News from Scandinavia

Of course the biggest news in Scandinavia is ABBA are getting back together..........

 

There will be a documentary about ME on Norwegian television (TV2) May 23. 21.40. It is called De Bortgjemte (The Hidden Ones).
The documentary has followed the research to Fluge and Mella and some of their patients for two years.

The documentary has an Instagram profile (currently with only one picture).

 

#MillionsMissing press release by RME (the Swedish ME Association), published today:

http://www.mynewsdesk.com/se/pressreleases/me-sjuka-syns-med-hjaelp-av-sina-tomma-skor-2499800

 

Excellent letter-to-the-editor by severe ME-patient in a local newspaper in Norway.

Agnete Skrede i Fjordingen: Den internasjonale ME-dagen 12. mai
google translation: The international ME-day 12th of May

 

One of the biggest podcasts in Norway, Tusvik & Tønne, is a comedy podcast. They're known to be quite politically incorrect, and occasionally joke about ME. But out of nowhere today they told their listeners that 12th of May is the international awareness day for ME, that this is a disease they are so scared to get that they HAVE to joke about it and that more research is important.
For those who want to listen, it is during the last 6 minutes of their latest podcast.

Also, a popular blogger called Trine Grung highlighted MillionsMissing and 12th of May in the blogpost VIKTIG fokus på ME! Håper du deler og engasjerer deg!
Google translation: Important focus on ME. Please share and engage!

Encouraging and welcome signs of a mainstreaming of ME-activism.

 

Allas: Camilla, ill with ME, chose to end her life
https://www.allas.se/me-sjuka-camilla-valde-att-avsluta-sitt-liv/

Hemmets: Camilla, ill with ME, chose to end her life
https://www.hemmets.se/me-sjuka-camilla-valde-att-avsluta-sitt-liv/

 

Sundsvalls Tidning: Därför ställs tomma skor ut i Sundsvall i en stor aktion
"This is why empty shoes are displayed in Sundsvall during a big action"

https://www.st.nu/vasternorrland/sundsvall/darfor-stalls-tomma-skor-ut-i-sundsvall-i-en-stor-aktion

 

This is very sad, Camilla was a great contributor both in our small rtx-crowd and in Swedish media. She did a lot to bring awareness to this disease, even when she suffered immensely. My condolences to her family.

 

Good article, all the right stuff came up. Can’t read the entire thing today so no guarantee that nothing is wrong with it.

 

Excellent editorial from the Swedish Aftonbladet, whom lately has had several articles on ME (see recent posts on this thread by @mango )
It is a strong support to ME-patients and to proper welfare for this patient group.

For some reason I was not able to google translate this. Perhaps others can figure it out?

Aftonbladet: ME-sjuka ska inte nekas sjukpenning

It is not about a pretend disease or trendy diagnosis. The World Health Organization WHO has classified ME / CFS as a neurological disease that can affect women but also men and children among all groups and in all communities around the world. Of course society should support those who are barely able to keep living.

Edit To Add:
Google translation (thanks @Andy !)
ME-patients should not be denied sickness benefits

 

@Kalliope , are we allowed to post full articles here? I´m ready to delete when you have copied what you´d need

 

No, not if we are trying to keep to the copyright laws.

This should work? https://bit.ly/2rx9tU9

 

Thank you @Helen for the translation

I am not sure how to make a google translation link from the editorial, but usually someone on the forum can help when I'm stuck.

I'm under the impression that with a google translation link internet's wonderful ways somehow ensures that also the original site gets traffic..

 

It does for a second, and then an error message appears (at least for me).

 

How about https://bit.ly/2KcvApB?

 

Yes! This one works!

 

That's just weird, Yandex just uses Google Translate anyway But glad it works.

 

Thanks everybody. Though, the automatic translation contains some really weird expression. I now delete my post with the articles.

edit: Maybe we should delete some posts to "clean up" the thread

 

The situation is horrific, yes, absolutely. But it's simply not true that Försäkringskassan (FK, the Swedish Social Insurance Agency) consistently denies all persons with the diagnosis ME sickness benefit. Lots and lots of people diagnosed with ME actually get sickness benefit or sickness compensation. It's true that a lot of people's applications are being denied, but it's not true that it's a new thing, and it's not only people diagnosed with ME, not only women.

It's mainly about FK aiming to spend less money, about creating better-looking statistics. FK's interpretations of the rules/directives have been getting stricter and stricter over the years and that affects everyone, regardless of diagnosis. The main thing that has been tightened up even more lately is the demand for "objective findings", as they call it (they are misusing the term hugely, disregarding plenty of actual objective evidence and often totally ignoring both common sense, scientific evidence and the objective findings that are written in the doctor's notes etc); this is not specific to ME.

Personally, I think it's unhelpful to single out pwME when talking about greater systematic issues like these. I feel that it subtly and unintentionally strengthens the doubts and prejudices in people's minds about ME and pwME.

So far there are no official guidelines for ME, neither clinical guidlines nor social security related ones. And in any case, it's not the diagnosis that ultimately determines FK's decisions -- according to their rules it's (supposedly) all about the individual and their ability to work. FK's PR material infamously says "We don't ask what diagnosis your patient has, but we want to know if it's possible that there is work that the patient can do despite their illness or injury."

Also, "However, after long rehabilitation the patients can get a bit better". Really? What effective rehab is there? Well enough to return to work? To my mind, that's like agreeing with some of FK's most commonly used arguments when denying applications: that ME "isn't a long-term condition" and that the pwME could get back to work with proper rehab (CBT/GET is the only "evidence-based" one available, as we all know...). Why would you write something like that in an opinion piece like this, especially without the evidence to support it?

Having said that, I'm very very grateful to the writer for actually caring enough to write this piece I'm sorry if I'm being overly negative/critical.