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Note - I'm not sure the number for government funds is correct. And yes, the ME association is open for family members and others supporting the cause, but they will have to be registered as such. Not sure if the government support is differentiatet for types of members. But they will know how...

I'm not absolutly sure about this - but I don't think that money can be spent on research. It's ment to help with general administration and activities for members, at least that's my understanding. The ME association have a seperate enity that do fundraising for research.

Yes, this is the same for (almost) all voluntary/nonprofit organisations. There is also possible to apply for extra funds based on the organisations activity level - at least organisations aimed at children/youth (not familiar with for adults). Activities in the form of a course/classes...

Yes, Wyller have been one of the strong proponents of CBT, GET and also to some degree LP. What I also note, is this time he had to refer to NHS, think that's new. It used to be 'PACE, the largest ME-study' and 'Cochrane, gold-standard evidence' or something similar. It seems like not even...

It's a translation of the forskning.no (norwegian online science magazine) article @Kalliope posted earlier in this now merged thread. We love professor Sommerfelt, he does what he can to improve childrens situation here, including voicing his opinion in interviews. It used to be mostly only...

Thread reminded me of this study, a few years back, from the University in Tromsø (northern Norway). They found that over the last 30 years or so, the 'treatment effect' of CBT in studies have halfed. In journal for norwegian psychologist - Therapeutic effect decreases (norsk) Note - CAT = CBT...

I'm pretty sure the documents should still be listed, with a reference to the law used to keep parts from the public. It would be the personal information itself, not the document that could be withheld from the public. At least that's my understanding, with a bit wobbly ME-brain... :noteworthy...

Thank you @Marit @memhj ! That must have taken a huge effort to put together :thumbup: So useful to have the timeline, documents and references in the public domain. It's mainly Laruns emails/documents missing, if I'm not mistaken...?

They are for different cohorts within the spectrum av 'severe' - often we talk about severe as beeing one and the same thing, but it's really a spectrum on it's own. The report uses: severe-moderate severe very severe extremly severe Even if the differences in procent on functionality scales...

The report made it to a mainstream online newspaper, not the most read unfortunately, but still. Article seems very factual, cites much from the report. Good comments by Schei and Myklebust from the ME association. "New report on ME: Among the sickest in Norway and do not get enough medical...

Actually, my impression is that making these reports - the ME association have done others as well - really have been one of the most impactfull things the association have done. Even here in our rather hostile debate-climate. Some still do try and underscore the importance of them, yes. But...

I may very well be wrong, but my gut feeling is still that these days, if you like to study 'anything human behaviour' - just angle it towards CFS (and I'm intentionally not using ME) - and you'll get both funding and publication. Or maybe just the more generally known ME gets, we will also...

Oh, the wording of these things - clearly showing their own bias... What they found was actually: Demonstrating that it's normal even for healthy people that mental fatigue in itself can alter your cognitions. If they could just for a second concider it's not 'attention to', but 'inability...

Oh, you missed out, it was absurd! Here :) https://www.qmul.ac.uk/wolfson/media/wolfson/current-projects/GET-guide-booklet-version-1-22062010.pdf Lots of the QMUL-links got broken in a site-update....? Not sure, but it's still online. Also, check out the parody account on twitter for GETSET...

Addition - the one little thing that gives me a tiny bit of hope, is the mere fact that this process actually have taken this long. The chief editor have obviously not just given in to the review team/Norwegian institute of public health (again - sorry about that :( ). If so, the review would...

Who are 'they'? The Cochrane central editors, or the norwegian-based review team? I don't think we can make any assumptions about what the new Cochrane editor's take on this is yet, even if I don't have my hopes up for a good outcome... I strongly suspect that what is happening behind the...

Oh, I agree, that's how I percive much of the MUS arguments/way of thinking/treating. But - why then do a study to check if your assumptions are right...? Either Crawley isn't very populare now in the MUS-community proving herself/MUS-theory wrong, or, they actually were so confident in their...

I think that is the difference in when patients talk about crashing, as a once in a while thing, and these researchers talking about 'boom-bust' Remember GETSET Julie? https://spoonseeker.com/2017/07/03/spotlight-on-getset-julie/ She just needed to reschedule her week, sleep less and do...

Hope - for the reader - and the feeling "we can do something to help this person". It's a better story. Illness stories with the person just continuing to be very ill, and no hope of treatment, isn't something most people like to read. Hence we've got tons of LP-stories here, and it's very...