20 year old Eline Leer-Salvesen is suffering from severe ME and has written an opinion piece in the newspaper Aftenposten. She did that by recording speak with her mother transcribing, and then Eline edited. She writes about her life and what she is missing out on, but also that being sick has taught her to be more grateful for the good things in life. - "I can think about that for an hour without break". Eg har ME i svært alvorleg grad. Her er noko eg vil du skal vite. google translate: I have very severe ME. Here is something I want you to know
Stor oförståelse kring trötthetssyndrom https://ekuriren.se/insandare/artikel/stor-oforstaelse-kring-trotthetssyndrom/jop67g8r
(Not specifically ME.) Gustav Nilsonne has been mentioned on this forum before, in relation to his Exhaustion Disorder ("burnout") research. "@GustavNilsonne: Swedish Medical Journal now publishing special edition on metascience (in Swedish ofc). I am happy to be one of the guest editors. Lots of interesting work highlithing transparency, reproducibility, responsible reporting of clinical trials, misconduct, etc:" Utmaningar för den forskande läkaren https://lakartidningen.se/klinik-oc...2023/05/utmaningar-for-den-forskande-lakaren/ ETA: All the articles in the series are available here: https://lakartidningen.se/tag/tema-medicinsk-forskning-i-fagelperspektiv/
There's a story on social media of a potential patient with severe ME that has been placed in a psychiatric institution in Norway I say potential as the person was on their way to get diagnosis but hadn't gotten it yet if I understood the posts. First shared by Eline Leer-Salvesen who wrote about Aurora who has been placed in a long term care home previously. Not the news I wanted when it's Norway's national day and a celebration of us as a country
Interesting blog post by @MittEremltage: Varför undrar så många svenskar om ME/CFS är en bluff? https://mitteremitage.wordpress.com...drar-sa-manga-svenskar-om-me-cfs-ar-en-bluff/ (I'm not sure if "fake" is the best translation of the Swedish word "bluff", in this context? Maybe "scam" would be better? Hoax, sham, fraud? I really don't know what the people googling this phrase are thinking or why.)
Googling to see if it is a Sham would fit well with a misperception of malingering, could be work colleagues or managers for example.
I would think "scam". I havent had the energy to read it, but based on how people in Norway think pwME are trying to scam others for the oh-so-fabulous secondary gains... I don't think it's been mentioned on here yet, but Nina Steinkopf wrote an opinion piece that was published on NTNU's own news site about how research on ME at the institution has been unethical. In this case the studies on the methods used at the Coperio rehab centre, where the researchers did not bring up their economical conflict of interest. It's been the most read piece for days now Uredelig forskning på sårbare pasienter Nothing new to readers on here though. Edit: One of the studies Steinkopf writes about is "Cognitive Behavioral Therapy Improves Physical Function and Fatigue in Mild and Moderate Chronic Fatigue Syndrome: A Consecutive Randomized Controlled Trial of Standard and Short Interventions", that received a correction adding the COI. This is discussed in the study's thread HERE.
Now in English translation: Fraudulent research on vulnerable patients quote: In a Norwegian ME study, the researchers failed to inform that one of the researchers had a strong financial conflict of interest. The study participants were not informed that they were being treated by students. Research ethics instances are aware of the matter but see no reason to take action. Are they more concerned with protecting their own than with research ethical principles?
Bragée Clinics have made the decision to close down ME Center, according to Björn Bragée on Facebook. More info in this forum thread: https://www.s4me.info/threads/swede...-the-bragée-me-center-2023.32049/#post-477338
There's been some drama regarding B12 and Bragée ME-center on social media the last couple of weeks. Patients are reporting that they are no longer allowed to get their usual B12 injections, and there have been plenty of rumours and speculations about the reasons why. Screenshots of conversations with Björn Bragée have been shared, while other patients have shared other reasons they apparently have been given by other doctors at Bragée ME-center (including vague references to "new research about increased risk of cancer" etc). Bragée Clinics made a statement about this on Facebook yesterday: Bragée commented on the increased risk of cancer in the comments below the post linked above, but they haven't yet shared any links to their sources, despite several people asking them to. (Some of you might remember how B12 was weaponized and used against the Gottfries Clinic by the BPS lobbyists some years ago. Would be interesting to know if they are involved this time as well, if B12 has been politicised again. Some patients have been told that the decision to stop prescribing B12 has been made by regional politicians.)
The editor of Khrono, and the journalist who has written more or less all of their stories on Lightning Process, have been interviewed on harrassment from pwME and the difficulties of writing about ME/CFS research. There is a lot of patient blaming and making themselves be without guilt (they write balanced, critical stuff, and patients are just impossible to talk to). Ba om å få slutte å skrive om ME-forskning for Khrono: – Plutselig kjenner man at det er nok Asked to stop writing about ME research for Khrono: - Suddenly you know that enough is enough
Some discussion on Twitter (the news site have not shared this article on their own Twitter page, I'm speculating but might be because in the article it says how much ME pieces create "twitter storms"?) Still, there has been discussions on twitter: Edit: The story is of course liked and shared by the usual suspects.
RME (the Swedish ME Association) has posted a video on YouTube (9 minutes) where their chairperson talks about the situation now that Bragée ME-center, ie Sweden's only ME specialist center, is being closed down. I'm too ill to watch, so I don't know what kind of info they are sharing. I haven't been able to find a text version to read, and comments are closed so can't ask them for it either. It has subtitles (in Swedish) though, maybe that's helpful for some people.
Opinion piece Sverige måste satsa på specialistvård för postinfektiösa tillstånd https://www.altinget.se/vard/artike...specialistvaard-for-postinfektiosa-tillstaand Google Translate, English
ME/CFS–utmaningar och möjligheter i Primärvården https://www.akademisktprimarvardsce...utmaningar-och-mojligheter-i-primarvarden222/
I've posted several times before about how ME and long covid have often been framed as a so called "cultural illnesses" in Sweden, especially in the media. Here's another example (not a recommendation, obviously) of how the same narrative and the same arguments are used against another diagnosis, gender dysphoria. This opinion piece is published in a Christan online magazine. Könsdysfori kan vara resultat av kulturell smitta ("Gender dysphoria can be the result of cultural contagion") https://www.dagen.se/debatt/2023/07/12/konsdysfori-kan-vara-resultat-av-kulturell-smitta/
What a dreadful piece. I agree there are patterns being repeated here. Sometimes it's rather obvious, as in this opinion piece a few years ago in a medical newspaper asking if gender dysphoria is the new ME. google translated quote: A persistent search for imaginary somatic explanations can bring the patients into a long-term course of symptoms, as we are seeing with ME. The hypothesis then becomes that the perception of illness stands in the way of treating the cause of the symptoms. Based on my views above, I have long thought that the ME epidemic will eventually culminate and be replaced by another, socially contagious condition. A chronicle entry in Aftenposten therefore became thought-provoking. Here, Anne Wæhre and Kim Alexander Tønseth at Rikshospitalet claim that Norway has an "explosive increase" in the number of teenagers who are dissatisfied with the gender of their own body. The condition can be called gender dysphoria or gender incongruence.
I don't know about the rest of Scandinavia, but there are many people with overlapping opinions on the causes of ME and gender dysphoria here, especially in kids. It's all anxiety and depression and should be treated with CBT.
So apparently there is an "epidemic" of brain fog in Sweden, some 200K by one estimate, and they are "super puzzled" as to why. There seems to be some mention of a possible link to "so-called post-Covid syndrome", or something like that. Sweden may be famous for having infected their whole population from the start, but every country followed suit anyway. Oh, did I say brain fog? I guess it must be "hand stuck on forehead syndrome". It really is "Boom time!" for the business of rehabilitation. Great, publicly-subsidized business thanks to a policy of mass reinfection creating an endless stream of business. The government is both creating the demand and paying for the supply. Amazing. All business here, and about as good as Musk's takeover of twitter all things considered, turning billions into, well, a much smaller number.
