This was a very welcome rarity from Denmark. Fanø municipality offers their apologies to a family with a severe ME sufferer for not receiving the help they needed. Ugeavisen: Sejr for syg datter i ME-sagen efter fire år: Fanø Kommune erkender fejl og siger undskyld google translation: Victory for sick daughter in ME case after four years: Fanø Municipality admits mistakes and says sorry The admission and apology is very clear in a letter that Fanø's mayor Sofie Valbjørn and the now resigned municipal director Vibeke Kinch have sent to Vibeke and Esben Ilsøe Gustavussen after a meeting between the parents and the two municipal top people. The letter, in which the mayor and municipal director thank you for a good meeting, states, among other things: - You have been through an incredibly difficult period in your life. Not only do you have a very ill daughter who you have to take care of, you from Fanø Municipality have not been met with the understanding you could rightly expect. You have experienced your suspicions and not listened. In the letter, the mayor and municipal director also write: - When we look back at the process today, we can see that Fanø Municipality, instead of focusing on Marie Louise's functional level and thus her and your need for help, has focused too much on uncertainties around the case. And unfortunately also on whether you were telling the truth or not. The apology in the letter is as clear as the acknowledgment of errors and omissions in the proceedings: - We would like, as the top management in Fanø Municipality, to take responsibility and give you our unreserved apology for the case processing you have been subjected to, the letter reads, before the mayor and municipal director end with a hope of jointly with the parents to create a trusting and good collaboration for the benefit of their seriously ill daughter.
Very cautiously, and only with a strong case for showing reason for concern imo. Could easily backfire if done in a careless manner (and many people in medicine would hate patients daring to lobby in a reasonable and well justified manner on a topic like this).
The appeals court has shortened the sentence to 12 months. The defense lawyer intends to appeal again, arguing that his client should be acquitted. More info in the following news articles: https://www.expressen.se/nyheter/krim/han-gav-sin-sjuka-fru-dodsspruta-vill-frias/ https://www.aftonbladet.se/nyheter/a/Ga1pwB/sankt-straff-for-drap-pa-me-sjuk-fru--overklagar-till-hd
An opinion piece written by the counsellor at Bragée ME-center. Aftonbladet: ME-sjuka tvingas leva helt utanför samhället Nu måste Försäkringskassan bli mer human https://www.aftonbladet.se/debatt/a/aP2mVd/me-sjuka-tvingas-leva-helt-utanfor-samhallet Google Translate, English ("ME patients are forced to live completely outside society") ETA: ETA:
Sten Helmfrid has published an article on why ME/CFS is a distinct clinical entity, separate from unexplained chronic fatigue. The abstract is in English, but the text is in Swedish. https://www.researchgate.net/publication/344465562_Vad_ar_MECFS_och_varfor_ar_det_en_klinisk_entitet Alternative download link: https://www.dropbox.com/s/qurr5i8jnend5g7/ME-CFS är en klinisk entitet R1.pdf?dl=0 https://twitter.com/user/status/1312718080532008960 https://twitter.com/user/status/1312718197955624960 https://twitter.com/user/status/1312718283762696193 https://twitter.com/user/status/1312718641545252865 Here's a thread about the book he refers to in his tweet: https://www.s4me.info/threads/trött-hela-livet-sjukdomen-me-jörgen-malmquists-book-on-me-cfs.16517/
Great read. A proper translation to English would be handy. Nice summary of historical facts, and what a contrast to Reimer and Malmquists ideology-driven and rant-like approach. It is a shame that the ones with no merits on ME, but so in need of attention, often gets that attention. Many patients are familiar with the content of the paper, but always good to see it tied together like this. I especially liked the “Case definition”-part, the challenges when diagnosis is based on symptoms, and the highly relevant analogy to Covid-19, the early outbreak in Wuhan and doctor Li Wenliangs approach (before the genetic code was known). So this is just another opportunity to stress how exceptionally bad and inappropriate the Oxford-criteria are for diagnosing anything at all.
Aftonbladet: ”Tro, hopp och kärlek”-prästen om sjukdomen: ”Ändrat livsstil helt” Åsa Meurling drabbad av kronisk trötthetssyndrom https://www.aftonbladet.se/nojesbla...lek-prasten-om-sjukdomen-andrat-livsstil-helt Google Translate, English
One of the biggest newspapers in Denmark, Politiken, has picked up this story and is featuring it today with three articles. All behind paywall, but here's a hastily translation of the headlines - They were accused of incest and abuse of their daughter Marie Louise, who for four years in a row has been lying in a dark room. Now they're receiving an apology Article here - For third year in a row Marie Louise is lying in a dark room Article here - Norwegian professor has met many like Danish Marie Louise: "It was a shock. Some are so ill they're almost in a coma" Article here (interview with prof. Saugstad).
A bed bound/severely ill pwME in Sweden was admitted to hospital. The home care service kept visiting her house several times over a number of days, but they didn't notice that she wasn't there. They didn't check the bedroom even though the door was wide open, not even to say 'hello' or 'goodbye'. They didn't even notice that there were no dishes to wash or rubbish to take out. They just left. https://twitter.com/user/status/1318934586756337670
The last two articles were first published in March 2019. The first one is new and I didn't get a paywall. Excellent article, sensitively written. It says the earlier feature from March 19 was one of the most read stories of 2019. Go give them some traffic on this one, too, keeps the editors interested (Politiken is widely read so continued coverage there would be good). Those who don't read Danish will have to do a bit of copy & paste into google translate, it's too long for a simple page translate, but it's worth it. But holy crap what a haunting fucking nightmare - pardon my language, I don't usually swear online, but here it's the only reasonable reaction. A very strong and brave family to stand up to not just the sustained malpractice by the authorities for all those years but also the vilification by their local community (who believed the authorities - and a certain P Fink). So pleased the family finally has a little light at the end of the tunnel. Less pleased that the bigger picture in Denmark hasn't changed much despite Parliament's decision to reclassify ME from functional disorder to biomedical as per WHO; treatment remains CBT and GET. Argh. And here some local doctors completely loose the plot. I find it extraordinary that they feel they must bring in the "big guns" to convince the locals of their point of view irrespective of the interest of the patient or the ensuing fully predictable witch hunt on the parents.
It is insufficient to be "awarded the help she and the family have badly needed since 2016". What about the monetary compensation for the abuse at the hands of doctors and local authorities? They seem unable to sort themselves out. It may take their insurance providers to do the job.
A number of posts about Björn Bragée's appearance on tv, talking about his research on ME/CFS and hypermobility have been moved to this thread: Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al
[Paywalled] Folkbladet: Löfte: Länet får ME-mottagning – möts av skepsis ("Promise: The county will get a ME center - is met with skepticism") https://www.folkbladet.nu/2020-10-31/lofte-lanet-far-me-mottagning-mots-av-skepsis A good biomedical ME center in Västerbotten (a county in the north of Sweden) would be immensely valuable and important, seeing that there are currently no ME centers north of Stockholm, and long-distance travel is simply not an option for many pwME. The news article linked above is unfortunately paywalled, but here's a Facebook post by ME-vård saknas that tells you the important bits: Well done, Malin! She's such a brilliant advocate Thank you! ETA: It says in the news article that "the estimated cost for the ME clinic is around 3 500 000 SEK".
The Norwegian ME Association organises an annual campaign each November to increase knowledge about ME. This year's theme is "Children and adolescents with ME" and the campaign has been moved online with among other several webinars. Most of the webinars will be in Norwegian. One is about carers/family of children with ME by Mette Schøyen, contact person for children and adolescents in the Norwegian ME Association (17. Nov at 14.00) One is about children with ME and social life by paediatric neurologist Kristian Sommerfelt (8. Nov. at 19.00) Two webinars are about school by nurse Elin Myklebust and specialist in psychology Ketil Jakobsen (10. and 12. Nov. at 14.00) The last webinar is in English and will be held by professor Peter Rowe. The webinar is titled: Management of paediatric ME/CFS: insights from the Johns Hopkins clinic (24. Nov at 14.00) More information and free registration here (in Norwegian) https://www.me-foreningen.no/ressurser/kunnskapskampanjer/kunnskapskampanjen-2020/ All webinars will be uploaded later and available for everyone.
Last month at its national meeting, the Norwegian ME Association unanimously decided upon the following demands: (google translated) The national meeting of the Norwegian ME Association therefore requires the following: A distinction between ME with PEM and other forms of fatigue syndrome at all levels in the health care system and other public bodies. In the discussion and description of the disease ME with PEM, only the term ME is used. Assessment of ME shall be made in accordance with the Canadian consensus criteria or the more recent international consensus criteria. A new national guide for ME is being prepared based on research on ME that uses these criteria and/or that PEM is the cardinal symptom. A separate national competence service for ME will be established, separate from the current National competence service for CFS/ME. More information at their website here (in Norwegian) - google translation here
The Finnish Medical Society Duodecim recently published their ME/CFS draft guideline ("Good Practice Consensus Recommendation"). Comments can be submitted through a form on their website. Deadline is Friday, 4 December 2020. Thread here: https://www.s4me.info/threads/finni...eline-draft-published-for-consultation.17730/
The Norwegian ME Association is now launching a bi weekly news summary in Norwegian. In this first news summary they write about the NICE guidelines draft the approval for the Lightning Process study by the Regional Committees for Medical and Health Research Ethics the potential biomarker from the Canadian Collaborative Research Center COVID-19 and ME The Norwegian Labour and Welfare Administration and work assessment allowance News from the Norwegian ME Association ME-nyheter: Uke 46 og 47 google translation: ME news: Week 46 and 47
