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Responding to a deleted post. I have the same experience, and in addition to being a patient and a junior scientist, one of my degrees also make me a clinician. It still doesn't matter.

Another problematic part of how this guideline is supposed to work, is that for "other conditions" with fatigue, treating the fatigue will be included in that condition's own guideline. Whereas for us, we will be part of a "fatigue" guideline. This cements the view of Wyller and co that fatigue...

Supplements wouldn't matter all that much. Levels in the blood of these nutrients doesn't tell us what is inside the cells. And with calcium especially, it is under tight regulation inside a narrow range and intake, be it from supplements or food/beverages, doesn't change that except in extreme...

And it keeps going into adulthood, when you get asked about your teens/young adulthood but have an experience so vastly different from many others.

It should be embarrasing, but obviously they don't see it that way. That list is laughable (and so was the rest of the presentation..)

I have access to the paper, send me a pm if you want it :)

Khrono, the newspaper that has had numerous articles about how concerns from pwME about the Lightning Process study at NTNU and conflicts of interests (amongst other things) show how pwME doesn't understand science, now has an article about an Australian behavior researcher who researches her...

If that was the case they could have gathered new studies outside of the highest hospitalization rates as a sort of control. Without them saying why it's easy to find reasons. One of mine took nine months to even find a set of peer reviewers (but then we also got three instead of the two the...

I'll add that PANS/PANDAS can be misdiagnosed as autism, so you have people developing symptoms after a viral trigger. And a concern I've heard following lack of concentration/impulse control after covid-19 infection is an increase in scoring above the threshold to be given an ADHD diagnosis...

I'm mild, currently working full-time and have a family to care for. Taking part of a study doesn't easily fit into my energy budget. I'm not saying that it fits into the energy budget of the more severe patients either, but that the decision making tree could look different for all of us. For...

In post #36 in this thread I've written they have a "both sides" approach. I seem to recall my view at the time was based on their opinion piece in VG early in in the project "Me debatt i loop".

Eight members of this group met with the Norwegian Directorate of Health to talk about ME in february, as found out by and FOI request by a Norwegian patient advocate, more can be read here (in Norwegian). I'm just translating what Sissel shared as the main points of their presentation, I...

If anyone wants to discuss what is reported by Sissel in the link above, we have relevant threads on the development of new guidelines, on the FaFo/SINTEF research team behind Tjenesten og MEg and on the Oslo Fatigue Consortium. The two groups have attended a meeting at the Norwegian Directory...

The group has been part of a meeting at the directory of health on the new guideline developments in Norway, and quote: "We have never before seen a patient group being this ignored" Source (In Norwegian)

The guideline doesn't really recommend GET or CBT, it says it might be helpful for fatigue but doesn't seem to do much for working ability. But somehow this is ignored by mostly everyone interacting with patients telling them to do GET/CBT.

They have invited themselves previously and I think asked to be kept in the loop even if they at that point got turned down, so I don't think it's difficult to see how they got an invite and someone else not. The team at Haukeland is, as far as I know, not talking about treatments and "helping...

Jeg syns også det er selvforklarende. Our language story is actually pretty interesting with lots of twists and turns. There was work to differentiate Norwegian from Danish, but it never really took of and only really left us with two official written languages "bokmål" and "nynorsk" ("new...

Takk for konstruktive tilbakemeldinger @Utsikt! I andre norske tekster pleier jeg å skrive at forkortelsen "PEM" ofte også brukes på norsk, så enig det burde inn her. Jeg har ikke noen sterke følelser for ordlyd, så for min del kan endringene du foreslår tas inn. Eller, jeg foretrekker...

Thanks for noticing! What seems to have happened is that a part got lost when the translator copied it to Word before starting his translation, and when he read it over he thought the meaning was covered in one of the bullet points. We’ll get it fixed :) Thanks for the nice comment @Kalliope!

I’ve removed the quotes :thumbup: