News from Scandinavia

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
 
(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:"
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Utmaningar för den forskande läkaren
https://lakartidningen.se/klinik-oc...2023/05/utmaningar-for-den-forskande-lakaren/
Auto-translate said:
[...] Today's enormous research output has made clinical practitioners increasingly dependent on research reviews and clinical guidelines. However, the process of synthesising knowledge can be undermined by conflicts of interest and bias. Systematic reviews and meta-analyses rely on comprehensive reporting of study results, regardless of the nature of the findings. However, it is still common for 'negative' results to go unpublished, so treatment effects tend to be overestimated in meta-analyses.

How a researcher chooses to analyse data is also important. There may be considerable scope to analyse the data until a result is reached that is desirable for some reason, for example because it shows a statistically significant effect. Such analytical flexibility combined with selective reporting further contributes to the overestimation of effects in medical research.

Metascience is the branch of research that uses quantitative empirical methods to scrutinise research itself: how it is conducted, reported, funded and evaluated.

This thematic issue addresses a series of topical meta-science topics and aims to draw the attention of doctors and researchers to challenges related to transparency and reproducibility in today's medical research.
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ETA: All the articles in the series are available here:
https://lakartidningen.se/tag/tema-medicinsk-forskning-i-fagelperspektiv/
 
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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 :cry:
 
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/
Why do so many Swedes wonder if ME/CFS is fake?

[...] "ME/CFS fake" turns out to be the fourth most common Swedish search on the subject, with 320 searches per month for that particular phrase. [...]

I really wonder what Sweden's dominant results are due to. What has caused all these people to ask online if ME is fake? What makes us different from the other countries? Do we have more people here questioning the reliability of the disease? Do the searches reflect media coverage and reporting on the issue? Are they a consequence of a lack of adequate information and weak resistance to disinformation? Or is it the case that the statistics reflect patients' encounters with healthcare? Is it the doctors who are googling? Or do we have more people with a potential diagnosis in the wake of COVID-19 than other countries?
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(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.)
 
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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.
 
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Midnattsol said:
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.
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Now in English translation:
Fraudulent research on vulnerable patients

quote:https://melivet.com/2023/05/26/fraudulent-research-on-vulnerable-patients/
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?
 
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:
https://www.facebook.com/brageeklin...gxy4WNAuYn9wMzAq5QM1n9trvcD8Y4bzn4h25kkpsYXQl
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Auto-translate said:
We have understood that a lot - often not correct information - has appeared on social media about B12 treatment in ME/CFS, and we want to say that the doctors at the clinic agree to continue the treatment for patients who have had good benefit, and to also offer education and support at our clinic. We have no reason to reconsider the treatment for these patients, but want to individually continue to assess the relevance, inform about the advantages and possible disadvantages.

All treatment is individually decided and we would also like to tell you that we will prepare a larger study on the effect of the drug, and announce more via our newsletter when this is realised.
www.bragee.se/nyhetsbrevet
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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.
Bragée Kliniker auto-translate said:
There had been new reports that we absolutely have to evaluate before prescribing, now this work is done. I think it is great that we have such an approach to patient safety, and that patients know that we do not take any prescription lightly. This work has now been finalised in a conference this morning.
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(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.)
 
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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:
Twitter discussion said:
Two nice replies on twitter in Norwegian





One in English

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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
Auto-translate said:
Sweden must invest in specialised care for post-infectious conditions

Sweden cannot - just after a pandemic - be in a situation where care for post-infectious conditions is closed down instead of being built up, write representatives of the Swedish Covid Association, the National Association of ME Patients and the Association for Difficult-to-Diagnose Infectious Diseases.
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ME/CFS–utmaningar och möjligheter i Primärvården
https://www.akademisktprimarvardsce...utmaningar-och-mojligheter-i-primarvarden222/
Auto-translate said:
ME/CFS challenges and opportunities in primary care

2023-08-30, 13 - 16.30
Digitally via Teams

ME/CFS is a complex diagnosis with great impact on function and activity. At this training session, you will gain knowledge about the diagnosis based on the current state of evidence and take part in the clinical experience from the former ME/CFS reception at Stora Sköndal and the Brageé Clinic's ME reception.

Course date and time
August 30 at 13-16:30
Sign up no later than August 18

Contents
Investigation, differential diagnostics, treatment and follow-up in primary care and primary care rehab.

Lecturer
Kent Nilsson, Specialist in general medicine, formerly Brageé ME center

Anna Lindquist, Specialist in general medicine/operations manager Salem and Tumba Vårdcentral.

Ewa Wadhagen Wedlund, Occupational therapist, Postcovid clinic Huddinge Hospital, Karolinska Institute, and former ME/CFS clinic Stora Sköndal.

Jeannette Sass, physiotherapist, Brageé ME center.

Target group
All health care employees in Region Stockholm.

Costs
Free of charge for health care employees in Region Stockholm.
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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/
 
mango said:
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/
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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.
 
Kalliope said:
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.
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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.

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