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/
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
On Swedish TV tonight, 19 August: Fråga doktorn SVT1, 19 aug kl 18:45-19:30 https://www.svtplay.se/fraga-doktorn
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 Criticism of the new guideline in Sweden for LC which is out of date and focused on rehabilitation.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 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!
(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/
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. 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
IMY's investigation regarding Apotea is still ongoing, no decision yet: Apotea, gällande Meta-pixel https://www.imy.se/tillsyner/apotea-facebook/
RME: Konferens 2024 https://rme.nu/aktivitet/konferens-2024/ Date: 9 October 2024 Registration deadline: 5 October 2024
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.
Finland: Kaikki sairaudet eivät ole samalla viivalla sairausetuuksia jaettaessa https://www.satakunnankansa.fi/kolumnit/art-2000010690703.html
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.
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
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?
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.
The BPS lobby has shifted gears in Sweden in the past year and now we suddenly have received new national guidelines from Socialstyrelsen, which recommends GET. How did we end up here? In my new season of the podcast Maran, I look for answers to this. I've made a new thread for Season 2 here: https://www.s4me.info/threads/maran-season-2-how-did-we-end-up-here.40230/
