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

Google Translate said:
Clinic for ME patients delayed - politicians in Västerbotten critical

The plans for a specialist ward for ME patients are paused for financial reasons. - It does not mean that we have given up politically, says LiseLotte Olsson (V) regional council in Västerbotten.

There have been plans and decisions for a few years to open a specialist clinic for ME patients in Västerbotten, that will receive patients from all over Norrland [mango: the northern half of the country]. But the Director of Health has paused the work for financial reasons. Almost 600 million SEK has to be saved during the current term of office, says the regional council LiseLotte Olsson (V).

- Politically, we work to get a clinic as soon as possible. This is a group that really needs help. My hope is that in the first stage we will be able to work out treatment guidelines to support primary care to take care of these patients, says LiseLotte Olsson (V).

She wants to be able to offer a specialist clinic in Norrland in the near future. There is no one north of Stockholm for this group of patients.

- It is shameful, actually. I think we should have that as a university hospital, says LiseLotte Olsson.
Click to expand...
 
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

Google Translate said:
On Thursday, November 14, 2019, at 11.15 am, the protest action #MEvårdsaknas will hand over a petition with over 6,000 signatures to the Social Committee, demanding that the government and parliament ensure that all regions prioritize good and [geographically] close care for people with Myalgic Encephalomyelitis (ME).

Seriously ill people lack adequate care

ME is a serious, chronic, complex multisystem disease that dramatically limits the ability of patients to work. The disease is classified as neurological and has diagnostic code G93.3. One of the main symptoms is that the symptoms are exacerbated by exertion. Specialist care is lacking in most regions while the majority of the sick cannot travel to another county for care without deterioration. Many people become worse leaving home, but are still denied home visits by primary care. As many as 40,000 may be affected by ME in Sweden but only a fraction have a confirmed diagnosis. The risk of injury is high. A large part of the medical profession lacks up-to-date knowledge of ME and many sufferers encounter mistrust in the healthcare system.

In one month, #MEvårdsaknas, a protest action against today's unreasonable care situation for people with suspected and confirmed ME, has collected over 6,000 signatures and over 50 people from different regions in Sweden have written and shared their experiences of care.

“The Health Care Act states that care should be provided as needed. Denying seriously ill people the care they need is not only unethical but also illegal! As a legitimate occupational therapist, I am ashamed of how the healthcare system treats me and other people with ME! ”(Malin Carlbom - leg occupational therapist, long-term ill and initiator of the protests campaign #MEvårdsaknas.)

"In the stories ME sufferers shared about their care situation within the framework of the #MEvårdsaknas protest action, it becomes very clear that many people have become more ill because of wrong care, incorrect, delayed or missing diagnosis and lack of support from the community." (#MEvårdsknas, in an opinion piece in Dagens Samhälle)

[...]
Click to expand...

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

 
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.
Google Translate said:
The defense wants him to be acquitted, and should he be sentenced they would want him to escape punishment through penalty remission.

- The risk of recurrence is zero. He should not sit in prison nor be sentenced, says the defense lawyer Thomas Bodström, who says they will appeal if he becomes convicted.

He also points out that the husband respected his wife's will and did exactly what his wife wanted.
Click to expand...
https://www.svt.se/nyheter/lokalt/vasternorrland/aklagaren-yrkar-pa-tva-ar-fangelse-for-maken
Google Translate said:
Richard made no secret that the time after the incident and even the trial itself were difficult.

- It's been a really tough time.
Click to expand...
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 :cry:

I really appreciated what Sten Helmfrid wrote on Twitter the other day:
Google Translate said:
The argument that all doctors do not recognize the diagnosis ME/CFS and that the medical profession is divided is often highlighted. Wrong conclusion. ME/CFS has been investigated by 15 experts who reviewed over 9000 articles and 1000 submitted comments. The medical profession is not divided, it is uneducated
Click to expand...
 
mango said:
when a woman was sentenced to one year in prison for having helped a man with MS end his own life
Click to expand...
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! :balloons::party::thumbup:



Google Translate said:
The petition for adequate care for all ME sufferers turned over into 9000(!!) signatures just in time for when two representatives from Skiftet met with the social committee chairman Acko Ankarberg Johansson and deputy chairman Kristina Nilsson today on behalf of #MEvårdsaknas

In the hand, Acko and Kristina received 55 stories about the health care situation of people with ME, but the signatures were handed over digitally as they would otherwise have generated over 200 pages in printed form.

Robin from Skiftet informed them about #MEvårdsaknas, what it can be like to have ME, and that care is needed throughout the country. The representatives from the Social Committee were positive that the issue was being highlighted and would read all the stories. They also wanted to learn more about the disease.

We are deeply grateful to Skiftet [the petition platform] for wanting to be a helping hand today because we ourselves are too sick to be there in person.
Click to expand...
 
mango said:
#MEvårdsaknas handed over the petition to the parliamentary committee on health and welfare today. More than 9000 signatures! :balloons::party::thumbup:
Click to expand...
10 044 now! Phenomenal! :party::balloons::thumbup:

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/
Google Translate said:
The politicians stood in line

Robin Zachari
November 14, 2019 at 14:32

The politicians literally stood in line to meet Skiftet, the media was in place and I've probably never experienced anything like it. This is what happens when over 9,000 active people at Skiftet get involved for everyone suffering from the disease ME.

Today I met Acko Ankarberg (KD) and Kristina Nilsson (S) who are the chair and deputy chair of the parliamentary committee on health and welfare. There I handed over the signatures and 55 stories about what it is like to live with the disease ME. The politicians are perplexed, they think knowledge is lacking and therefore they promised to read all the stories to find out more. Outside the room stood Ulla Andersson (V) who is an economics-political spokesperson and was waiting for us after the meeting. As I said - never experienced anything like it.

Now, the National Board of Health and Welfare is working on an overview of the disease for today it is different in different regions. The heroes behind #MEvårdsaknas continue the campaign and will hand it to Västerbotten and then maybe even more regions. Today we showed the strength of being many and so I ask you to share the ME campaign with your friends and family. Because the fight continues, so politicians can't bury it in an investigation.
Click to expand...
 
Last edited:
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

No ME healthcare north of Stockholm - despite promise from Region Västerbotten

Despite political decisions, there is no specialist care north of Stockholm for patients with Myalgic Encephalomyelitis (ME), a neurological disease that causes significant functional impairment. In light of this, more than 10,000 people have now signed a petition, which will be handed over to the Västerbotten region on Tuesday.

In October 2018, the region decided to reallocate resources for specialist care for ME in the budget. Despite this, no such redistribution has taken place and since September the plans are on ice.

The #MEvårdsaknas campaign was started to highlight the healthcare situation for patients with ME. Behind the initiative is Malin Carlbom who lives with ME herself. Because of the illness, she is unable to make an oral conversation so the interview has been done via e-mail.

- I myself have been ill for over ten years and only got sicker from the care I received - but I can not get any investigation in Västerbotten because no one wants / can investigate here. I am expected to go to Stockholm even though I am getting worse from leaving my home, Malin writes. [...]
Click to expand...

ETA:
 
Last edited:
mango said:
Today was the last day of the Nordingrå trial. The sentence is expected to be announced on Monday November 18.
Click to expand...
He's been sentenced to 1.5 years in prison for manslaughter :cry: They will appeal.

SVD.se said:
The seriously ill woman wanted an end to her life. Her husband claims he acted in an emergency when he gave her a lethal dose of morphine.

Ångermanland District Court now convicts the man for manslaughter.

The man is sentenced to prison for 1.5 years for injecting his wife with a lethal dose of morphine. The man, who is in his 60s, has admitted the facts but denies the crime.

- I have talked to my client and we definitely intend to appeal. Although it is far from the minimum sentence, we are not satisfied until he is acquitted or given a conditional sentence, the man's lawyer Thomas Bodström tells TT.
Click to expand...
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.)
 
mango said:
(Had a quick look but I wasn't able to find an article that isn't behind a paywall, sorry.)
Click to expand...
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.
 
mango said:
Google Translate: A declaration of war against jointly financed healthcare
https://translate.google.se/transla...igsforklaring-mot-gemensamt-finansierad-vard/
Click to expand...

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..! :trophy@
Google Translate said:
@AgnesWold
It is not doctors who have poor knowledge, it is the ME concept that is diffuse and lacks defined criteria

@StenHelmfrid
The ME concept has emerged from the observation that many patients, after undergoing certain infections, develop a chronic state of fatigue that is not relieved by sleep, post exertional malaise, autonomic and central nervous system disorders, and sleep disorders.

@AgnesWold
What are the disorders of the autonomic nervous system? Do you mean to become dizzy when you stand up (postural hypotension), which is a completely normal phenomenon

@StenHelmfrid
Orthostatic intolerance, dizziness, palpitations, agitated bladder, extreme paleness, shortness of breath after exertion, IBS, NMH and POTS are usually counted as the autonomic symptoms.

@AgnesWold
"Orthostatic intolerance"

@AgnesWold
Being dizzy in the head when you get up after lying down is physiology, not something pathological

@StenHelmfrid
Orthostatic intolerance means that patients develop symptoms if they stand up for an extended period of time. It's not the same as getting dizzy after standing up.

@AgnesWold
Why should you stand up for a longer period?

@StenHelmfrid
Yes, Agnes, why do people stand up? They could, for example, stand in a queue or stand in a crowd with little opportunity to move.

@AgnesWold
But what does this have to do with ME? Feeling dizzy if forced to stand up is extremely normal (for example, I am, I never stand if I can avoid it).

@StenHelmfrid
Some ME/CFS symptoms also occur in other people. I do not agree that it is any kind of normal to be dizzy when standing up. A number of years ago we had half-hour long presentations at work, and nobody had a problem with that.
Click to expand...

 
You must log in or register to reply here.
Back
Top Bottom