Knowledge center on ME at Akureyri, Iceland

[Kalliope]

Spotted this via Invest in ME on Facebook. Yesterday it was announced that the Hospital in Akureyri, in cooperation with the Norwegian Health Authority will establish a knowledge center on ME.

Akureyri was part of a large outbreak of ME/CFS in the 1940's. (For a time ME/CFS was called the Icelandic disease, according to ME-pedia).

I don't know how helpful the Norwegian Health Authority is going to be in this, as the knowledge center in Norway has been an utter disaster. But hopefully Iceland will go for a more updated approach. (ETA: This was a misunderstanding. See next post).

Announcement from the Icelandic government
google translation: A knowledge and advice center on the ME disease will be established

quote:
The planned establishment of a knowledge and consultation center about the ME disease has been given the working name of the Akureyri Clinic. Part of her foundation is to improve the understanding of ME and related diseases and to promote better service to patients. Among other things, the aim is to ensure that GPs can go there with cases that require confirmation of a diagnosis and that patients can receive advice. The clinic would thus be the coordinating body for services to ME patients nationwide, in addition to working on registering the disease and promoting research.

 

[Kalliope]

oh, good news! according to a post in a Facebook group it's likely that Google translate did a mistake and confused Northern Icelandic health authorities for the Norwegian Health Authority, so Norway has no part in the development of this knowledge center

 

[bobbler]

I seem to remember watching a programme about iceland's genetic databases and them being a frontrunner for this area. I just wish I could remember the specifics - it was at the time of covid, but I can't even be sure whether the programme specifically related to that at any point.

Anyway, so it would seem a strange move to partner with Norway and some of the less biomedical areas there when as a country it has been making headway in a number of conditions from the genetics angle.

https://en.wikipedia.org/wiki/DeCODE_genetics

 

[Ravn]

Sounds like good news for Icelandic pwME.

Even if Google seems to be struggling with the Icelandic language. Besides confusing Norway with "North Land", i.e. the Northern province of Iceland, Google also turned what should have read "Akureyri disease and Covid-19" into "Ear infections and Covid-19"

If only Akureyri disease [=ME] was just an ear infection!

 

[Kalliope]

Sounds like good news for Icelandic pwME.

Even if Google seems to be struggling with the Icelandic language. Besides confusing Norway with "North Land", i.e. the Northern province of Iceland, Google also turned what should have read "Akureyri disease and Covid-19" into "Ear infections and Covid-19"

If only Akureyri disease [=ME] was just an ear infection!

oh, I did not spot that. Yes, if only!

 

[Kalliope]

I seem to remember watching a programme about iceland's genetic databases and them being a frontrunner for this area. I just wish I could remember the specifics - it was at the time of covid, but I can't even be sure whether the programme specifically related to that at any point.

Anyway, so it would seem a strange move to partner with Norway and some of the less biomedical areas there when as a country it has been making headway in a number of conditions from the genetics angle.

https://en.wikipedia.org/wiki/DeCODE_genetics

I heard about that. I think it was both that they are progressive in genetic research and also is such a small country that it's possible for them to have mapped the entire population?

Agree it sounded strange to partner with Norway, but I was afraid someone had been "inspired" by our knowledge center. Very happy this was a misunderstanding.

 

[Wyva]

I've made some calculations as Iceland seems to have a population of 380-390 000 people (yes, that's a lot less than the population of most European capitals).

If we take the 0.5% prevalence of ME/CFS as fact, then they have around 2000 sufferers. So it is pretty good that they are setting up such a centre for them (while countries with a much higher number of pwME have no such thing).