but also our researchers' freedom to choose their own issues, their methods and to freely publish their research. No, you do not have the right to choose your own methods.
Apparently in Norway academics do. He repeated that tonight in this tweet. (Translation by me): "Criticism and factual debate is for granted, but also the freedom our researchers have to themselves choose their issues, their methods and to freely publish their research. An increasing number of subject areas are becoming very inflamed in the public debate. This is a development that should worry us." Then he links to the article where he as head of Oslo University offers support to Wyller, apparently believing he is supporting a researcher from harassment, which isn't the issue at all.
I answered Stolen with this tweet, I have been tweeting a lot this afternoon to explain “our side” “Criticism is not for granted, sometimes it is considered harassment by someone. But otherwise I agree. The internet probably has a lot of the blame, easy to write where you otherwise did not say anything externally before. We need to find ways to deal with it.” And he liked my reply.
Biology professor Kristian Gundersen has been active again in the ME debate since the latest article with Wyller accusing ME patients to scare researchers from the field. Gundersen recently shared the Reuters article and received a reply from Sten Helmfrid. Then the Canadian Long Covid researcher Simon Décary jumped in, and his tweet was heart warming to read. Just wanted to share
No, Dr Gunderson, campaigners fear that pressure from scientists has begun to show in the wording. You need to get hold of the right end of the stick.
Paywalled sympathetic article in a Swedish newspaper. Joakim, 36, har levt i ett mörkt rum i 12 år: ”Tortyr” https://www.expressen.se/premium/nyheter/joakim-36-har-levt-i-ett-morkt-rum-i-12-ar-tortyr/
Depressing editorial in the journal for the Norwegian Medical Association. LP-coach Live Landmark used to be a regular contributor to this journal, and I wonder if the editorial might be part of an ongoing campaign to secure the planned LP-study. The text is both in Norwegian and English version. Title: Constrained research Quote: Research on controversial topics such as climate, gender, predator culling, nutrition and alternative medicine appears to be particularly susceptible. For many years now, researchers conducting both Norwegian and international research related to CFS/ME have been subjected to frequent and intense pressure, harassment and threats (6, 7). And it is not only the researchers themselves that are exposed to this treatment; funding providers are also attacked when the activists do not consider them to be aligned with their agenda (8). Demands have also been made for entire research communities to be closed down after conducting research or publishing guidelines that do not give the ‘right’ answers, as exemplified by the petition against the National Competence Service for CFS/ME (7.8). The patients’ association itself, the Norwegian ME Association, has refused to say whether its members are activists or are coordinating the submission of complaints (9). It also managed to bring the curtain down on a meeting in a public academic and research forum because they did not like the topic the therapists planned to discuss (10).
From paragraph 1 in @Midnattsol 's post #1280 No. They are still medically unexplained. There are BPS theories which are unproven and unfalsifiable. There are 30+ years of history that demonstrates that therapies based on these theories do not work. PACE & FINE proved they do not work. Hand waving at the complexity of it all is no distraction from the gaping gaps in your logic.
Using the article where Skei (Wyller's boss) is criticising activists for the fact that he/Wyller did not get funding for an LP study is an interesting choice since Forskningsrådet wrote a reply to that article a few days later saying there had not been "too much patient involvement" and that they had not been pressured into not funding the study. This is how misinformation spreads
Yes, but take heart. It's not going to do their careers much good if they go around making claims like that against The Research Council of Norway. Just like those now attempting to say NICE have been pressured by the patient group, all they will succeed in doing is smearing themselves. They are advertising that their work doesn't stand up on it's own merits, that they can't handle and address the fact their work is not up to par preferring to to play the victim instead. Not only are they behaving like stroppy teens not getting their own way, they are actively dissing the professionals who make decisions on funding. This now means that should Norway's Research Council fund any below par work by them in the future, patients will have the right to point the finger and say that the Council have yielded to pressure from them. Silly. Edited to correct autocorrect
The amount of projection in this editorial could light up the Sun with its brightness. It shows how the process of otherization works, how patients can be entirely dismissed by being arbitrarily classified as non-patients, allowing to speak of "agendas" rather than what is driving everything we do: need. This is a dangerous as a legal system that can declare people non-citizens arbitrarily and deprive them of rights. Absurd that this goes on in health care at this late stage.
The Swedish government announced today that it is assigning the Social Insurance Agency and the National Board of Health and Welfare to "further develop the health insurance system in collaboration with the healthcare system". Well, it's about time! pwME have been horribly let down and tortured by the Social Insurance Agency over and over for more than 15 years now. Lots of people have died or had their lives completely ruined because of their vile policies. It's obviously too early to tell if this will actually make a difference for the better in reality, or if it's just more empty words. Regeringsuppdrag till Försäkringskassan och Socialstyrelsen om säkrare handläggning i sjukförsäkringen https://www.regeringen.se/pressmedd...n-om-sakrare-handlaggning-i-sjukforsakringen/
Trigger warning: death, suicide. Hjälpte sin fru att dö – HD tar inte upp fallet https://www.svt.se/nyheter/lokalt/vasternorrland/hd-tar-inte-upp-dodshjalpsdom
Audio interview (4.5 minutes, in Swedish). A person with ME talks about how the Social Insurance Agency often wrongly denies very ill people so called sickness compensation (ill health retirement). She did a great job explaining what it's like living with ME Anna-Carin är en av många som nekas sjukersättning https://sverigesradio.se/artikel/anna-carin-ar-en-av-manga-som-nekas-sjukersattning
Tidsskriftet has published a reply to their editorial, google translate: https://translate.google.com/transl...ftet.no/2021/03/kommentar/nyansering-om-mecfs And nother somewhat related news, academic freedom has yet again been the topic of an article by headmaster at UiO in Khrono, but this time ME/CFS was not used as an example (Khrono kindly inserted the recent articles anyway. Out of the three recent times Stølen has written about academic freedom, he has used ME/CFS twice as an example, so I'm glad it was possible to not do so this time.
I don't know what position that person would take on that debate but this may as well be about the BPS model and this very debate about "silencing" people who can't shut up and hold all the power: https://twitter.com/user/status/1375258503296675843
It's difficult to read through this thread having to translate every tweet. I think this is a minister? Opposition? Not sure. Anyone who speaks the language can clarify? Looks Swedish. https://twitter.com/user/status/1374719098475712513
It's the Swedish Minister for Social Security tweeting about the recent news that the government assigns the Social Insurance Agency and the National Board of Health and Welfare to secure support for patients suffering from among other Long Covid and ME. The news was shared by @mango in this post
A popular Swedish influencer/mum blogger is writing a series of blog posts about her live-in boyfriend who has ME. Hur Niklas blev sjuk i ME del 1 – den nedåtgående spiralen https://vanjawikstrom.motherhood.se/me/hur-niklas-blev-sjuk-i-me-del-1/ Hur Niklas blev sjuk i ME del 2: vändningen! https://vanjawikstrom.motherhood.se/me/hur-niklas-blev-sjuk-i-me-del-2-vandningen/
