News from Scandinavia

Sean said:
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.
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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.

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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 :)

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Kalliope said:
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 :)
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This made me happy :)
 
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/
Google Translate said:
Joakim, 36, has lived in a dark room for 12 years: "Torture"

Joakim wanted to become a film director and had started improving his grades at Komvux [Municipal adult education] to be able to apply to film school. Then he fell ill with ME.

He spends every day in bed in a pitch black room. He has been doing this for twelve years.

After the municipality cut Joakim's home service hours in half, his spark of life is fading. He needs to talk to other people and get help writing.

- It is absolutely crucial for my survival. That I must somehow get out of the darkness. Escape. You have to exist somewhere.
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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

Long term chronic fatigue and pain are no longer medically unexplained, but a result of complex BPS interactions.
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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.
 
Kalliope said:
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).
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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 :(
 
Midnattsol said:
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 :(
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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
 
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Kalliope said:
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).
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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.
Google Translate said:
- The measures taken within the framework of the National Board of Health and Welfare's and the Swedish Social Insurance Agency's joint assignment are considered to be of great importance for people with ME/CFS, postcovid or other symptom-based diagnoses. The government wants to ensure that the measures taken have the intended impact on the proceedings, says Ardalan Shekarabi.

The Swedish Social Insurance Agency and the National Board of Health and Welfare have previously been commissioned to develop the health insurance procedure in dialogue with the health service.

The Swedish Social Insurance Agency and the National Board of Health and Welfare have taken important measures that are important for individuals with, for example, an ME diagnosis. Through the addition that is now being made to the assignment, the government wants to ensure that the measures are implemented in the procedure to increase safety for patients with one of the diagnoses ME/CFS or postcovid or some other symptom-based diagnosis.

From 15 March, new rules apply in health insurance. The assessment of the ability to work against normal work that must take place after day 180 in the case of illness must be postponed if there are compelling reasons to suggest that the insured will return to work with the employer no later than day 365. The person on sick leave thus has better conditions to undergo care, treatment and rehabilitation to be able to return to work. Unlike the previous rules, the new evidence requirement also applies to symptom-based diagnoses such as ME/CFS or postcovid.

The assignment must be finalized no later than October 15, 2021.
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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.

mango said:
Today, the Court of Appeal hearing begins about the high-profile case of Richard Lundgren who helped his seriously ill wife to die. The district court sentenced him to 1.5 years in prison for manslaughter, but the verdict was appealed by both sides. Now the defense lawyer Tomas Bodström wants this not to be seen as a criminal act and that his client should be acquitted completely.

https://etidning.allehanda.se/369/Tidningen-Angermanland/329723/2020-09-14/r/4

https://www.tv4play.se/program/nyheterna/13291147

https://www.tv4play.se/program/nyhetsmorgon/13291199
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:cry::(
Hjälpte sin fru att dö – HD tar inte upp fallet
https://www.svt.se/nyheter/lokalt/vasternorrland/hd-tar-inte-upp-dodshjalpsdom
Google Translate said:
Helped his wife die - The Supreme Court will not address the case

The Supreme Court (HD) does not grant leave to appeal to the man in his 60s who was sentenced to one year in prison for murder after helping his seriously ill wife to end her life.

The Court of Appeal's ruling from October 2020 is thus upheld.

The wife had been ill for several years and had herself stated that she wanted an end to her life. The same night that the man gave her a lethal dose of morphine, in March 2019, she recorded a farewell speech and then made a suicide attempt. It was after this that the man injected the morphine.

Claims aiding and abetting suicide

The incident took place in the couple's home in Nordingrå in Kramfors municipality. The man acknowledged the circumstances but denied any wrongdoing.

- In the situation she was in, she must get that help, he has previously told SVT Västernorrland.

In the appeal to HD, the man's defender Thomas Bodström demanded that the convicted person should be released in the first instance as his act should be regarded as aiding and abetting suicide, but this will not be the case.

"The Supreme Court has reviewed the material. There has been no reason to issue a trial permit ", writes HD in its decision on Wednesday.
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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.
 
rvallee said:
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.

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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 :)
 
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