RME (the Swedish ME Association) has published a statement on their website, in response to the public conversation and investigative articles about the Amelie Clinic. Debatt i media om behandling av ME https://rme.nu/debatt-i-media-om-behandling-av-me/ Personally, I find it incredibly worrying and disappointing that RME yet again is discouraging transparency and essential discussions about patient safety, the laws and ethics and methods of scientific research, the importance of high-quality research and the problems and risks with low-quality research, the rights of study participants such as informed consent, the importance of reporting and documenting harms and adverse events, as well as the effectiveness and risks of experimenting with off-label treatments. The current discussons on Swedish social media make it very obvious that many pwME and others don't understand why Axelsson's way to work at the Amelie Clinic is problematic. I wish RME would have seized this opportunity to educate people, instead of trying to shut the discussion down. Super disappointing to see yet another statement from RME unreservedly endorsing nonevidenced treatments for ME. Super disappointing that RME are not condemning the intense hate and threats on social media towards the two harmed patients who filed complaints to IVO, and not condemning the hate and threats toward the journalists and their employers (SVT, Uppdrag granskning, ETC) either. Also, what is the statement about risk of suffocation based on? Note the date of the published statement: the day before the news articles were published.
Thanks for sharing @mango I agree! It’s worrying and very disappointing to read RME:s statement . Seems like a lot of lobbying has been going on... Almost like another person from another patient organisation is speaking. They steer further and further from the goals and values they once had, so saddening to watch. "It is worrying that doctors may hesitate to help patients without clear evidence of medical treatment". This stood out to me. That clinicians in primary care want to follow regulations and guide lines for evidence based treatments is what's worrying to them? Talk about getting the wrong end of the stick. Imagine that Sweden actually had two decent ME-clinics within the public health care system just a few years ago. Stora Sköndal was perhaps the best we ever had, albeit with some flaws. And now Bragée is closing shortly and what's replacing them is, though very suitably placed, a Clinic that will provide even less in terms of long term health care management, support and treatment of patients. If any. Things as urgently needed as correct diagnosis and thourough investigations and high quality biomedical research. I don't know if RME had much of a say in the decision, in today’s political climate and economic situation perhaps it’s logical. But bleak and disappointing nonetheless. (Yeah, that about suffocation was bewildering!!?? Never heard of!)
VISS Stockholm, a website with guidelines for primary care in Region Stockholm (but used by healthcare professionals all over the country), has updated their page for ME/CFS to add the following note: https://viss.nu/kunskapsstod/vardprogram/me-cfs
So a while ago large headlines proclaimed 1/3-2/3 of Norwegian students were psychologically ill. There's been massive criticism of the methods used in the study. Too much for me too link to everything, but here are two articles, one from the most ardent critics and a reply from the authors (from the Norwegian National Institute of Public Health) The alarm about Norwegian students' mental health is full of research errors Unreasonable method criticism from Lien, Reitan and Lund Some well known issues we know from ME research.
Given the way things are going in evidence-based medicine, and especially around health, it's almost surprising they didn't find that 3/2 were "psychologically ill". Getting such absurd results as 2/3, or even 1/3, and not concluding that the assessment is obviously wrong is the real problem. Mental illness has been defined so loosely that given enough attempts to assess it, every one would rate as such. The whole concept has been rendered meaningless. And the same people who assess this and think it's valid data would pretty much universally agree that we must be psychologically ill, since there are no valid tests for our illness, while they themselves proclaim, without a single valid test, such obviously outlandish data.
And sadly the critics have no problem believing high numbers of chronically ill people have depression and/or anxiety, the criticism comes when it's a group they cannot phantom is having problems.
Andra patienter får vård på postcovidmottagningen https://www.mitti.se/nyheter/andra-patienter-far-vard-pa-postcovidmottagningen-6.3.188705.ffca82195e As some of you might remember, when they closed down Stora Sköndal ME/CFS specialist clinic (that was located at the neuro rehab clinic), some of its former employees, researcher/dr Per Julin among others, started working at the post covid clinic instead. And now the post covid clinic has started accepting ME patients as well. So I guess the circle is closed, but in a weird way...
A really unexpected and weird way! I think I might actually ask for a referral. Since I have developed new symptoms after covid but at the same time improved in my usual ME-symptoms. Maybe they can find something that's treatable. And if I'm lucky I get to meet Per Julin!
Vårdgivarguiden Region Stockholm: Mottagning tar emot fler postinfektiösa tillstånd https://vardgivarguiden.se/nyheter/2023/december/postcovid-huddinge/ It doesn't say if they accept referrals from other regions than Stockholm. Sounds like they don't accept self-referrals, which would be a problem for lots of patients in several regions where it's extremely difficult or impossible for pwME to get a referral from primary care.
@MittEremltage has written a great follow-up piece, after Britton was interviewed on the radio last week. The radio show was about health anxiety. Nej. ME är inte en funktionell sjukdom https://mitteremitage.wordpress.com/2023/12/15/nej-me-ar-inte-en-funktionell-sjukdom/ Do click through and read the whole blog article: Google Translate, English
Another great piece by @MittEremltage, about RME's (the Swedish ME Association) problematic response to media's investigation and reporting on the Amelie Clinic. Vem står upp för den som skadas i vården? https://mitteremitage.wordpress.com/2023/12/10/vem-star-upp-for-den-som-skadas-i-varden/ "If even patient organisations do not stand up for people who are harmed in healthcare, but rather protect their doctors, who will? How can specialised ME care be safe if we don't allow it to be scrutinised? Expecting the media and authorities to scrutinise all other care, while acting as if ME care is off-limits, is actually ridiculous." Do click through and read the whole piece: Google Translate, English I share @MittEremltage's views and opinions on this completely, and I stand with her. Sadly she has been the target of so much ugly and unfair criticism and ad hominem attacks, especially lately, for simply telling it like it is, digging out and presenting facts, and highlighting some really serious issues that are currently affecting the whole Swedish ME community. Some very loud voices have even been trying hard to silence her (toxic positivity sucks, and it does so much harm). I'm immensely grateful for all the incredibly important and valuable but difficult and thankless work she is doing. Thank you so much, @MittEremltage
functional illnesses being characterised by the fact that they are made worse by exertion. ...people with these diseases can return to a normal life with the help of pacing. Pure sophistry and brazen hijacking. Words cannot mean anything the author wants them to. You cannot just arbitrarily re-define, re-attribute, and re-label. What dishonest games with words like this are trying to do is set it up so that whatever the explanation turns out to be it will still be classed as a 'functional' disorder.
They do accept self-referrals. It says on their website that they treat them like any referral: "Reception Post-infectious diseases at Karolinska, formerly Postcovidmottagningen, receives patients in need of highly specialized examination. Our reception's main task is to investigate and diagnose and recommend treatment for patients who have already undergone a basic examination in primary care. It is therefore not certain that you can receive care at this reception. To come to us, your GP needs to come in with a referral. You can also submit a self-referral yourself, see link" https://www.karolinska.se/for-patie...postinfektiosa-sjukdomar-mottagning-huddinge/
This is not about ME but about discrimination and errors in medical records, which is something I think most of us can relate to. In these two cases the healthcare system in Sweden is being being criticized and fined for misgendering patients. Vårdpersonal felkönade patienter i journalanteckningar https://www.do.se/om-do/pressrum/ak...nal-felkonade-patienter-i-journalanteckningar A news article as well: Patient kallades fel pronomen i journal – Region Norrbotten bötfälls https://www.svt.se/nyheter/lokalt/n...pronomen-i-journal-region-norrbotten-botfalls Submitting a complaint about discrimination takes a lot of courage and the process can be very frustrating and disheartening, but it's an important way to try and keep the people in power accountable. Respect.
Hanne Kjöller comments on the Amelie Clinic in dn.se... Hanne Kjöller: Kliniken låter dig betala tusentals kronor – för vård seriösa läkare aldrig hört talas om https://archive.is/EOpsj
Not ME. Anställda på Sahlgrenska blev mystiskt sjuka – nu vet de varför https://www.dn.se/sverige/anstallda-pa-sahlgrenska-blev-mystiskt-sjuka-nu-vet-de-varfor/
