News from Scandinavia

mango said:
Article in a local newspaper about a severely ill pwME, and about her not getting the help she needs at home, not even with food or basic hygiene.

ME-sjuka Jessika: ”Jag ligger här och sakta dör"
https://www.sttidningen.se/nyheter/...akta-dor.a35d1323-9fa9-4da4-97d8-3a37ff9d02e3
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Us Nordics are always in the top positions of the "Happiest people in the world" rankings. We pride ourselves for having the best social security system in the world. Some also say that it's like winning in the lottery to be born here! How is it then possible that stories like this keep getting reported constantly in the media? And why do these stories have almost no effect, or so it seems? Ignorance is bliss.
 
Yan said:
How is it then possible that stories like this keep getting reported constantly in the media? And why do these stories have almost no effect, or so it seems? Ignorance is bliss.
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Toxic positivity comes to mind.

And we’re not used to suffering. As a Norwegian, very few of my friends or family can handle talking about the reality of my current life. Some even instruct me to not talk about permanent disability, as if that is something unreasonable to think about when I’m 99 % bedbound. I have to talk about when I get better, not if I get better.
 
Utsikt said:
Toxic positivity comes to mind.

And we’re not used to suffering. As a Norwegian, very few of my friends or family can handle talking about the reality of my current life. Some even instruct me to not talk about permanent disability, as if that is something unreasonable to think about when I’m 99 % bedbound. I have to talk about when I get better, not if I get better.
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It’s similar in Swiss culture…
Always “Do you feel any better”. People don’t have a cultural conception of permanent illness. Illness has to be something that gets better with time.

Yan said:
Us Nordics are always in the top positions of the "Happiest people in the world" rankings
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And Switzerland has the same “happiest country in the world” label often slapped on it. In reality it’s a trope. Come here and the average person is semi-misreable. We’re mistaking “richest country” for “happiest country” in how we measure these “happiness” indexes.
 
To me what is surprising is not necessarily the fact that Nordic countries score high in the various "happiness" etc indexes but that they tend to be quite progressive and modern and forward-thinking. I find it really hard to understand how a country like Norway can be one of the worst offenders of BPS ideology, as I expected badly-treated, marginalized groups like pwME to be treated with a lot more understanding and constructive, solution-oriented attitude there, and not like "hysterical women in the 19th century", to be blunt.

I think I mentioned the situation in Norway once in my group and some people were really shocked as they expected the situation to be a lot rosier there for pwME, simply based on the fact that it is just so not known for being a country with widespread backwards thinking on such social matters. Quite the opposite. I always find this so surprising myself too, it seems to be such a contradiction.
 
Wyva said:
To me what is surprising is not necessarily the fact that Nordic countries score high in the various "happiness" etc indexes but that they tend to be quite progressive and modern and forward-thinking. I find it really hard to understand how a country like Norway can be one of the worst offenders of BPS ideology, as I expected badly-treated, marginalized groups like pwME to be treated with a lot more understanding and constructive, solution-oriented attitude there, and not like "hysterical women in the 19th century", to be blunt.

I think I mentioned the situation in Norway once in my group and some people were really shocked as they expected the situation to be a lot rosier there for pwME, simply based on the fact that it is just so not known for being a country with widespread backwards thinking on such social matters. Quite the opposite. I always find this so surprising myself too, it seems to be such a contradiction.
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My experience is that a lot of health care workers also believe the hype of how progressive we are, so they refuse to believe we can be treated badly without there being good cause (ie. it's needed "tough love" we are treated with).
 
IMO, one issue is the high levels of trust in our society, especially towards public institutions. When you couple that with conflict avoidance, the incompetent people are able to rise to power in the very large (30+ % of the workforce) public sector without being challenged.

If I try to tell someone that the public health agencies completely dropped the ball on the ongoing Covid pandemic, most people are not able to imagine or accept that the experts can be so wrong.

There are also many issues with regards to «incapacity» in the public sector.
 
Yan said:
Us Nordics are always in the top positions of the "Happiest people in the world" rankings. We pride ourselves for having the best social security system in the world. Some also say that it's like winning in the lottery to be born here! How is it then possible that stories like this keep getting reported constantly in the media? And why do these stories have almost no effect, or so it seems? Ignorance is bliss.
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Stuff like this always has terms and conditions: only for working people, or people who can grow up to be working people, or people who worked most of their lives. That's why the primary goal of health care before retirement age is to get people back to work, regardless of capacity.

The public lie is to pretend like this extends to those who deserve support, but that's a lottery system based on arbitrary factors, most of which have little to do with those unfortunate to need help from society.

So it's true for those with good enough health, highest standards of living. It's just that the same general formula applies for those who are unlucky as in any other society: screw you, you're useless.

Fundamentally everyone has thresholds to write people off. Few people would object to mass murderers being beat up to death by a mob. From there it's a bunch of filters that divide people between people and not-people, haves and have-nots. And all societies write off sick people as not-people, closer to where pets are. And even then, oftentimes below. This will continue as long as medicine remains so primitive we can barely handle more than a fraction of the needs out there.
 
Wyva said:
I think I mentioned the situation in Norway once in my group and some people were really shocked as they expected the situation to be a lot rosier there for pwME, simply based on the fact that it is just so not known for being a country with widespread backwards thinking on such social matters. Quite the opposite. I always find this so surprising myself too, it seems to be such a contradiction.
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Human nature doesn't change. Context can change how it's expressed, but human nature is the same everywhere, and we are the exact same nature as the very first humans.
 
21-åriga Victorias kamp mot postcovid – fem år efter första svenska coronafallet
https://www.svt.se/nyheter/lokalt/v...ovid-fem-ar-efter-forsta-svenska-coronafallet
Auto-translate said:
21-year-old Victoria's fight against post-covid - five years after the first Swedish corona case

Victoria, 21, has a headache every day after contracting covid-19. Today marks exactly five years since the first case of coronavirus was detected in Sweden - and Victoria is one of thousands of young people diagnosed with post-covid.

- ‘I can't do the things I love,’ says Victoria Göransson, from Alingsås.

When Victoria Göransson from Alingsås was 18 years old, in April 2021, she fell ill with covid-19. That was almost four years ago and she was then a girl who could train 20 hours a week. She was quarantined for a month with the usual and fairly mild symptoms of cold and fever. But she hasn't fully recovered - life is no longer the same.

- ‘I don't know what it feels like to have a day without a headache.

Five years since covid arrived in Sweden

She feels that it has been difficult to get help from the healthcare system and that they have not listened to her. Today she has been diagnosed with ‘post-infectious condition after covid-19’.

Five years since the first case of covid-19

31 January marks exactly five years since the first case of COVID-19 was detected in Sweden. According to the Karolinska Institute, nearly 150,000 Swedes are now living with long-term severe symptoms following a covid-19 infection.

The Swedish Covid Association estimates that around 10,000 of those affected are children, as first reported by Läkartidningen.

Supporting children and young people

To support children and young people suffering from post-covid who have difficulty coping with everyday life and school, the Swedish Covid Association has recently started a project, which has been granted funding from the General Inheritance Fund for three years.

- ‘We are very pleased to receive this grant, which will enable pioneering efforts to educate and support those affected. Our goal is to contribute to public education about our new widespread disease,’ says Lisa Norén, doctor and spokesperson for the association, in a press release.

Start the video from to hear how covid-19 changed Victoria's life.
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Opinion piece: ”Sverige är inte redo för nästa viruspandemi”
https://www.dn.se/debatt/sverige-ar-inte-redo-for-nasta-viruspandemi/
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‘Sweden is not ready for the next virus pandemic’

Today marks the fifth anniversary of Sweden's first case of covid-19. The world was not ready and our lives changed. Now we warn: The situation is still acute. There is an urgent need to develop medicines, vaccines and diagnostics to fight disease, reduce pressure on healthcare and improve preparedness for the next one, writes the Virus and Pandemic Fund. [...]

Although the consequences of the pandemic are not as visible today, they are still evident. 150,000 people are believed to be living with post-covid in Sweden, meaning they suffer from long-term complications of covid-19 that in many cases make it difficult to lead a normal life.[...]
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Marie, 49, blev sjuk i covid 2021 – är inte frisk än
https://www.aftonbladet.se/nyheter/a/VzXbbp/marie-ewerz-blev-sjuk-i-covid-2021-ar-inte-frisk-an
Auto-translate said:
Marie, 49, fell ill with covid 2021 - still not well

Five years after the first Swedish coronavirus cases, thousands of Swedes are still suffering from an illness that no one understands.

Marie Ewerz has not been well for four years - and the symptoms are getting worse and worse.

- ‘You feel so alone,’ she says.

Her son was just 9 years old when he found his mum passed out on the kitchen floor for the first time.

He has seen her turn blue in the face when her throat closed up and she couldn't breathe.

- He has been terrified and barely dared to leave me. It's still there. As soon as I cough, he calls out as if by reflex: ‘Are you OK mum?’ says Marie Ewerz, 49.

The disease she never imagined she would get has fundamentally changed her life.

But the biggest anxiety comes from how it has affected her family, especially her son, who is now 13.

- ‘We had a lot of trouble getting him to school. In the end, it came out that he was worried about what might happen to me at home while he was away. It's very scary. These years where he was just supposed to be a child, he has in some ways become an adult.

Missing everyday life

Marie Ewerz used to be like most people. A happy girl with a thousand irons in the fire, so she says, who liked to exercise, plant plants on the terrace of the terraced house in Linköping, socialise with friends.

That often grey everyday life that makes so many healthy people sigh and complain during all the dark days of the beginning of the year - that's what she wants back more than anything else.

Marie Ewerz fell ill with COVID-19 on 17 February 2021.

She never recovered.

It's been almost four years since she last worked. Now she can barely walk to the kindergarten where she used to work to say hello.

‘It affects the whole family’

It's a tiredness that won't go away. Recurring fever, when her feet feel like they're going to burn up.

A devilish headache almost every day, when it feels like your skull is going to burst.

Lung pain, difficulty reading, writing or looking at a computer screen. Sensitive to sound and light. Difficulty standing without leaning on something. A pulse that races at the slightest exertion.

Marie's illness affects her whole family - especially her 13-year-old son.

She describes it to her son as the battery in her body's phone never charging above 10 per cent. She runs out quickly.

- I often feel guilty. I compare it to his friends' mums, who can go off and do things. Even to my husband. He has to take a lot of responsibility. It affects the whole family.

Cause still unknown

What Marie Ewerz suffers from is called post-covid.

Judith Bruchfeld, consultant and specialist in infectious diseases at Karolinska University Hospital, doesn't like that word.

‘Long-covid’ better describes what it is, she says:

A course of disease that has not ended.

No one knows how many people are affected or how.

The studies Judith Bruchfeld has seen in countries like ours - the US, Canada, the UK - suggest that 1.5% of the population may have severe post-covid.

- This means that you have such severe long-term effects that you have difficulty working and functioning in your everyday life. Postcovid fulfils the definition of a public health disease,’ she says.

Exactly what causes postcovid is still not clear.

There are several theories.

The symptoms can be alleviated

Perhaps the virus or virus residues are still present in the patients.

Perhaps it is an autoimmune disease, where the body's immune system starts attacking healthy cells and tissues.

Perhaps small clots inhibit blood flow in parts of the post-covid patients' bodies.

- ‘There is a strong assumption that the virus or virus residues remain in the body, which can trigger the immune system and have long-term effects,’ says Judith Bruchfeld.

- ‘The closer we get to the mechanisms, the more likely it is that we could, at best, find a cure. We are not there yet. However, there is a lot we can do before we get there.

Many symptoms can be alleviated with the right treatment, says Judith Bruchfeld. She is therefore critical of the fact that almost all post-covid specialised clinics in Sweden have been closed down, while the knowledge support issued by the National Board of Health and Welfare is too vague to provide good support to doctors at all the country's primary care clinics.

Patients need help from someone who sees the disease as a whole, not just a vague collection of symptoms, she says.

Hopes for research

- ‘It is high time to create resources for this patient group. Many suffer in silence, they are so ill that they do not have the energy to push for adequate care. There is also a lack of resources and a better chain of care between primary care and other healthcare providers at the specialist level. There is a lot that needs to be done. It's been 5 years since the start of the pandemic. This is long overdue,’ says Judith Bruchfeld.

Marie Ewerz went to a post-covid rehab clinic in Linköping - until the region closed it down this spring.

- ‘It's a real shame. That's where all the knowledge was,’ she says.

Now she meets an occupational therapist at a neurological rehabilitation unit instead.

The goals in the rehabilitation plan they have drawn up are very, very small.

For example, she should be able to follow the lines of a text well enough to bake a recipe from a cookbook.

- When I read that plan, I can think: Oh my God, am I this sick? says Marie Ewerz.

She has no hope that the care will make her well.

- ‘Not based on the care I receive today. I hope that research is progressing, I know that they are doing research at full speed. I must try to have that hope. My goal is to get well. And if not fully healthy, then at least better. That's the attitude,’ she says.

‘Not working as a human being’

Often the road to recovery just seems to get longer and longer.

She suffers from exertion-induced deterioration (PEM), the same as ME patients can have.

- ‘If I go for a walk, I get sick for the rest of the afternoon. I get a fever, I feel like I have the flu.

And she doesn't get better.

- Quite the opposite. These pem attacks are getting worse, the brain fatigue is getting worse and worse. I'm not functioning as a human being. At the same time, you always have in your head that you want to be who you were. I want so much, but I can't do it.
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Dolphin said:
Conference Stavanger 2025
Norway's largest conference on ME/CFS and Long Covid will take place in Stavanger on 7 and 8 May 2025. Here, 11 speakers from six countries will provide an introduction to research in the field and share experiences from clinical practice.

https://www.mekonferanse.no/en/
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This conference looks good except for P*trino. Is anyone here going to this? It looks like the 2nd day will be posted later to youtube, but not the first day? No livestream, correct? Thanks.
 
Yann04 said:
Very much on the “BioBS” side of things. Ie. claiming a lot of unproven things and recommending unproven treatments.
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Thanks! He’s a bit of a saint in some patient communities, but I guess that’s because he’s very outspoken against GET/CBT and he says that he has fixes for some LC.

There’s a lot to unlearn when you’re new to this forum, so I appreciate the explanation!
 
Utsikt said:
Thanks! He’s a bit of a saint in some patient communities, but I guess that’s because he’s very outspoken against GET/CBT and he says that he has fixes for some LC.

There’s a lot to unlearn when you’re new to this forum, so I appreciate the explanation!
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No worries. I’m still unlearning some thing I thought were fact but don’t really have evidence behind them. The online ME spaces are ripe with disinfo — I’m glad this forum exists — it would be very isolating as a scientifically minded person otherwise.
 
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