News from Scandinavia

You know there seems to be a window for some therapy here. I find it disturbing when there are people out there who get excited about the idea of punishing people whose crime is to be in extreme pain and then take steps to alleviate it.

And they are often loud (and IMO irrational) voices for condemning those that act and stir up others to condemn also. Could this be what mass hysteria looks like?

 

Mottagning för ME-patienter dröjer – politiker i Västerbotten kritisk
https://www.svt.se/nyheter/lokalt/v...drojer-regionpolitiker-i-vasterbotten-kritisk

 

Press release by #MEvårdsaknas:

ME-sjuka i protest mot obefintlig vård! [People with ME in protest of non-existent care!]
https://www.mynewsdesk.com/se/numme...-sjuka-i-protest-mot-obefintlig-vaard-2942429

Petition:
https://www.mittskifte.org/petition...isk-encefalomyelit-me-varda-vard-mevardsaknas

https://twitter.com/user/status/1194277105665822722

 

Today was the last day of the Nordingrå trial. The sentence is expected to be announced on Monday November 18.

Most of the news articles are behind paywalls.

According to one article, the main reason the procecutor gives for demanding a 2 year prison sentence for manslaughter is an earlier judicial decision from the 1970s(!) when a woman was sentenced to one year in prison for having helped a man with MS end his own life.

https://www.svt.se/nyheter/lokalt/vasternorrland/aklagaren-yrkar-pa-tva-ar-fangelse-for-maken

https://www.svt.se/nyheter/lokalt/v...hartighetsdrap-det-har-varit-en-jattetuff-tid

I haven't been able to follow the media reports myself, but one thing I find "interesting" is something that several people have mentioned on social media: apparently the procecutor focused her closing argument very heavily on whether the woman had ME or not. A lot of the discussions during the trial also seem to have been focused on the diagnosis itself. Why focus on the diagnosis instead of the actual, immense, long-term and documented suffering including symptoms and functional impairment; exacerbated and maintained by lack of medical care, lack of effective treatments, lack of practical and social support etc?

I've wondered the same thing many times about the court cases where people with ME are appealing against the Social Insurance Agency's decisions to deny or cancel people's sickness payments. Their own rules say (paraphrased) that it doesn't matter what kind of injury or illness you are suffering from, the only thing that matters is your ability to work. So why does the diagnosis itself suddenly become so important, just because the person happens to have ME? It doesn't make any sense. Stigma, prejudice and ignorance continue to cause harm

I really appreciated what Sten Helmfrid wrote on Twitter the other day:

https://twitter.com/user/status/1194000423587332096

 

Time is a damn circle because some people insist at beating it into that shape.

You'd think the smart people whose job it is to help other people would be careful about not repeating the exact same mistakes in the exact same way and yet here we are, with the same consequences from those past mistakes and always the same response from those responsible that they disagree that it's similar because it doesn't feel similar.

What a freaking embarrassment this all is. Medicine seems to work the same as politics, technology changes around it and makes it seem like it progresses but deep down, where technology fails, absolutely nothing has changed in millennia. Human nature being what it is, scared of the unknown and always willing to invent nonsense about what the shadows hold.

 

#MEvårdsaknas handed over the petition to the parliamentary committee on health and welfare today. More than 9000 signatures!

 

10 044 now! Phenomenal!

The petition will be presented to regional healthcare representatives in various parts of the country as well Fingers crossed for some good media coverage.

Blog article written by Skiftet, the petition platform currently used by #MEvårdsaknas

https://skiftet.org/2019/11/politikerna-stod-i-ko/

 

SVT: Ingen ME-vård norr om Stockholm – trots löfte från Region Västerbotten
https://www.svt.se/nyheter/lokalt/v...tockholm-trots-lofte-fran-region-vasterbotten

ETA: https://twitter.com/user/status/1196331033353953280

 

He's been sentenced to 1.5 years in prison for manslaughter They will appeal.

https://www.svd.se/dom-meddelas-i-barmhartighetsdrap

(Had a quick look but I wasn't able to find an article that isn't behind a paywall, sorry.)

 

There was one in Norwegian media:
VG: Richard (63) dømt for drap - ga ME-syk kone morfindose
google translation: Richard (63) convicted of murder - gave ME-sick wife morphine dose

Lundgren is convicted of murder, but to a penalty shorter than the minimum time because the court believes there are mitigating circumstances.
- It clearly considers that his actions alone were caused by thoughtfulness and love for (spouse's name), the court writes.

 

Very symbolic that the precedent for this judgment is from nearly the exact same mistake and for identical reasons. It's grotesque that this is almost entirely the fault of medical professionals and institutions. The despair that leads to situations like this is almost entirely the product of choices made to reject reality and substitute it with nonsense.

It doesn't have to be this way, yet some people are aggressively motivated to keep the failure going. Blood on all their hands. Lives wrecked whole on a mediocre belief system. Meanwhile idiots who promote shouting STOP at your symptoms are in complete control. And all because the sick have no rights, only privileges that can be waived on mere whims and beliefs. What a complete and total mess.

 

This is not about ME, but for those of you who might be interested in the bigger picture and the politics of the healthcare situation in Sweden.

It's relevant to advocacy work and in order to understand the difference between ME healthcare in a primary care setting vs at the two ME specialist centers in Stockholm (Stora Sköndal ME/CFS-mottagning and Bragée ME-center: private clinics that have contracts with Stockholm County Council, the regional municipal body responsible for the public health system).

It's a very well-written and informative opinion piece about some of the problems caused by the privatisation of specialist healthcare in Stockholm. (Healthcare in Sweden works differently in different counties, so this is not a nationwide situation.)

I don't know enough about it to make any informed comments, but I do find it very interesting. Would love to learn more about what's going on behind the scenes, especially in relation to ME specialist care...

En krigsförklaring mot gemensamt finansierad vård
https://www.dagensarena.se/opinion/en-krigsforklaring-mot-gemensamt-finansierad-vard/

Google Translate: A declaration of war against jointly financed healthcare
https://translate.google.se/transla...igsforklaring-mot-gemensamt-finansierad-vard/

 

This conviction is a travesty. I hope he never doubts he did the right thing.

It angers me so much that there are so few places we are allowed the right to end our lives the way we choose at a time of our choosing, and without needing to hide it and do it without having friends and family around for support in case they are legally implicated in a crime.

I wish him courage and hopefully success in his appeal.

 

For some light relief.
This turned up on FB today. The Danish ME Society is looking for votes here: https://pfabruglivetfonden.dk/forside/afstemninger/hjertesag/

The PFA foundation gives some money every year to a handful of good causes (I don't know how much). Public voting influences the decision process.

You can vote for the Danish ME Society by finding "ME Foreningen" on the alphabetical list and clicking on the heart below the picture and beside the word "stem" (which means 'vote'). It seems to work from outside Denmark; no personal details are requested.

 

More #MEvårdsaknas media coverage This time on the local news on TV. Great stuff

https://www.svtplay.se/video/245214...yheter-vasterbotten-19-nov-07-05-1?start=auto

 

On the news (television) yesterday, 4 minutes long:

Osynlig sjukdom drabbar tiotusentals svenskar ["Invisible illness affects tens of thousands of Swedes"]
https://www.tv4play.se/program/nyheterna/12511495

All media coverage of #MEvårdsaknas is now listed on their website. (Much more than what has been shared in this thread!)
https://mevardsaknas.wordpress.com/mevardsaknas-i-media/

 

Interesting article @mango,

It intrigues me that the one country in the world where we hear movement in the opposite direction is the model for all this - the USA. Elizabeth Warren looks to be calling for a national health system and I have never heard even a Democrat do that before. In the UK we have assumed that our woes are ahead of Scandinavia's but maybe we are running in parallel.

 

An illustration of what level the Swedish ME deniers prefer to keep the debate at... This woman is a professor and consultant (has more than 40 000 followers on Twitter).

If there were medals for patience, I know someone who deserves a big gold one..!

https://twitter.com/user/status/1197611845001060354