News from Scandinavia

https://magnetevent.se//Event/utmattningssyndrom-och-mecfs---vad-ar-skillnaden--19605/#21286

Edit: Maybe you´d like to write a summary in English? I have too much of brainfog today.

 

Thank you, @Helen
I had heard about this seminar before, but thought Alvtegen talked about another (and more exciting) one.

The seminar will be at 8th May and about the differences between chronic fatigue and ME. Per Julin from the national ME-ward Stora Sköndal will be attending, as will prof emeritus Jonas Blomberg, both very knowledgable on ME. The other speakers are new names for me, but seems to will be talking about general fatigue and stress.

The organiser of the seminar is the Journal for the Swedish Medical Association

 

This article in Fagersta-Posten is behind a paywall, so I haven't read it. I'm not a fan of the headline...

Tina blev kroniskt sjuk efter influensaspruta: ”Jag är inbillningsfrisk”
https://www.fagersta-posten.se/logg...efter-influensaspruta-jag-ar-inbillningsfrisk

I'm not sure how to translate that... Tina became chronically ill after flu shot: "I'm pretend-healthy"? The way I read it, it suggests that she's suffering from "inverted false illness beliefs". I guess it's a joke, but still...

 

Well I get it, but I'm not sure I'd try telling it in the wrong company.

 

On one of the phone-in radio programs someone ('mild' ME sufferer) said
'I don't pretend to be ill, I pretend to be healthy', as she had kept her illness a secret. I'm guessing it's something along those lines.

 

That is how I interpreted it too. Let's hope you are right @Sly Saint and that this is another informative ME-article in Swedish media.

 

"ME-foreningen Gjestebloggen: Nå er det f**n meg på tide at de våkner og tar sykdommen på alvor."
http://www.me-foreningen.info/2018/...-tide-at-de-vakner-og-tar-sykdommen-pa-alvor/

Google Translate, English ("Norwegian ME Association, Guest Blog: It's about damn time they wake up and take the disease seriously.")
https://translate.google.se/transla...-vakner-og-tar-sykdommen-pa-alvor/&edit-text=

 

Front news on The Norwegian Broadcasting Corporation (NRK)

30 år gammel vaksineforsøk ender med massesøksmål mot staten

google translation: 30 year old vaccine trial ends with mass action against the state

It is about 150 participants of a trial back in the 1980's on vaccine against meningitis who say they got long term health problems after having received the vaccine in their teens. One of the front figures is ME-patient Lene Loe.

 

An article in Sweden today, based on the UK articles about Merryn Croft (s4me thread here)

Expressen: Mamman vill att alla ska se bilderna på dottern
https://www.expressen.se/omtalat/mamman-vill-att-alla-ska-se-bilderna-pa-sin-doende-dotter-/

Google Translate, English ("The mother wants everyone to see the pictures on her dying daughter")
https://translate.google.se/transla...se-bilderna-pa-sin-doende-dotter-/&edit-text=

 

A Swedish radio programme about science tells that there is no evidence for CBT or GET in CFS according to new findings after the earlier PACE trial. The programme is considered serious , so happy to hear about the statement in that programme.

http://sverigesradio.se/sida/artikel.aspx?programid=406&artikel=6927185

Edit: Also a short note in the newspaper Aftonbladet
https://www.aftonbladet.se/nyheter/a/9mMrRl/kronisk-trotthet-inte-battre-av-traning

 

Swedish doctor Per Julin from the ME-ward at Stora Sköndal interviewed by Vetenskapsradion (The Science Radio) about the re-analysis of the PACE-trial.
Says that it shows CBT and GET are not good treatments for ME, and that ME-patients rather need to pace themselves.
Language: Swedish
Duration: 1.54 minutes

KBT och träning vid kroniskt trötthetssyndrom saknar evidens

There is also an article. Here is the google translation.
CBT and exercise in chronic fatigue syndrome lack evidence

@Tom Kindlon - you might want to see this.

ETA: Sorry @Helen You had already posted this. I didn't see that until now..

 

Google translation:


Chronic fatigue syndrome does not get better by exercise and therapy, according to a new study. Stock Photography.
NEWS today 08:05

It is not certain that CBS [=CBT] and physical exercise improve health for people with ME / CFS, also called chronic fatigue syndrome. A new study questions previous results, reports the Science Radio.

Characteristic of the disease is that you get exhausted, even from everyday things. Common symptoms include fatigue that does not go over, aches in the body, fever and fever.

According to a study from 2011, CTA [=CBT] conversation and training could improve the health of the victims. Around 60 percent of the participants had become better. However, when the material was reviewed again, the figure was 20 percent.

Per Juhlin, specialist in rehabilitation medicine, says to the Science Radio that patients often need to save on the forces instead.

- There are few studies based on the more modern ME / CFS criteria. What is clear is that you can not exercise well. There is no medicine or exercise that can cure. For most patients, the symptoms tend to break off for a long time.

 

Aftonbladet: Kronisk trötthet inte bättre av träning
https://www.aftonbladet.se/nyheter/a/9mMrRl/kronisk-trotthet-inte-battre-av-traning

Google Translate, English ("Chronic Fatigue not improved by exercise")
https://translate.google.se/translate?sl=sv&tl=en&js=y&prev=_t&hl=sv&ie=UTF-8&u=https://www.aftonbladet.se/nyheter/a/9mMrRl/kronisk-trotthet-inte-battre-av-traning&edit-text=

ETA: Sorry, crossposted with Tom Kindlon.

ETA: The same text is now published in BT as well:

Borås Tidning: Kronisk trötthet inte bättre av träning
http://www.bt.se/tt-inrikes/kronisk-trotthet-inte-battre-av-traning/

Google Translate, English

 

good translation!

 

https://twitter.com/user/status/983561639806029824

 

Oh boi. Just looked at the first draft for the Danish funktionelle lidelser, which covers ME/CFS. They are worse than I had ever imagined.

https://l.facebook.com/l.php?u=https://lookaside.fbsbx.com/file/Opsummering%20af%20Sundhedsstyrelsens%20udkast%20til%20anbefalinger%20for%20funktionelle%20lidelser.pdf?token=AWy_ANj3Yz0SA8P0LaeHRLxVum06EJKrXaATM_g-zPMZhggrb8XZdF_QeoprhmlOC-n-vaq2E44L_DXX2jDd8RbzOBeLDaqskhPyGJaRHoCMqgVkUzFq3iz1iKlbSXGaVeERp8MCiR5x8A7shIPY5v9a-VH9Iv0DL4YJqxPvx0lMdruTRxEU0Q4vkGBioHpKWuc-X_O1RoWJz3puXrde5Xeb&h=ATPLTQmQGglKOyDYs0iS8r1ifkKjT0fV5iZXPiiEtrdigF_eBJM8ELpfAa5BRDC_QTsCliTbM38zFkHvjPkqkIV_GJEqVKBDpIX-Ba_QwKOf47tbgD41tnUkSYC9peKqONJ9

Basically the Danish 'Sundhedsstyrelse' has doubled down on it's fight against ME/CFS in the favour of the 'funktionelle lidelser'

 

Uppgång: Inget botemedel finns för Jenny
http://www.uppgang.com/nyheter/enkoping/inget-botemedel-finns-for-jenny-4946920.aspx

Google Translate, English ("There is no cure for Jenny")
https://translate.google.se/transla...medel-finns-for-jenny-4946920.aspx&edit-text=

 

This week, every day for two hours, the TV programme "Malou after 10" on channel 4 will discuss ticks and tick-borne diseases. The first programme today was very good. Unfortunately it can only be watched in Sweden.

https://www.tv4play.se/program/malou-efter-tio/3939310

 

Läkartidningen: "Debatt: Släpp in funktionella neurologiska tillstånd i neurologins finrum" by Carl Sjöström and Anders Lundin.
http://www.lakartidningen.se/Opinio...-neurologiska-tillstand-i-neurologins-finrum/

Google Translate, English
Journal of the Swedish Medical Association "Opinion: Let functional neurological disorders enter neurology's posh venues"
https://translate.google.se/translate?sl=sv&tl=en&js=y&prev=_t&hl=sv&ie=UTF-8&u=http://www.lakartidningen.se/Opinion/Debatt/2018/01/Slapp-in-funktionella-neurologiska-tillstand-i-neurologins-finrum/&edit-text=

Lundin is one of the most notorious BPS extremists in Sweden.

 

SVT.se: "Inte klarlagt att kroniskt trötthetssyndrom är en fysisk sjukdom"
https://www.svt.se/opinion/article17674467.svt

"Not determined that ME/CFS is a physical disease" (Google Translate not available)

Reimer is one of the most notorious BPS extremists in Sweden.