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A sympathetic piece - "Afflicted left me questioning a few things but not the people from the show." Includes added info from Bekahs brother that were left out, about why she didn't do the free treatment offered. Actual medical advice didn't go with the story of "wanting to be sick"...

In Norway, these kind of programs in a rehabilitation centre is pretty well known not to be actual treatment, but more of a course in managing the illness and an oportunity to meet other patients. In many ways sort of like a retreat, a chance to get away from your everyday life, getting all...

They do _not_ get to blame patients.....!! If he now wants to play the "ME and CFS are different"-card, then they activily lied to patients to get them to participate in the PACE-trial. Either way, it doesn't end up looking good. and...

This bit, of all the things surronding these group of studies, is where I really lost hope in the establishments. It's right there, in the study - or really service evalutation - they went to schools and interviewed parents/children _not attending the clinic_ /flabbergasted "Remarkably, in its...

"So why are ME/CFS patients constantly accused of being anti-science and irrational and “vexatious” for not accepting findings produced by this kind of data-torturing? When it comes to this domain of research, it is clear to non-biased observers that it is the researchers themselves who are best...

Also how different cultures prioritise work vs free time. In Norway the general attitude (doctors and "the disability office" have told me this also) is that before you should think about trying some % work - you shold first be able to do the same daily living activities as a healthy person...

At 50 % and 25 % it can make sense, but then it gets weird? At 6 % you could go up to 1000 steps? And then at 3 % you're completly bedbound? Cutting step counts in half, doesn't make sense the more severe you get. It doesn't take in account that energy for basic bodily functions is constant...

"....it is with some relife that I learned you weren't a co-author." :rofl::rofl::rofl:

Ehm... You, Sir, were paid to _produce_ this trash - so....?

It took a bit digging around to find out - someone asked the author in the end, to make sure. The paper was mainly based on personal blogs (so, personal opinions and stories), and a couple of public facebook pages (sharing news, research etc) - not something you would normally call "fora" - for...

It was a blog written by an underaged person, and not made anonymous enough in the paper so it got recogniced. That researcher used the word "fora" about personal blogs, so lots of confusion and rumours about beeing a member of facebook groups or forums, but they used public sources. There...

"Children trusted ... doctors ..."

"The same crap as always." <3

I actually think part of why the debate is so polarized in Norway is the focus many patients advocates have had on diagnostic criteria - we haven't been able to get an actual discussion on the science and methodes used in this studies, which could "prove" anything. Instead we have an polarized...

This. In Norway he is critized for using too lax inclusion criteria in his studies, as he is not using any established criteria, and therfore not really studying ME/CFS. I'm reading this as another paper from him trying to argue that his approach is the correct one: "A broad case definition of...

ah - thanks, and agreed :thumbup: (google just wasn't helpful for me today :asleep: :confused: )

Sorry, I've got no idea what this means? :)

Avindra Nath: https://www.medpagetoday.com/neurology/generalneurology/71257

This enitre post by Leonard Jason, reflecting on how input from the patient community has guided his work over decades, and made it better - ending with: