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.
