What is missing is a demonstrable pathological tissue damage. And always will be missing if the basic research is not done, which it has not been so far. I wonder who benefits from that? Hint: Not patients.
this is posted on #millionsmissing norway; can't see the page so have no idea which particular 'event' it is referring to as it could be several! eta: found it, it's from this https://virology.ws/2023/10/09/tria...43pD8mZatJbDFbVHS_8q1CX5zDTpqezjt9kS3aXCf3Ef8
COVID 19 - assessment of Swedish response . Basically acknowledges they blew it https://www.nature.com/articles/s41599-022-01097-5
Many elderly people were administered morphine instead of oxygen despite available supplies, effectively ending their lives.
Basically the Swedish strategy in a nutshell: And the number of public health officers and other officials who have said that they'd also follow that strategy in the future says a lot about where public health is heading. Just like in evidence-based medicine, they pursued a race to the bottom and the bottom has won.
An article in the news today about an often used treatment for shoulder issues (calcium deposits specifically) that it turns out might not be very helpful. I specifically noted that at six months there were no difference between treatment and control groups (two types of sham treatment). Sounds familiar? Popular treatment for shoulder pain turns out not to work Edit: Thread on the study here: Ultrasound guided lavage with corticosteroid injection versus sham lavage for calcific tendinopathy of shoulder: RCT, 2023, Moosmayer et al
Follow up to this, it has been revealed that the wife has been institutionalised and spent time in rehabilitation and treatment travels and apparently she applied to an exception to avoid to pay a tax when selling her home (the rule is that you have to pay tax unless you have lived in the house/apartment/etc for the majority of the last two years). The exception she applied for is called a "brukshindring" which translates to "something that makes you unable to use". An example of this could be needing to be institutionalised or suddenly needing a wheelchair when the home cannot accomodate it. I wonder if this can set a precedence for other pwME if it the application was accepted, that would also mean that the tax office sees ME as a debilitating illness. At least they would seem abmle to look at the symptoms not just see the diagnosis and go "not serious enough". The defense chief's wife with new information in the housing case
(This is not recent news, but I don't know where else to put it.) There is a private ME clinic in Gothenburg, Sweden, at Citysjukhuset +7. I don't know when it opened. The doctor is Carmen Pichot, who used to work at the Gottfries Clinic and more recently at Bragée ME Center. Biomed, not bps. https://www.citysjukhuset.se/me-cfs/
Video recordings from the ME conference in Stockholm 11 October, hosted by RME, have now been published on YouTube: https://www.youtube.com/@rmesverige1475/videos This conference was arranged in collaboration with organisations from Norway, Denmark and Finland (doesn't say what orgs). You can order "material from the conference" here (doesn't say what kind of material): https://rme.nu/forskning/konferenser/
(Not ME) There was a really good article about a pwPOTS in a Swedish local paper last week. Umeåstudenten Emilia drabbades av mystisk sjukdom – svimmade fem gånger om dagen https://www.folkbladet.nu/2023-10-2...sk-sjukdom-svimmade-fem-ganger-om-dagen-6f193
There has been a fair bit of drama in certain parts of the Swedish ME community recently. More is expected today, so here's a bit of background information on the current situation. Swedish doctor/researcher Jonas Axelsson of Ameliekliniken, formerly known as RED Clinic, and Karolinska Institutet is currently being investigated by the media and reportedly also by the IVO (the Health and Social Care Inspectorate, a government agency responsible for supervising health care and social services). In the ME community he is known for offering large amounts of experimental, off-label treatments (antivirals etc) for ME and long covid, at his private clinic in Stockholm. The IVO investigation is reportedly a legitimate response to complaints filed by two patients who have suffered iatrogenic harm associated with the treatments offered by Axelsson. The IVO's investigation is ongoing, they have reportedly not reached a decision yet. Uppdrag Granskning, a Swedish television program focusing on investigative journalism, is reportedly currently working on an upcoming episode featuring Axelsson and his clinic. The newspaper Dagens ETC posted a video on Facebook and on Instagram on Wednesday (yesterday) announcing that they will publish an investigative news article about "the virus doctor" on Thursday (today). The post includes a short video of one person confronting another person about patients "losing their hair and teeth", and some screenshots that appear to be comments about symptoms written by patients. I'd say that the video has a very sensationalistic vibe. The screenshots in the video are from one or more private patient-led Facebook groups for the Amelie Clinic's patients, taken without the consent of the patients who posted the content/comments. At least some of the comments have been taken completely out of context (not related to the treatments Axelsson is offering), according to a person whose post was featured in the video. The ETC journalist allegedly joined the Facebook group(s?) some time ago, reportedly without informing neither admins/moderators nor group members of their intent and identity. She has reportedly also been sending unsolicited direct messages with intrusive questions to a number of patients, which has made some/many of them uncomfortable and upset. ETC is reportedly also silencing the cited patients' complaints, by deleting comments on their Facebook and Instagram posts. I've never been a patient of Axelsson's, so I'm not a member of the private Facebook groups where most of this drama has been playing out. I'm also not a member of the so called "patient organisation" (because their intentions and objectives don't align at all with my personal values and needs as a pwME) that is currently loudly and aggressively condemning the investigations of Axelsson. Uppdrag Granskning recently did an interview with the chairperson of the organisation about their social media posts on the investigations, according to a blog post by the chairperson. In the blog post they describe the questions they were asked by Uppdrag Granskning, based on which we learn that the people who made the complaints of iatrogenic harm to the IVO are feeling unfairly accused by the chairperson's posts and behaviour. We also learn that the chairperson has asked their members to report to them if a journalist tries to contact them ("Do you not support freedom of the press?"). Some of you might remember that Axelsson made the news in 2020 when he started a long covid research study without ethical approval. I obviously have no idea at this point if ETC's upcoming article is some kind of "witch hunt" or if it's an objective investigation of harms related to experimental treatments, or something else. We'll find out soon enough. A few personal comments. I'm not sure if maybe it's a Swedish thing, but from my personal perspective it seems that there's this kind of toxic "hero narrative" that is at the core of this drama? No one should be silenced or attacked for reporting iatrogentic harms. The Swedish ME community has an ugly habit and history of attacking anyone who says anything that can be perceived as negative about those who are viewed by the group as "heroes and saviours" (certain doctors, certain researchers, certain patient organisations and representatives, and so on). As if these people are infallible and cannot do anything wrong. And when they inevitably end up saying or doing something unhelpful or bad, everybody is expected to stick their head in the sand and pretend not to notice. Personally, I hate it. I feel it's incredibly important that we keep using our critical thinking, examine closely and carefully evaluate information also when it comes to our so called "allies", not just our enemies. Even if many people believe they have been helped by one doctor, we need to take any legitimate complaints against that doctor seriously, as well as any reports of harm associated with the experimental treatments he is offering. Iatrogenic harm can be a really big deal, and it's absolutely not okay to try and silence reports of harm.
Virusläkaren experimenterar på svårt sjuka: ”Han måste stoppas” https://www.etc.se/inrikes/viruslaekaren-experimenterar-paa-svaart-sjuka-han-maaste-stoppas Google Translate, English. ETC Instagram post about the article here, and Facebook post here, for those of you who want to read the comments. (Edited to add more auto-translated quotes.)
Thank you for the information and the background story @mango What a mess I'm so sorry Swedish patients lost their care at Stora Sköndalen which seemed serious and evidence based and a good start for a development of ME health care. At least that was my impression. And now it's just chaos, it seems. Do you think this is connected to the closing down of other private clinics with an offer for ME patients? There seems to have been no quality control of these offers? And now someone are trying to put together something from the scratch to offer ME patients within the public health care, just a few years after they closed Store Sköndalen. Maddening!
full article in english here The virus doctor experiments on the seriously ill: “He must be stopped” https://sweden.postsen.com/news/160...-on-the-seriously-ill-He-must-be-stopped.html
Finally some promising news from Denmark! The Minister of Health, Sophie Løhde says it's clear that ME patients feel they are not met in a good way in the health care system, and she is now funding a review of the latest international research into ME in order to see if the patients group can be helped in a better way. TVsyd Nu er der et lys i Marie Louises mørke tilværelse For some reason the link didn't go through automatic translation into English..
I hope your ME Associations will get a say in all this. It's easy for bad researchers to distort this process if given an opportunity.
Thank you @mango for all the background information! Even though I am part of the Swedish ME Community I have been out of the loop for a while. Appreciate this update a lot! Oh, that is interesting news! Is the patient organisation condemning the IVO investigations? That is odd! Where do they do that? I am not a member anymore either, for the same reasons. Where can one read this blog post? I wholeheartedly agree that this hero/savior narrative is prevalent and toxic, and I would say rather narcissistic at its core. What is most disheartening is that it seems to have taken over within the patient organisation. It is very sad indeed
Thank you, yes Stora Sköndal was a big loss for the whole Swedish ME community I honestly have no idea if this is connected to the closing down of other private clinics. I don't know what's happening behind the scenes, I haven't even heard any rumours. As usual nowadays the patient organisation RME doesn't share any information openly about their work, so I don't know if they have been or are involved in any way at all. Absolutely maddening, yes There's a news article from the Gothenburg area earlier this week, that says similar things are happening on the west coast now too. (However, in the case of Smärthjälpen, a privat clinic in Mölndal, I think it might be a good thing since they have a BPS approach.) ME-sjuka Marita i Hindås oroas av förändringar inom vården https://www.harrydaposten.se/nyhete...m-varden.68c9d896-a62b-442f-a5bc-a0622ff88185 It's a good article, worth a read. Google Translate, English
