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1.5 hour left for todays conference to start! :) Also - it seems like yesterdays conference is now available via the top link (it wasn't last night).

Oh... I think I've actually seen some of those, pretty much training in how to gaslight your patients....? :mad: didn't note the name or make the connection to Wessley though, gaargh! But - no more! This is a happy day! :balloons:

Ah.. I see. Thank you @Andy and @Keela Too as well - sometimes it feels like we need a Game of Thrones style map/viewers guide of all involved and their role in the plot....

Takk! made me smile :)

She's a new name for me, but I understand from your comment that she is married to Wessley? Or am I misunderstanding...? :)

FINALLY!! I'm not even bothered about the expected pouting - this is really happening!! :party: And amongst the pouting, this very quotable statement from Tovey: “This not about patient pressure,” and: “We are in discussion with the review author team about this review following a formal...

Replying to myself to add that, Vogt also has a history of focusing on those who got well and LP, predating the stricter marketing restrictions on alternative treatments. This quote for instance, is from his blog august 2016: https://henrikvogt.com/2016/08/31/cfsme-listen-to-those-who-got-well/

I think he's mostly angry about the insinuations that RN was established as a way to get around the stricter marketing restrictions of alternative treatments - july 2017. And I think he might be right. The new marketing restrictions might just be an unlucky (for him) coincidence. If he really...

What an absurd conclusion....? Surley the risk for early death are linked to, you know - beeing sick??? So, actually beeing sick have more of an impact on your health than smoking, who would have known......? :emoji_face_palm:

Translation from 'buisness speak': We fucked up and we know it. Trying to correct our mess now, but no way we're going to admit to anything. And there really shouldn't be a strategy behind a porfolio assesment - by Cochrane - it should be about evidence and established knowledge.

That's not what's happening here - she _does_ know. She has been ill with ME herself and have visited several severe patients by their bedside. I started writing a post about the norwegian ME-debate on another thread, but maybe it might be better as it's own thred. It's all about rhetorics...

? Self reported measures for symptoms. So why conclude parients got better in spite of biological markers got worse...? Wouldn't a more valid conclusion be that self reported measures in open trials where treatment is based on patients tackling their illness - can't be trusted....?

Don't really want to 'like' that, but thank you for informing us @Kalliope . Maybe this they might just end up amplifying the critic, underlining who the only supporters that benefit frim the competance service is....?

Not read the whole thing yet, but these bits makes me looking foreward to do so :) (line breaks inserted by me)

It's only a list of possible relevant papers - studies and systematic reviews. The result of a systematic litterature search, nothing more. And that doesn't include actually reading the papers either, selection is based on title and abstract only: (google translate: ) Not really sure how...

That's how it was for me, since I went many years undiagnosed. My body was stronger, more fit - but I was in constant PEM and very, very sick and in many ways able to do much less than now.

Ah, that may be. Don't have the brains to read up on the detailes of selection :/ at least they are not included

There is a list of ongoing studies, the Crawley NHS-FITNET study is not on it, or on the list of excluded trials. Not sure why? Maybe it started after the search for studies was done.....? https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD012489.pub2/references#CD012489-bbs1-0004

The FITNET-trial, Nijhof, Bleijenberg et al. is on the list of trials excluded from the review. :thumbup: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD012489.pub2/references#CD012489-bbs1-0002

But I would like to add, I find the rationale of why trying out this groups sessions very wrong. It shouldn't be about saving money - but the potentional for added benefit for the patients.