News from Scandinavia

mango · Oct 21, 2024

mango said: ↑

This article was apparently the first in a whole series of articles about Maja. Still paywalled, unfortunately. 3 articles have been published so far, several more to come:
https://www.avestatidning.com/story/a4897877-dade-4ffe-9b2a-e69392b81d8b?pageSlug=fallet-maja

Experten om postcovid: ”Svårt att få rätt vård”
https://www.avestatidning.com/2024-10-18/experten-om-postcovid-svart-att-fa-ratt-vard/
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Part 5 about Maja.

Avestahälsan om kritiken: ”Postcovid är inte beprövat och godkänt”
https://www.avestatidning.com/2024-...tiken-postcovid-ar-inte-beprovat-och-godkant/

Auto-translate said:

Avestahälsan on the criticism: ‘Postcovid is not proven and approved’

Maja Westerlund, 20, is chronically ill after covid. Her family has criticised the Avestahälsan health centre for not taking her condition seriously.

- ‘Postcovid has not been tested, studied and approved for us to use. Or to be able to refer to clinics outside the region,’ says Avestahälsan's CEO Marcus Carlsson. Therefore, the health centre has not sent the referrals to [post covid] specialist clinics that the family requested.
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rvallee · Oct 21, 2024

Yeah this is exactly what HIV and climate change deniers say. I don't get this refusal to do anything based on lack of information when it's their whole job to do this. Lazy bums waiting for a handout.

mango · Oct 22, 2024

mango said: ↑

Part 5 about Maja.

Avestahälsan om kritiken: ”Postcovid är inte beprövat och godkänt”
https://www.avestatidning.com/2024-...tiken-postcovid-ar-inte-beprovat-och-godkant/
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Part 6 about Maja.

Mötet om Maja blev en chock: ”De säger att jag gör Maja sjuk”
https://www.avestatidning.com/2024-10-22/motet-om-maja-blev-en-chock-de-sager-att-jag-gor-maja-sjuk/

Auto-translate said:

The meeting about Maja was a shock: ‘They say I make Maja sick’

Maja Westerlund, 20, has been ill for two years after a covid infection. Her family describes a hopeless struggle to get the right help from the healthcare system. And at a meeting with [the primary care provider] Avestahälsan in March 2023, mum Malin Rabb is instead accused of making her child Maja sick.

- ‘They say I suffer from Munchausen by proxy. I have no words for how sick this is, says Malin.
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NelliePledge · Oct 22, 2024

So sorry for them

Hutan · Oct 24, 2024

mango said: ↑

An Icelandic documentary about ME.

https://www.ruv.is/sjonvarp/spila/me-sjukdomurinn-ormognun-uti-a-jadri/33851/a2qg5h
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An interesting watch.

Related to this, an Icelandic doctor who has a son with ME/CFS has joined the board of IACFSME. More here:
International: IACFS/ME - International Association for CFS/ME, IACFSME

Kalliope · Oct 27, 2024

Opinion piece in the Norwegian public broadcaster NRK by Guro Kjeilen Jakobsen. She is 23 years old and got ME after a tick bite when she was 16 years old. She tells about the cost of fighting for proper care:

Systemet som skulle hjelpe meg

Google translation: The system that was supposed to help me

quote:

When, more than ever, I needed to be met with help and care, I met distrust and rejection from the people and the system that was supposed to be there to receive me.

I grieve for the life I lost because of the disease, but also have to deal daily with the fact that I have less value than patients with the "right diseases". To have ME is to be worth less. Every day is a fight for basic rights and I never get a break.

Sean · Oct 28, 2024

and I never get a break.
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THIS!!!

mango · Oct 28, 2024

Paywalled news article in a local paper:

Richard Gavettes låtar släpps efter hans död
https://www.hn.se/noje/musik/richar...hans-dod.8ce0c630-0ae0-4541-840f-7200a3f0e151

Auto-translate said:

Richard Gavette's songs released after his death

Richard Gavette from Torpa suffered from ME/CFS and was only 37 years old, but he lives on through his music and lyrics.
- ‘I was in love with a creative genius,’ says Richard's partner Evelina Wahlqvist.
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http://richardgavette.se/

Auto-translate said:

Richard's personal story

In 2013, Richard Gavette was living the life of his dreams. He loved his everyday life as an entrepreneur and in his spare time he danced salsa and bachata with his girlfriend Evelina, went out with friends, meditated, nerded out on tea and chocolate and, when the opportunity arose, wrote some music. But on 24 November 2013, Richard's life changed drastically. A week before he and Evelina were due to move, he had an accident in which he hit his head, resulting in a severe concussion. Instead of the injury healing, Richard developed severe permanent brain fatigue, which meant he could only cope with about 45 minutes of mental stimulation per day, including talking to people. Every time he tried to increase his level, it led to a complete physical crash and he could be knocked out for days.

As if that wasn't bad enough, in the traumatic period after the accident, Richard developed a severe form of the neurological disease ME/CFS, which left him physically frail and almost bedridden. He was now completely dependent on the help and support of his loved ones. He spent his days lying down with dizziness and headaches.

Richard was only 27 years young when he had to accept the fact that his life as a normal human being was over. He had become a prisoner in his own body. To cope with his illness, Richard now needed to spend 22 hours a day in complete silence and rest. At first, he was going crazy. A human being is simply not made to live like that. With so little stimuli. With so much silence. It was a life without human life.

But after a while, something happened. The silence of rest, which until then had felt dead and terrifyingly silent, turned out to be bursting with life and anything but silent. With great fascination, Richard began to explore the silence and he allowed himself to really listen to it. He heard words. He heard music. The symphony of silence became his companion through the long hours of enforced rest. He was never alone. He began to dream of one day doing something with what he heard in the silence.

Time passed and months turned into years. Richard did his best to keep his spirits up, but the truth was that he was slowly getting worse. His little ‘bubble of life’ was shrinking with each passing month. He became more and more physically fragile.

In the autumn of 2017, Richard's neurological disease escalated completely, leaving him bedridden and barely able to cope with any mental stimuli. As Richard's disease was considered incurable - and knowledge of it in Swedish healthcare was very poor - Richard and his family knew there was little help available in hospital. But when Richard's condition continued to escalate to the point where he could no longer pee and poo or move in his bed, Richard's parents capitulated and called an ambulance to take Richard to Varberg Hospital. At the time, Richard had no feeling or movement from the neck down and he feared that it would spread to his head and that he would lose the ability to speak.

As Richard lay there in the hospital bed in the emergency room and it seemed like life was leaving his body altogether, Richard made a promise to himself:

‘If I somehow manage to get back home and get something of a life back, I will devote my life to trying to realise the books and music of my dreams.’

And somewhere in the chaos of the hospital, things turned around. After a couple of days, Richard regained feeling and movement from the neck down, and after another couple of days he was able to stand up, and a couple of days later he was once again able to pee and poo and move around a bit in his hospital room.
There was no medical explanation for what happened in the hospital, but Richard and his family chose to see it as a gift of life. After three weeks, Richard was discharged from hospital and this year's Christmas presents from the community were a wheelchair and a shower stool...

For Richard, it was like getting a new life in the same body. The day after Richard returned home, he started walking the path of dreams. He was still very ill, barely able to move around his home and still very much in need of help from his loved ones - but his condition was relatively stable and his brain was once again allowing him about 45 minutes of mental stimulation per day.

To get something done with his dreams, Richard had to give up several things that used to be part of his life. For several years, he didn't read the news, use YouTube, Facebook or other social media. He spent 10 minutes a day communicating with loved ones and the remaining 35 minutes writing and creating.

Richard began to wander and one poem eventually became a hundred poems - and one book became several books. A completed demo became a completed demo album. And he kept walking - one small step at a time. The weight of Richard's illnesses was ever present and every day was a dance on the edge of a knife, but as long as he was writing and creating, he felt happy and alive.

In the 6 years that Richard was able to indulge his dreams, before illness struck and he died in the spring of 2024, he wrote and completed more than 1000 poems and lyrics and more than 350 songs. Richard's 18 books are available as e-books at Adlibris and Bokus and in PDF form on his website. Richard's music is available on Spotify and YouTube and since spring 2022, Richard's songs are produced and sung by musician and producer Benjamin Önnhed.

Richard's personal story reminds us that it is possible to realise our innermost dreams. If Richard could do it, most of us probably can.
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Ravn · Oct 30, 2024 at 1:44 AM

Two pieces in Sundhedspolitisk Tidsskrift, one written by editorial staff (based on press release by the Danish ME Association), the other an opinion piece urging the health minister to take note of Maeve's death and learn from it

google translate said:

The ME Association, which represents Danish patients with myalgic encephalomyelitis (ME), met on Monday in Copenhagen with WHO's European director, dr. Hans Kluge, to promote awareness of ME and strengthen recognition of the disease through the WHO European network. This is what ME Foreningen writes in a press release.
[...]
The fact that WHO meets with the European ME Alliance (EMEA) is because WHO Europe accredited EMEA in 2023. This means that all EMEA's member organisations, including the Danish ME Association, and their approach to the disease is recognized by the WHO, explains Cathrine Engsig, press officer at the ME Association.

"The ME Association and the EMEA are optimistic after the meeting with WHO/Europe and look forward to addressing the overlooked and forgotten disease in order to ensure early and consistent diagnosis of patients, as WHO recommends," says Engsig.

Misdiagnosis and lack of support in Denmark
In Denmark, failure to use the WHO diagnosis code for ME leads to the disease often being misdiagnosed and referred to psychiatry as a "functional disorder." A diagnosis code that is unique to Denmark and is not used internationally. Engsig explains that this creates great confusion and uncertainty among patients, who often end up in a zigzag course without proper treatment: [...]
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https://sundhedspolitisktidsskrift-...=da&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

google translate said:

In Denmark, ME patients are still without adequate protection in the healthcare system, despite, among other things, warnings and open letters to the Minister of Health. We want an urgent effort to change this – inspired by the latest serious realizations in England, which should also give food for thought here at home, write Vibeke Vind and Esben L. Gustavussen.

Open letter to Sophie Løhde

In November 2023, the undersigned wrote an open letter to Sophie Løhde: ME sufferers should be protected in the Danish healthcare system . Unfortunately the Minister did not address our concern and nothing happened.[...]
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https://sundhedspolitisktidsskrift-...=da&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

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