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This trial is from 2008, but paper was made available online 2 january 2018. This is the trial that Stubhaug references as the "4 day mindfullness treatment" beeing based on...

Also, isn't this rather meaningless - when there is no mentioning of either severity of illness, or how long they've been sick? In an illness where illness severity is varying so much, and no-one has assesed the long time impact. Since the norwegian 4 day mindfullness study, I'm beginning to...

The danes are keeping up the pressure :thumbup: Article about ME, Cochrane and health recommendations (they're not giving in quite yet) - google english - danish

This might be useful for a new thread? I'm sure many are not aware. I may mis-remember, but belive I've seen some workshop with patients advocates as well

But if you can't really seperate the cases clinically, even the best doctors can't be completely certain who has what. Even if misdiagnosis also is an issue. I've personally been on the very severe spectrum - but now more moderate/severe. It does happen, even if it is seldom. Another thing...

You expressed it more elequently then me :) There can't be a 'one size fits all' for advocazy, the situation, needs and current clima is very different in US, Denmark, UK and Norway - the ones I know best. The needs and possible strategies in countries where the diagnosis is hardly known at...

I'm not sure it's that easy. There have been severe LP-patients diagnosed by doctors I would call ME-experts here, that still have had LP-recovery stories in the press. Many people are severe/very severe and recover some or even totally, by themselfs - withput any treatment. It's part of human...

I'm sorry, but I don't know if this is helpful - as much as I love many of the things ME action does. At least here, a post like this will read as just underlining the points our LP/biopsychosocial brigade make about ME-patients online activisme. Even the word 'activisme' is used in a hostile...

I want that tattooed somewhere - or maybe on a tea mug :p

And I'm not sure if this is in the thread already, but I belive it's one of the news stories leading up to the 'folketing' discussion. He is the father of a severe ME-patient, and it made an impact on the politicians, and how they where denied even basic help as a bath stool, that don't cost...

There is not much information here - but it's the page for the case at 'Folketinget' (=parliament?), and the announcements of dates...

Yes, in Norway, the centers for rehabilitation, where you go for 2-3-4 weeks/months to rehabilitate after surgery, stroke, learning to manage severe adult asthma etc, are private - with contracts with the health regions. (but rehabilitation can also be within the hospital, or local authorities -...

Vogt tweeted the study at Sharpe - no feedback as I can see. Had been wondering what that lot would be making of this 'study', as Stubbhaug is sort of bragging about getting waaay better results/better theraphist - would love to see their analysis :woot:

A very good reply today in Bergens Tidende, by Trude Schei, Assistant Secretary general and Olav Osland, Secretary general of the Norwegian ME-Association. It's toned down and polite, setting the petition into contexts - the national competence service is currently beeing formally evaluated...

I'm not a fruit fly :-P but find this article interessting, and wonder if there is a human version. When I was at my worst, I had hypersomnia, hardly "awake" at all. For me, whatever my ME is, clearly affects my sleep-wake cycles...

That was the counter argument from the "biopsychososcial" crowd here, when patients started using the two year follow-up study on pace null finding for arguing the treatment was not working - "clearly that shows patients are so delutional they need continues treatment", didn't even make a dent...

Link still active, but now says: "This article is deleted". https://www.dagbladet.no/kultur/denne-artikkelen-er-slettet/70698445 Edit: Was refering to the content itself, now see even the url have "this-article-is-deleted". Both the headline and content is also gone, replaced with only that...

Oh, duh :rofl: even more fogged up than I thought, not even realizing what language I'm reading :p

Thank yoy for lookin into this :) Wow, if that turns out the be true...

Just leaving this useful blogpost (thank's @Brian Hughes ) here, about the reuters cochrane piece - but applied to this situation, will show a pattern of taking to media, attacking insted of defending the science? https://notthesciencebit.net/2018/11/03/the-triumph-of-eminence-based-medicine/...