Norwegian guidelines in development: help with a literature search

[Utsikt]

The draft was supposed to be presented the 21., but has been delayed until further notice.

Where have we seen that before..?

I hope they give a prompt and public response where they explain why. I also hope that any adjustments made in this period will be documented.

 

[Midnattsol]

Something I hadn't seen is that patient organisations have shared the name of the new guideline, and apparently "CFS/ME" has been changed to "ME/CFS" if we can go by the name used in their blog posts

Edit to clarify: When I say "shared" I don't mean they have shared "this is the new name of the guideline", but that in blogposts their quoted name of the guideline uses ME/CFS.

 

[Kalliope]

The draft of the new guidelines were supposed to be published last week for public review, but got postponed. Today the Norwegian ME Association shared the following message on Facebook (auto translated):

Regarding the postponement of the publication of the consultation draft for new guidelines: The Norwegian Directorate of Health has informed us that the postponement is due to some members of the advisory group dissenting. They hope to be able to send out the document, along with the reasons for dissent, within the next week.

At present, we do not know who or how many have dissented, or what the reasons are.
As mentioned, this information will come next week as planned.

 

[Utsikt]

The Norwegian Directorate of Health has informed us that the postponement is due to some members of the advisory group dissenting.

Unless the ME/CFS and LC associations have completely blindsided the patients and not told anyone that they are dissenting, the only other option is that it’s the BPS folks. That would be good news.

Edit: if they don’t know how it is, it can’t be the ME association.

They hope to be able to send out the document, along with the reasons for dissent, within the next week.

This info should have been communicated alongside the notice of delay.

 

[bicentennial]

Although its only at the draft stage, it was ready to publish. So this dissent seems to have bided its time, then signalled its dissent only at the last minute, in a cliff-hanger, when all else failed - or to exert more leverage. I doubt it just happened.

Whichever side of the divide dissented, I suspect incompatibility since psycho-social theory insists that ME/CFS is a manifestation of the mind, failed to gather clinical evidence for its unaccountable, highly subsidised method, and resorted to coercion.
.
Or else all sides dissented with some inevitably frustrated, unrealistic compromise.

In the past, at a final stage, this kind of cliff-hanger signalled a highly organised, highly publicised and persistent rebellion in the ranks of public service, unwilling to apply differential diagnosis in:

- adult and child protection aka (safeguarding), police and justice services

- state and estate insurance, social housing and other social services

- education, training, employment, publishing, health and research services

It is all a question of standardising due procedure, allowing front-line authorities to exercise some discretion, but only within well-defined limits,

Some services do seem unwilling to serve, preferring to rule. We shall see if the draft was worth objecting to, or if the objection is theoretically confused

Sadly the pandemic scale has produced 2 conflicting expedients, but I gather that Germany is insisting on a united and continent progress one would not want to be left out of

 

[Midnattsol]

This is nerve wracking.

 

[Sly Saint]

The draft of the new guidelines were supposed to be published last week for public review, but got postponed. Today the Norwegian ME Association shared the following message on Facebook (auto translated):

Regarding the postponement of the publication of the consultation draft for new guidelines: The Norwegian Directorate of Health has informed us that the postponement is due to some members of the advisory group dissenting. They hope to be able to send out the document, along with the reasons for dissent, within the next week.

At present, we do not know who or how many have dissented, or what the reasons are.
As mentioned, this information will come next week as planned.

hmm deja vu

 

[bicentennial]

Sadly the pandemic scale has produced 2 conflicting expedients, but I gather that Germany is insisting on a united and continent progress one would not want to be left out of

Norway's continental research representative, so far one confirmed speaker from Norway:

Karl Johan Tronstad, University of Bergen

International ME/CFS Conference on 7-8 May 2026 in Berlin, supported by ME/CFS Research Foundation

... aimed at a specialist audience ... will focus on the latest results from ongoing ME/CFS research, while also covering post-COVID syndrome.

Continental incentives for compatible continental Guidelines, including new extensions of the Research Register, updates and reviews, to help Norway search for literature:

Research Funding

New grants were awarded ... on physical and cognitive testing and potential brain imaging biomarkers ... ... call for new project proposals.

Networking and Conferences

... The ME/CFS Research Register was expanded to include Norway and Iceland (now covering six countries), acting as a systematic overview of research activities.

Transparency and Information

Research updates and overviews have been published for Germany, Austria, Switzerland, the Netherlands, and now Norway and Iceland.

... the prevalence and economic cost of Long COVID and ME/CFS ... continued to shape public and political engagement.

International Collaboration

... International Declaration by leading experts calls for global cooperation to expand research and accelerate development of effective treatments...

Political and Public Engagement

... support implementation ... advocating for better biomarker research, diagnostics, therapies, and patient care.....

This charity is doing something right .... The political landscape is different ... iirc ... all major parties mention ME/CFS research in their manifestos and it's often reported on in the media.

Doctors still think it's a mental illness and it's very hard to claim benefits, but regardless: .... ... inspiration?

The inspiration highlighted was for fundraising, but for now I left out the fundraising as its this convergence I want to highlight here, now extending to Norway and Iceland, and very compatible.

This news was from Gernany's charitable research foundation, organising across continents

 

[Utsikt]

In a new update (by the association) the health department say that they have needed more time to finalise the draft and preparing the publication of the public hearing.

They also say that a small group (presumably two or more) have withdrawn from the working group (the working group made no decisions, and only provided input).

It is also mentioned that «many in the group» would like to make «large changes» to the draft, and that disagreement in expected in a process like this.

———

My personal speculation is that Recovery Norway have withdrawn because LP/brain-retraining hasn’t been recommended or might even be warned against.

 

[NelliePledge]

Well as @Sly Saint said up thread Deja vu

 

[Sean]

Yeah, if I had to bet I on it would put my money on the psychosomatic gang trying to pull another public dummy-spit stunt like they did with NICE.

But we will see soon enough. Fingers crossed.