News from Scandinavia

The fact that Larun's replies were so dire is an important part of the problem!

 

Well, when one is certain of that the horrible ME activist are the root of all evil, Laruns words are only just.

 

Wait, did Larun attend? From the progam she wasn't a speaker, I think?

 

No. What we are talking about now, is the discussions in KGs FB page about Reuter.

 

Ah...! Never mind me

 

The Swedish public service television company with a news segment about ME patient Sture. He was rejected social security, but after a long battle finally won.
Not able to provide google translation, but it is a sympathetic article.

SVT: Kroniskt trötte Sture får rätt i Förvaltningsrätten efter lång kamp

 

There are others better equipped to comment on the situation in Sweden - but this seemes to perhaps be an important judgement? maybe setting precedence for ME-patients....? or is taking it to court just "standard protocol"? :/

 

There have been so many similar judgements over the years, also in the higher courts, but sadly they don't seem to make a difference It wouldn't surprise me at all if Sture will have to go to court again, for the next period of time (after Jan 31, 2018), and the next, and the next...

It's immensely exhausting, frustrating and demoralising if your doctor only writes the papers for 3 months at a time, as many do... sometimes having to appeal each and every one separately

 

Oh, I'm so sorry, that's terrible for all sick people, so, so hard for people with ME

 

Thanks. Yes... I had to keep fighting in courts for more than 9 years, so I know from experience how horrendous it can be It almost killed me. It's a massive problem here in Sweden, not only for PWME (but perhaps more for us than most others?).

 

There's an article in Dagens Medicin (Sweden) today, about the Cochrane issue it seems, but it's paywalled. (They suddenly started paywalling yesterday,... including some articles that were previously free to read.) Anyone here have access?

https://www.dagensmedicin.se/artiklar/2018/10/25/indragen-me-oversikt-ses-som-lugnet-fore-stormen/

 

You can subscribe for free for one month to the online version (I just did)

This is an article about the Cochrane withdrawal with an interview of ME doctor Björn Bragée. He is not surprised that the review gets withdrawn.

He says this patient cooperative is not like any patient cooperative that quietly observes research and such. These people are very well read and knowledgable. And they mobilise, rightly so, together with the researchers that have other views.

He says this is sensational, but has happened before and mentions that the Lancet withdrew an article about ME and CBT, the so-called PACE trial ( )

He says the professionalism he meets on a daily basis from his patients has made him humble. He says those days are over when research could be done without the patients having any opinions and that this is the first patient group that shows this.

This will eventually happen within all fields. This is just a ripple on the water until the tsunami arrives. He criticises the attitude from colleagues that patients shouldn't interfere with science. If you publish something, you have to accept being asked questions.

 

maybe post this in the cochrane-thread as well?

 

@Kalliope Thank you so much!

Dr Bragée is a very controversial character, used to be a tv celebrity, he's new to ME/CFS, likes to promote bps while at the same time claiming that his approach to ME is biomed, and it seems to me like he's still not up to speed knowledgewise -- particularly when it comes to the history and politics of ME. He's a loose cannon in my opinion...

Shame he couldn't get the facts about PACE straight

 

In Memoriam: Arvid Carlsson—Pioneering Researcher and Nobel Laureate
"was instrumental in developing biological psychiatry in Denmark"

"as late as 30 June 2018, the day after he died, a paper was published in Acta Neuropsychiatrica on which he was the senior author: “A randomised controlled trial of the monoaminergic stabiliser (-)-OSU6162 in treatment of myalgic encephalomyelitis/chronic fatigue syndrome”."

https://www.nature.com/articles/s41386-018-0244-0

https://www.ncbi.nlm.nih.gov/pubmed/29212562
(didn't work)

 

Perhaps someone might pleasantly let him know.

 

From the Cochrane thread, I think someone already did? Or at least the article was corrected

https://www.s4me.info/threads/cochr...emporarily-withdrawn.6225/page-26#post-115526

 

The editor made the correction when he spotted the error. I don't know if they have informed Bragée about it.

 

Stora Sköndal ME/CFS Center in Stockholm, Sweden:

http://www.storaskondal.se/vara-verksamheter/neurologisk_rehabilitering/mecfs-mottagning/

https://twitter.com/user/status/1057317913923850243

 

Paywalled article in Aftonbladet, Sweden:

https://www.aftonbladet.se/halsa/a/Kv4jVy/kroniska-sjukdomen-som-inte-gar-att-vila-bort/promo