News from Scandinavia

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/
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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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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.
 
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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/
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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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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.
 
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
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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/
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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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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
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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
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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
 
More bad news from Stockholm, which affects all of us since they are the only dysautonomia specialist clinic in Sweden. Not specifically about ME, but it is affecting many pwME. No official info yet, the Swedish Covid Assocation is looking into it.

Here's a summary of what we currently know, written by a pwPOTS:

När vården rasar samman
https://potssorkensresa.com/2024/12/09/nar-varden-rasar-samman/
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There have been a lot of posts on Facebook recently about how there seems to have been a mass discharge of patients who have attended the cardiovascular [dysautonomia] clinic at Karolinska. Contact has been ended, follow-ups have been cancelled and medications have been drastically tapered [meaning discontinued, prescriptions are not being renewed]. Medications that have been taken for a long time are removed or are to be followed up by primary care, which has no knowledge whatsoever of POTS. Medications that have enabled patients to return to the labour market after years of sick leave. One of the few clinics in the country specialising in POTS has dismissed its patients with a letter sent home in a few sentences. Patients, some of whom have been attending the clinic for years, are now being referred to their health centres and outpatient services: clinics that lack the capacity to prescribe most of the medications used by this patient group.

Seeing this makes me not only angry and sad, but also scared. Terrified that everything I am so grateful for could be taken away from me, that I will once again be left behind, with a racing pulse and ambulance journeys while the healthcare system passively looks on.
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:(:(:(
 
mango said:
More bad news from Stockholm, which affects all of us since they are the only dysautonomia specialist clinic in Sweden. Not specifically about ME, but it is affecting many pwME. No official info yet, the Swedish Covid Assocation is looking into it.

Here's a summary of what we currently know, written by a pwPOTS:

När vården rasar samman
https://potssorkensresa.com/2024/12/09/nar-varden-rasar-samman/

:(:(:(
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The Swedish Covid Association published a template/guide today (in Swedish) to help patients, who have been wrongly discharged, report it to the patient advisory committee (Patientnämnden).

https://covidforeningen.se/utskriven-fran-hjarta-karl-karolinska/
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How to report

Have you been suddenly discharged from the cardiovascular clinic at Karolinska? We need to help make visible the consequences of patients being suddenly discharged to primary care, without handover to ensure continued medication. We therefore want as many people as possible to report this to the Patient Advisory Committee as soon as possible. It is the most important thing to do.

To facilitate the reporting process, we have developed a template for reporting.

Please follow this procedure:
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'a gradual increase in activity helps people recover.'

'This new research provides evidence for treatments that will help people recover, and is consistent with the approach the Oslo Networks understanding of these conditions.'

Signed by Paul Garner who was one of the authors of the BMJ review.
 
This is a Lightning Process story that has already been told several times before in the media, about a young woman who suffered from severe ME but now has recovered and has become an athlete. What's not to love?

It was told once again today by Norwegian TV2.

What's new to the story though are some critical comments about LP by a professor in psychology. It's so good to finally see some more nuanced media coverage about LP in my country:

(auto translated)

Lightning Process is a controversial self-help program. TV 2 has spoken to Professor at the Department of Psychology (UIO), Jonas R. Kunst, who is not convinced that the treatment is effective.

– Lightning Process is a self-help program that claims to be able to improve the health of people with ME, a condition for which there is broad agreement in medical fields that there is no treatment. The program is based, among other things, on a purely speculative assumption that a chronic stress response, which is allegedly due to the sufferers' focus on symptoms, maintains the disease, he says.

– Does the treatment work on ME patients?

– There is no good evidence that Lightning Process has a positive effect among ME patients. On the contrary, several report that they have experienced a worsening of their symptoms after going through the program. Based on this, for example, British health authorities explicitly warn against people with ME participating in Lightning Process. In the UK, Lightning Process has also been convicted of being misleading in its marketing, Kunst replies.

The professor points out that studies indicate that only a few patients with ME experience spontaneous recovery and recover.

– What is your view on the Lightning Process?

– Most up-to-date professionals have long since shelved the Lightning Process. Those who still hold on to this method often have personal or financial interests. For example, they may have built their careers on outdated psychological explanatory models for ME, or that they themselves are involved as LP therapists, the professor answers.
 
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Opinion piece in a local newspaper, by two politicians.

”Nya råden direkt skadliga för ME-patienter”
https://www.barometern.se/2024-12-14/nya-raden-direkt-skadliga-for-me-patienter/
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‘New advice directly harmful to ME patients’

Between 40,000 and 130,000 people are estimated to suffer from ME in Sweden, a disease that causes persistent fatigue and often pain. The new treatment guidelines adopted by the National Board of Health and Welfare earlier this year now risk worsening the condition and need to be changed urgently.
This is an opinion piece in the Barometern Oskarshamns newspaper, and the opinions expressed are the writer's own.
It is a known fact that diseases that affect women to a greater extent do not have the same status and are not taken as seriously.

It is a well-known fact that diseases that affect women to a greater extent do not have the same status and are not taken as seriously.

There is no exercise or rest for ME/CFS, a neurological disorder that more often affects women aged 20-40. Despite this fact, the first national knowledge support programme, which has now been sent to the regions, recommends gradually increasing exercise.

The National ME Association has repeatedly warned of the serious consequences of this recommendation for ME sufferers, where scientific studies show that, on the contrary, symptoms worsen after exercise. Moreover, no clinical experience of treatments that have worked has been gathered, despite the fact that many patients have improved after undergoing them.

The fact that no specialised doctors with experience of working with the disease were contacted by the National Board of Health and Welfare's expert group when the new advice was drawn up is also serious. Nor were researchers in the field consulted; only people working in rehabilitation were allowed to speak. This is something that the Swedish Association for ME Patients has pointed out time and time again in various letters and debates.

This negligence can lead to a deterioration in the health of affected patients. If the energy account is overdrawn, the paralysing fatigue risks becoming even deeper and more prolonged. In addition, even more severe symptoms can be triggered for those who also suffer from what is called ‘severe fatigue’, which involves a lack of energy down to the cellular level. Severe energy deficiency can lead to respiratory arrest, heart problems and severe neurological disorders.

It is a known fact that diseases that affect women to a greater extent do not have the same status and are not taken as seriously. The mistakes made in this case also hit a group that was already being questioned. For a long time, the patient group was accused of exaggerating their symptoms or that the fatigue was imaginary.

We call on the National Board of Health and Welfare to take action as soon as possible. Until new updated guidelines are in place, it is also important that the regions do their utmost to work based on what science says about the disease.

In April, a new survey was published by the European ME Alliance (EMEA), showing that as many as three out of four people feel that they have been let down by the healthcare system and that they have received little or no support. When the left-wing government in Stockholm closed the Bragée clinic in 2023, the only specialist clinic for ME/CFS in Sweden disappeared, where successful research was also conducted together with several Swedish and foreign universities.

Now this vulnerable group is primarily relegated to primary care.

KD-kvinnor wants to:

# Establish the national knowledge centre for ME that the Riksdag commissioned the government to establish in 2018.

# Establish a specialist clinic for ME patients in each healthcare region.

# Prioritise patient-oriented clinical research and biomedical research on the disease in a national research strategy.

# Increase knowledge about ME in primary care.

Those who are diagnosed need to be helped rather than hindered, with over 70 per cent of all sufferers deteriorating over time. We cannot be complacent.

Margreth Johansson, Chairman of KD-kvinnor Kalmar län

Sarah Kullgren, President of KD-kvinnor
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