'it's good for you to try'.


It's not the first time this is pointed out of course, but this is very well written and to the point. Also, the timing seems right. There have been no letters in support of Landmark published (so far) - that is a first.

Edit: Fixed link (I hope.... )

 

Link not working

 

Oups! Sorry about that - how about this? (It's at 'ME nytt')

 

That works! Thanks

ETA: And you are right - it's a great piece!

 

The Norwegian organisation The ME parents has sent a letter to the board of Oslo university hospital regarding the need for a new national competence service for children and adolescents with ME. The competence service is currently being evaluated.
The ME parents has published a blog post where they share the main points they are raising in the letter.

ME-foreldrene - Behov for ny nasjonal kompetansetjeneste for ME
google translation - Need for a new national competence service for ME

 

In 2015, a bunch of Swedish BPS-people started a study where they wanted to test Acceptance & Commitment Therapy on pwME. From the information given in the application for ethical approval, it's clear that the aim is to get the participants to increase their activity. The study is so far called "Prevalens och påverkan av psykoneuroimmunologiska faktorer vid Myalgisk encefalomyelit/Kroniskt trötthetssyndrom -behandlingseffekt av Acceptance & Commitment Therapy"

Due to changes in healthcare for pwME in Stockholm during the last couple of years, the venue for recruiting participants has changes and therefore, this study has been discussed a lot among Swedish people with ME lately. As a consequence, this study is now discussed in a series of entries on the Swedish blog Pace Inspector. Here's the first part, which describes how this study is designed to only include people with the mildes form of ME, since it demands a lot from participants. Still, the people behind the study aim at using this sample as a base of subgrouping people with ME.

https://pacegranskaren.wordpress.co...vensk-beteendestudie-av-me-sjuka-del-1-urval/

 

Hello Scandinavians (particularly Norwegians),

Have you heard anything about the publication of the F & M Cyclophosphamide study? Seems to be taking a while.

Also do you think it might be possible for someone to contact Haukeland to find out what happened to the ME/CFS patients who were not in the study but received cyclophosphamide and improved and reported the results to Haukeland (how long did the improvement last,etc.)?


Thank you.

 

Here's part two in the series of blog posts about the Swedish BPS study mentioned above. This post describes how the the participants is subjected to fairly high risks of PEM but are told that the tests and procedures are safe.

https://pacegranskaren.wordpress.co...ensk-beteendestudie-av-me-sjuka-del-2-risker/