News from Scandinavia

Opinion piece in Läkartidningen yesterday (before the new guidelines were published). Signed by clinicians and researchers: Lisa Norén, Artur Fedorowski, Marcus Ståhlberg, Judith Bruchfeld and others. ME is not mentioned specifically, other than "other post infectuous conditions".

Postcovidmottagningar behövs både för patienter och framtida beredskap
https://lakartidningen.se/opinion/d...vs-bade-for-patienter-och-framtida-beredskap/
Auto-translate said:
Post-covid clinics needed for both patients and future preparedness

‘Don't miss the unique opportunity that the pandemic brings: to accelerate learning and improve care in post-infectious conditions.’

In the current state of knowledge, best care means identifying the individual patient's symptom cluster through appropriate diagnostics to enable symptomatic treatment and personalised rehabilitation. This approach should be the starting point for the work of health services. Where up-to-date knowledge on diagnostics is not implemented, patients miss out on potential symptom relief. It is simple maths. Specialised care for post-covid and other post-infectious conditions is needed as niche expertise for consultation - just as for other complex and chronic diseases.

The importance of continuous knowledge development regarding postcovid is emphasised by the Swedish Agency for Health and Care Services Analysis [6]. Referring the most severely ill to primary care without the conditions to continuously follow knowledge development entails patient safety risks. The risk of unequal care increases.

Patients with severe post-covid need multidisciplinary specialised care. In one study, health-related quality of life in post-covid was reported to be similar to that of people with advanced lung cancer. The effect of post-covid on patients' daily activities was greater than that of stroke and comparable to that of Parkinson's disease [7]. Unlike chronic conditions with comparable impact on quality of life and activities of daily living, most regions lack a specialised level of care for the most severely ill in post-covid. Would this have been accepted for the other diagnoses above?

Gathering the most severely ill patients in multidisciplinary specialist centres, as recommended by the WHO [8], creates the conditions for building experience-based knowledge on a larger patient base, for research and for implementing the latest knowledge from research - in short, for providing good, accessible and patient-safe care. [...]
:thumbup:
 
personalised rehabilitation

Anytime I hear those words my alarm bells starting ringing loudly.

I mean, it's nice words and all, and I really hope they deliver. But the hard earned cynic in me will wait until I see the details of what they are going to do, and hear patient reports of what actually happens in there.
 
An ME-clinic has opened today on Iceland according to the Icelandic newspaper Morgunbladid. The article is paywalled, but here is the text that's available translated into English:

Helping ME patients in Akureyri
• The Akureyri clinic opens tomorrow • 75 years since Akureyri disease was diagnosed for the first time • The number of ME cases has doubled since the epidemic • A cure has not yet been found

 
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On Swedish TV tonight, 19 August: Fråga doktorn SVT1, 19 aug kl 18:45-19:30
https://www.svtplay.se/fraga-doktorn
Auto-translate said:
Ask the Doctor
Theme: Postcovid.

Postcovid has been called our new public health disease. Arelie Aschan was diagnosed with postcovid when she was 10 years old. Now 14, she still has problems with heart palpitations and extreme fatigue, and finds it difficult to attend school. Is there any effective medicine and what role do new treatment recommendations play?

Participants include Judith Bruchfeld, consultant in infectious diseases, Lisa Norén, doctor and post-covid patient, Niklas Arnberg, professor of virology and Jens Persson, specialist in general medicine.

Programme host: Sofia Rågenklint. Produced in 2024.
 
Is it still largely considered a social contagion phenomenon? Initially that's mostly what I saw out of Sweden, eager to dismiss anything that contradicted the pursuit of herd immunity through mass infections. Last I saw it mostly laughed at publicly.

"Our new public health disease" seems to be doing an awful lot of work here. I mean, it is, but that would be news to the authorities.
 
Is it still largely considered a social contagion phenomenon? Initially that's mostly what I saw out of Sweden, eager to dismiss anything that contradicted the pursuit of herd immunity through mass infections. Last I saw it mostly laughed at publicly.

"Our new public health disease" seems to be doing an awful lot of work here. I mean, it is, but that would be news to the authorities.
No :)

This was all in all an excellent programme which also had a chat afterwards with very good questions and answers. A GP said a few weird things, otherwise it was factual, up to date from researcher Bruchfeld, doctor and LC patient Norén and a virologist I can't remember the name of.

Some respectful mentions of ME. Lots about PEM and POTS. A very moving case with a young girl with LC and PANS/PANDAS.

Criticism of the new guideline in Sweden for LC which is out of date and focused on rehabilitation. And strong advice to stay at home when sick to not pass it on and to take care of each other.

Really a pleasant surprise to see so much good information on Covid and Long Covid on TV!

I assume there will come some backlash.
 
Blog article by Staffan, a person in Sweden living with post covid. He's asking for better healthcare, more research, and layers of protection against infection. (ME is mentioned.) Worth the read :thumbsup:

Vi postcovidsjuka göms undan när ingen vill erkänna Sveriges misstag
https://medium.com/@by-the-wayside/vi-postcovidsjuka-göms-undan-när-ingen-vill-erkänna-sveriges-misstag-43d932f998d9

Google Translate, English ("We post-covid patients are hidden away when no one wants to admit Sweden's mistakes")
Is it still largely considered a social contagion phenomenon? Initially that's mostly what I saw out of Sweden, eager to dismiss anything that contradicted the pursuit of herd immunity through mass infections. Last I saw it mostly laughed at publicly.
@rvallee I think this blog article will give you a pretty good picture.

"Seeking healthcare for post-covid in Sweden today is like seeking care for diabetes and being met by healthcare professionals who have never heard of insulin, think you should stop thinking about food and where some doctors openly question whether blood sugar is real."
 
Blog article by Staffan, a person in Sweden living with post covid. He's asking for better healthcare, more research, and layers of protection against infection. (ME is mentioned.) Worth the read :thumbsup:

Vi postcovidsjuka göms undan när ingen vill erkänna Sveriges misstag
https://medium.com/@by-the-wayside/vi-postcovidsjuka-göms-undan-när-ingen-vill-erkänna-sveriges-misstag-43d932f998d9

Google Translate, English ("We post-covid patients are hidden away when no one wants to admit Sweden's mistakes")

@rvallee I think this blog article will give you a pretty good picture.

"Seeking healthcare for post-covid in Sweden today is like seeking care for diabetes and being met by healthcare professionals who have never heard of insulin, think you should stop thinking about food and where some doctors openly question whether blood sugar is real."
Thank you for sharing!

I see I misunderstood @rvallee 's question earlier about the situation in Sweden. I thought the question was about the one good and informative TV program, not the general situation. Thanks for clearing it up!
 
The latest episode of Karolinska Institutet's podcast Medicinvetarna is about long covid, PEM and GET, POTS and dysautonomia, pacing, the new guidelines for management/treatment, vision related symptoms, rehab, mentions that anxiety in post covid can be due to physical reasons, etc. :thumbsup: ME is very briefly mentioned.

54 minutes, in Swedish.

Medicinvetarna #154: Vad vet vi om postcovid?
https://ki.se/forskning/popularvete...ng/medicinvetarna-154-vad-vet-vi-om-postcovid
Auto-translate said:
Medicinvetarna #154: What do we know about post-covid?

Up to 150,000 Swedes are living with long-term serious problems after being affected by COVID-19, which means that the condition qualifies as a common disease. Science still lacks a clear picture of the disease's course or causal mechanisms, but there is hope. A drug trial is currently underway, with results due later this autumn. Listen to Dr Judith Bruchfeld, Chief Medical Officer and Associate Professor, talk about the current state of knowledge. This episode was published on 4 September 2024.

The realisation that COVID-19 could cause long-term severe symptoms came quite early in the first wave of the pandemic. As early as the summer of 2020, reports began to emerge of patients suffering from extreme fatigue, palpitations and brain fog long after the acute phase of the disease had passed.

Over the years, the diagnosis of post-covid has sometimes been questioned, but today up to 150,000 people in Sweden suffer from persistent symptoms, qualifying the condition as a widespread disease. For the individual, this means that life does not function as it did before the disease. For example, some are unable to work at all, or are forced to take part-time sick leave. The condition often affects multiple organ systems, which initially surprised healthcare professionals. Risk factors for long-lasting symptoms have been shown to be both the prolonged nature of the initial infection and the multiple symptoms experienced during the acute infection.

Judith Bruchfeld is a consultant and specialist in infectious diseases at Karolinska University Hospital and Associate Professor at the Department of Medicine, Solna, Karolinska Institutet. Her research has centred on tuberculosis for many years. During the COVID-19 pandemic, she helped to set up a special clinic for post-COVID patients and has continued her research on this topic.
 
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(Not ME specific.)

The Swedish Authority for Privacy Protection (Integritetsskyddsmyndigheten, IMY) issues administrative fines against two online pharmacies, for using the so called Meta-pixel on their website and transferring sensitive personal data to Meta.

Apoteket AB, gällande Meta-pixel
https://www.imy.se/tillsyner/apoteket/

Apohem, gällande Meta-pixel
https://www.imy.se/tillsyner/apohem/
IMY's investigation regarding Apotea is still ongoing, no decision yet:

Apotea, gällande Meta-pixel
https://www.imy.se/tillsyner/apotea-facebook/
 
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RME: Konferens 2024
https://rme.nu/aktivitet/konferens-2024/

Date: 9 October 2024
Registration deadline: 5 October 2024
RME said:
Program:

Endothelial dysfunction
Ingrid Gurvin Rekeland

Microcirculation, microclots in PASC and ME/CFS
Resia Pretorius

POTS – looking beyond sinus tachycardia
Artur Fedorowski

Neurovascular dysregulation during exercise in ME/CFS and Long COVID
David Systrom

Cognitive impairment in PASC and ME patients is mediated by orthostatic hemodynamic changes
Suzanne Vernon

Ongoing international treatment research
Jonas Bergquist, Ingrid Gurvin Rekeland
 
A podcast episode (in Swedish) by the podcast Rakt in i Väggen ("Straight into the wall"), about stress-related mental health issues. Sharing only for informational purposes, as I haven't listened to it myself.


Rakt in i väggen auto-translate said:
A podcast monologue by Johanna Skoogh on healing from fatigue and ME through a holistic review.

Johanna is a Medical Doctor, Medical Psychologist, Mental Trainer and Sensing Yoga Instructor. She was on sick leave for many years with severe fatigue diagnosed as ME which is a neurological disease. Through a holistic review of her life, she has managed to create change and great improvement and talks about what has helped her, including understanding her high sensitivity, daring to be vulnerable and self-hugs.

If you want to know more about ME, Johanna refers you to the following links:

- International information page on ME: https://me-pedia.org/wiki/Myalgic_encephalomyelitis

- National Association for ME Patients in Sweden: https://rme.nu/me/ [...]
 
Finland:

Kaikki sairaudet eivät ole samalla viivalla sairausetuuksia jaettaessa
https://www.satakunnankansa.fi/kolumnit/art-2000010690703.html
Auto-translate said:
Not all illnesses are on the same line when it comes to the distribution of sickness benefits

"In Finland, fictitious diagnoses of depression are made to secure patients' sickness benefits."

"Not all diseases and patient groups are on an equal footing when it comes to sickness benefits. When a disabled patient is repeatedly denied sickness benefits or a partially disabled patient is denied rehabilitation benefits, the system encourages the tacit acceptance of a "bogus" diagnosis of depression."

"For example, fatigue at work is not a reason for paid sick leave, but a doctor has to record it as depression or an anxiety disorder for sickness benefits.

The same applies to people with chronic fatigue syndrome. The same has happened to patients with long covid. In December 2022, YLE's MOT programme reported that patients have had to say they suffer from depression instead of long covid to get sickness benefits."
 
And this is how I got a diagnosis for severe depression. My doctor agreed that I'm not depressed but to apply for disability benefits it would be good to do it with a depression diagnosis. Well, my application got rejected twice, complaints got rejected and in the end I'm still diagnosed with depression! Great system.
 
Finland:

Kaikki sairaudet eivät ole samalla viivalla sairausetuuksia jaettaessa
https://www.satakunnankansa.fi/kolumnit/art-2000010690703.html
Thank you for sharing.

There was also a thorough article from Norway on Friday looking at the rise of illness and sick leave in the population after 2019. We have a harsh political debate now on having a too generous welfare system that people take advantage of. But it's the pandemic that's a new factor in recent years, not the welfare system with paid sick leave which we've had for decades. And as the article also points to, the increased work absence due to illness is an international trend.

Dag og Tid Ei skrantande folkehelse
google translation Ailing public health
 
And this is how I got a diagnosis for severe depression. My doctor agreed that I'm not depressed but to apply for disability benefits it would be good to do it with a depression diagnosis. Well, my application got rejected twice, complaints got rejected and in the end I'm still diagnosed with depression! Great system.
There's a huge issue in AI with the use of AI-generated data being used to train future AIs. Given how commonly AI hallucinates and gets basic facts or reasoning wrong, there is currently a huge amount of work going through how to make it work without creating a faster process of garbage data basically regressing AI models by feeding on its own garbage data.

And then there's medicine, where humans do that entirely as a choice because of prior expectations, largely based on doing the same thing and ramping it up to become standard practice. Over several decades, to the point where some of the data we have right now is nth generation of BS data feeding BS systems that regurgitate BS data to be used for future BS models.

Anyway it's weird how the fear is that AI will succumb to this process when humans do this with enthusiasm and in perfect awareness, or at least in conditions in which they can't possibly not know that mislabeling things, then feeding those mislabeled things into their own work, can only create a loop of garbage.

Even more so that this concern is over training future AI models. It hasn't happened yet. It's about preventing this problem. But humans can do this for decades entirely as a choice in a context where it leads to mass misery and death. In addition to stopping progress because fairy tales are so much more enticing than doing hard scientific work.

Which frankly makes me so much less concerned about the future of AI becoming stupid by feeding on its own supply of BS and other fears people have voiced. I'm far more concerned about past, present and future human stupidity willing to create such loops of industrial scale stupidity.

How valid are 'depression' research or clinical cohorts given this? Somewhere between 0 and 100%. Anywhere in-between. If it's even a real concept and not some short-hand for several issues that medical science hasn't figured out yet, which is the most likely possibility.
 
@rvallee well said. There's also the worrying trend lately how LLM's are being trained on data from Twitter, Reddit, Facebook and so on. I can't see better results coming from that either! Already people are getting injured or even probably killed by believing bad advice from AI. There has to be better ways to develop AI than the way it's been done at the moment! There's so much potential in it if it's done good. Perhaps not basing AI on human intelligence? Don't know how that could be done and if that would benefit us though.

We have this weird system here in Finland that you can get sickness benefits for only 1 year continuously. After that you either have to get disability benefits accepted or you have to register to the employment office and seek continuosly full-time employment. It's even formally told that we really are expected to do that (seek employment) even if we are disabled and unable to work while we apply for disability. In other words, it's a magic trick for how to make sick people look like they're just unemployed work seekers. And definately getting at least statistics wrong. Also unfairly making sick people have to "confess" that they're well enough to seek for jobs.

Which brings me to the less known third option that I'm personally guilty of using. If we're not able to get any kind of benefits, including employment benefits, then we are by law eligible for social security benefits which should be enough for rent, food etc. For basic living that is. So I refused to play their game and to register to employment office so I'm getting social security. Sure they keep sending me letters where they always remind me that I'm required to seek employment and failure to do that could result in them cutting my benefits for 20%(or 40% in some cases) for 1-2 months at a time blahblah. I've ignored everything for about 3 years now in which time they've only twice cut my benefits by 20% for 1 month.

Funny thing in that is that social security benefits are taxfree. For unemployment benefits you pay tax, probably around that 20%. So I'm actually getting better than if I'd do how they want us to do. Also in their way there would be the added burden of having to send job applications every month and prove that to them. Also possible benefit cuts for refusing to accept a job if offered. Of course the best course of action for everyone would just be to have a working disability benefit system! But probably someone is benefiting for the ridiculous system that we have now so we have what we have..

Probably a bit similar in other Nordic countries too?
 
@rvallee well said. There's also the worrying trend lately how LLM's are being trained on data from Twitter, Reddit, Facebook and so on. I can't see better results coming from that either! Already people are getting injured or even probably killed by believing bad advice from AI. There has to be better ways to develop AI than the way it's been done at the moment! There's so much potential in it if it's done good. Perhaps not basing AI on human intelligence? Don't know how that could be done and if that would benefit us though.

We have this weird system here in Finland that you can get sickness benefits for only 1 year continuously. After that you either have to get disability benefits accepted or you have to register to the employment office and seek continuosly full-time employment. It's even formally told that we really are expected to do that (seek employment) even if we are disabled and unable to work while we apply for disability. In other words, it's a magic trick for how to make sick people look like they're just unemployed work seekers. And definately getting at least statistics wrong. Also unfairly making sick people have to "confess" that they're well enough to seek for jobs.

Which brings me to the less known third option that I'm personally guilty of using. If we're not able to get any kind of benefits, including employment benefits, then we are by law eligible for social security benefits which should be enough for rent, food etc. For basic living that is. So I refused to play their game and to register to employment office so I'm getting social security. Sure they keep sending me letters where they always remind me that I'm required to seek employment and failure to do that could result in them cutting my benefits for 20%(or 40% in some cases) for 1-2 months at a time blahblah. I've ignored everything for about 3 years now in which time they've only twice cut my benefits by 20% for 1 month.

Funny thing in that is that social security benefits are taxfree. For unemployment benefits you pay tax, probably around that 20%. So I'm actually getting better than if I'd do how they want us to do. Also in their way there would be the added burden of having to send job applications every month and prove that to them. Also possible benefit cuts for refusing to accept a job if offered. Of course the best course of action for everyone would just be to have a working disability benefit system! But probably someone is benefiting for the ridiculous system that we have now so we have what we have..

Probably a bit similar in other Nordic countries too?
Thank you! It's so interesting to read the different arrangements for our neighbour countries.

In Norway you have one year sick leave as well, and then a four year period with benefits for work assessment where you are supposed to finish medical assessment and treatment and either get back to work or deemed as a candidate for disability benefits. But we have very long waiting lists for specialists/treatments and you often have to wait for many months for each appointment/treatment. So the four years are often insufficient. Some years ago the conservative government made you go one year without any support at all if you were still under assessment/treatment after four years. This was fortunately removed again.

In Sweden I think you are registered as unemployed after some months of sick leave?

In Denmark I don't know.

Politicians here are getting quite nervous about the increase of sick leave and want to cut benefits. They say compared with our neighbour countries we have much more on sick leave here and therefore people must be faking illness because of a generous welfare system.

But we have so different systems, so it's really hard to compare the numbers. In Norway you take sick leave from work if your children are sick. In Sweden they have about 90 days (?) you can take leave from work for each child if they are sick. We have a high percent of the population in the work force, and that itself is a reason for higher sick leave as no population is without illness/disability. So the more people in the work force, the more of the working people will not be able to work 100%. The long waiting lists for treatments and taking sick leave when you are not sick yourself, but need to be off work for instance for caring duties for family etc also skews the numbers.

I believe there are researchers who genuinely have tried to find out who in the Nordic countries have the highest number of sick people, but due to the different systems, this has been very hard to find an objective answer to.
 
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