Norway: 2026 Guidelines for chronic fatigue and ME/CFS - draft published

Utsikt said:
That is different from saying there is a lack of evidence for it. We have clear evidence against it.
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"We can't give them nothing!" or similar arguments, in addition to not being able to accept it can't be not helping at least some, I guess is against it.

But with other patient groups in Norway currently now at high risk of losing their specialized rehab services, which they want to continue having, spend the money on those services and let us be for crying out loud.
 
Midnattsol said:
"We can't give them nothing!" or similar arguments, in addition to not being able to accept it can't be not helping at least some, I guess is against it.

But with other patient groups in Norway currently now at high risk of losing their specialized rehab services, which they want to continue having, spend the money on those services and let us be for crying out loud.
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Yeah, it’s the easiest cost cutting measure ever. Stop the unhelpful help, and start prioritising hospital staff like the ambulatory cancer teams that could also help the more severe. It’s disgraceful that the sicker you are, the less they seem to care.
 
I couldn't attend the webinar today due to work, but have been told it is a complete waste of energy. It was confirmed that ME/CFS has been lumped with fatigue as an individual ME/CFS guideline would be ignored by doctors who don't believe in the illness.

I got some comments about lack of understanding of methodology, but since I haven't listened myself I don't know the specifics.
 
I think these guidelines need a separate thread. (mod note: this has been done) There's been some posts about them in the Scandinavia thread, but here is a good intro in English from David Tuller (thank you!!) who has interviewed Trude Schei from the Norwegian ME Association about the guidelines. She has been one of the patient representatives in the advising working group and has taken dissent after the draft got published.

Trial by Error: Norway's Problematic Draft Guideline Combining Long-Term Fatigue and ME/CFS

Quote:

Negatives, in no particular order:

  • We lose sight of ME/CFS as a separate disease

  • Overall, the guideline is confusing.

  • Getting an ME/CFS diagnosis has no implications for further treatment.

  • Doctors do not have to make a diagnosis, even if symptoms are present.

  • Other symptoms of ME/CFS are not addressed, like POTS.

  • The very real danger of deterioration as a result of too much activity/exercise/repeated PEM is not communicated in a meaningful way. Compare that to the section of medication, where side effects are clearly communicated! Patient participation and informed consent in treatment is an important thing in Norway, but how can a patient give informed consent to treatment if the risks are not communicated?

  • There is no mention of the fact that ME/CFS can be life-long, and that patients will need ongoing care.

  • There is no mention that many experience a fluctuating course of illness, and that care may have to be adjusted over time. The guideline suggests functional capacity evaluation as a one-time thing – but patients will have varying degrees of severity over time, and will need varying levels of help.

  • The guidelines give an unrealistically positive impression of likely prognosis and of the possibility that a case of ME/CFS will be of short duration. This bias could create problems for patients. If schools, welfare officials and health care personnel expect improvement as the standard course, they may end up blaming the patients themselves for their illness. This issue arises currently when child protection services get involved because children with ME/CFS do not improve as expected.

  • The severity of ME/CFS is inadequately addressed. There is chapter about “care in the home” but the perspective of severe ME/CFS is absent in the other parts of the guideline.

  • The guidelines are supposed to be based on both research, patient experience and clinical experience. Consensus documents on treatment, like Euromene and ICC, or clinical experience from Bateman Horne, are, however, not taken into account. Hdir claims doing so would “undermine” the work in the working group, and that they are only looking at Norwegian experience (???? Based on the two GPs who were there, who had seen a very limited number of patients???) When it comes to patient experience, they do not cite any of our survey reports, and they compare a few anecdotes from Recovery Norway with reports large, structured surveys. This gives equal weight to a large body of well-documented experiences, and a few anecdotes.

  • The guideline is wordy but vague and unclear. This leaves it open to interpretation, and my fear is that if it stands, everyone can find something in there to support their own point of view.


Trial By Error: Norway's Problematic Draft Guideline Combining Long-Term Fatigue and ME/CFS | Virology Blog

By David Tuller, DrPH On February 4th, the Norwegian Directorate of Health published a draft of a “national professional guideline” for diagnosis, managemen ...
virology.ws virology.ws
 
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There have been some opinion pieces on the guidelines draft already. Yesterday the researchers Anne Kielland and Arne Backer Grønningsæter wrote a very good one summarising the debate so far. They are from the research project Tjenesten og MEg who studies ME patient's meeting with the health care services.

In this opinion piece they write that everyone is a bit right on chronic fatigue, but that people are talking past each other. "The challenge arises when studying different patient groups, but generalising the finding to all those suffering from long-term fatigue".

"Based on our research, our most important input to the guidelines remains to differentiate treatment recommendations for patients with ME/CFS and the group struggling with other long-term fatigue"

www.aftenposten.no

Alle har litt rett om langvarig utmattelse

Debatten preges av at man snakker forbi hverandre.
www.aftenposten.no www.aftenposten.no

google translation: Everyone is a little bit right about long-term fatigue
 
The ME Parents, one of the user organisations in the working group of the guidelines draft, and who recently took dissent sent a letter today to the Directorate of Health asking for distinguishment between ME and other fatigue. They've shared the letter in full on their website with an intro with these news:


In the letter, we refer to extensive email material from 2024–2025 in which Per Fink has been in ongoing dialogue with consultants at Implement Consulting Group, who are preparing a report on ME/CFS on behalf of the Danish National Board of Health.

The correspondence shows how Fink actively attempts to influence both the use of terms, understanding of the disease and the knowledge base in the work. In this dialogue, Fink also recommends Norwegian professionals as sources of information about the situation in Norway. In the e-mail correspondence, he forwards, among other things, a response from Vegard Bruun Bratholm Wyller at the University of Oslo.

Wyller writes: “I myself have no clinical activities at the moment, but Maria Pedersen (postdoc in my group) also has a clinical position at Oslo University Hospital that involves treating patients with CFS/ME and other functional conditions. Tom Farmen Nerli, who is a PhD student with me, has his primary affiliation with the Coastal Hospital in Stavern, a rehabilitation institution with long experience with this patient group. Together, I think we can say that we represent the “state-of-the-art” in Norway.”

In this formulation, CFS/ME is explicitly mentioned together with “other functional conditions”, while the environment describes itself as “state-of-the-art” in Norway. Norway is described in the correspondence as a country that is moving towards the same approach as practiced in Denmark. Thus, we risk a situation where Norway and Denmark may come to refer to each other as justification for the same framework of understanding.

This can develop into a form of circular reasoning that in practice contributes to placing ME within a functional understanding of the disease – without a clear and open decision being made about such a redefinition. In that case, it would have major consequences for patients with ME.

www.me-foreldrene.no

ME-foreldrene til Hdir: Skill mellom ME og «annen utmattelse»!

ME-foreldrene har i dag, 4. mars 2026, sendt et brev til Helsedirektoratet der vi ber dem etablere et eksplisitt og operativt skille mellom sykdommen ME – hvor utmattelse kun er ett av mange sympto…
www.me-foreldrene.no
 
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Patient advocate Nina E. Steinkopf has written a lot about the process. Here are the articles thus far.

Is the Competence Service for CFS/ME competent?
Norwegian l Auto translation

Norwegian Directorate of Health guidelines: ME is not MUPS
Norwegian l Auto translation

The launch of NoRU
(a register by the National Competence Service for ME/CFS)
Norwegian l Auto translation

The guideline's "knowledge base"
Norwegian l Auto translation

The guidelines knowledge base ll - A Piece of crap
Norwegian l Auto translation

The ME Associations take dissent
Norwegian l Auto translation

The unbalanced distribution in the working group of the Directorate of Health
Norwegian l Auto translation

The Directorate of Health's dog whistle
Norwegian l Auto translation

Where are the nursing advice?
Norwegian l Auto translation

The strategy
Norwegian l Auto translation
 
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The Norwegian ME Association asks patients with ME and Long Covid to give input for the association's response to the guidelines drafts.
They have made a survey for this. It's possible to skip questions and it's possible to write in one's own words.

The survey is open until March 22nd.

www.me-foreningen.no

innspill til høringssvar til retningslinje

Vi inviterer alle med ME, Long Covid, deres pårørende og andre interesserte til å gi innspill til høringssvar til den nye retningslinjen
www.me-foreningen.no www.me-foreningen.no
 
Kalliope said:
This is the guideline draft, if anyone wants to have a look. I assume it's possible to auto translate it:

www.helsedirektoratet.no

Utmattelse – langvarig utmattelse, inkl. ME/CFS HØRINGSUTKAST

www.helsedirektoratet.no www.helsedirektoratet.no
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Below is a translation of the Index, by some Duck Duck Go translation facility explained here

To get this facility, you may type .... translate .... into the Search box at DuckDuckGo.com

- then copy and paste chunks within the word limit (and give it a little time to brew)

Each section of the Index links to a chapter (to be translated) - the links I inserted might be muddled. Time for tea.
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Consultation Draft (index): Fatigue – long-term fatigue, including ME/CFS

1. Background, method and process

2. Assessment, treatment and follow-up

The GP should ensure a comprehensive assessment, and provide individually tailored advice and information during the assessment

A comprehensive survey of the patient's situation should be used as a basis for follow-up and treatment

The GP should initiate and coordinate measures that can stabilise and promote function on an ongoing basis – also during the assessment

For the diagnosis of ME/CFS in adults, the Canada criteria are recommended

Patients with long-term fatigue, incl. ME/CFS, should receive guidance in activity regulation

Interdisciplinary assessment in the specialist health service is recommended to be carried out in the event of an unclarified diagnosis or where a specialised assessment is necessary due to the complexity of the condition


3. Need for health care in the home or in an institution

The business manager should ensure a predictable and coordinated follow-up of patients in need of health care at home or in institutions

The municipality must consider confidence-building measures in relation to service recipients who refuse necessary health care


4. Children and young people

The GP should carry out an initial assessment of children and adolescents, and refer to a paediatric department if the symptoms affect participation in school and activities and no improvement is seen

Specialists in paediatric and adolescent medicine should ensure a comprehensive mapping of medical history and symptom picture, as well as rule out differential diagnoses, in children and adolescents with persistent fatigue

The doctor responsible for the assessment should ensure that a coordinated and individually tailored follow-up is planned

Healthcare personnel responsible for the follow-up of the child/adolescent should ensure a comprehensive and coordinated follow-up

Kalliope said:
The Norwegian ME Association asks patients with ME and Long Covid to give input for the association's response to the guidelines drafts. They have made a survey for this. It's possible to skip questions and it's possible to write in one's own words. The survey is open until March 22nd.

www.me-foreningen.no

innspill til høringssvar til retningslinje

Vi inviterer alle med ME, Long Covid, deres pårørende og andre interesserte til å gi innspill til høringssvar til den nye retningslinjen
www.me-foreningen.no www.me-foreningen.no
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We have 2 weeks from today until Sunday March the 22nd.
 
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dave30th said:
Just posted another update:
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From this update:
"The parents group further noted:

“It was…stated that the work would be based on NICE. The draft does not show such a correspondence. Studies that NICE considers to be of low or very low quality are considered here to be of medium quality, without the deviation being explained…A separate guideline for ME/CFS based on strict criteria is necessary. A clear dichotomy within the current guideline is a minimum.”
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bicentennial said:
Consultation Draft (index): Fatigue – long-term fatigue, including ME/CFS

3. Need for health care in the home or in an institution

The municipality must consider confidence-building measures in relation to service recipients who refuse necessary health care

4. Children and young people

The GP should carry out an initial assessment of children and adolescents, and refer to a paediatric department if the symptoms affect participation in school and activities and no improvement is seen

Kalliope said:
The Norwegian ME Association asks patients with ME and Long Covid to give input for the association's response to the guidelines drafts. They have made a survey for this. It's possible to skip questions and it's possible to write in one's own words. The survey is open until March 22nd.

www.me-foreningen.no

innspill til høringssvar til retningslinje

Vi inviterer alle med ME, Long Covid, deres pårørende og andre interesserte til å gi innspill til høringssvar til den nye retningslinjen
www.me-foreningen.no www.me-foreningen.no
Click to expand...

We have 2 weeks from today until Sunday March the 22nd.
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NICE guideline: NG206

1.1 Principles of care

1.1.5

Explain to people with ME/CFS and their family or carers (as appropriate) that they can decline or withdraw from any part of their care and support plan and this will not affect access to any other aspects of their care. They can begin or return to this part of their plan if they wish to.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on principles of care for people with ME/CFS . Other supporting evidence and discussion....

1.7 Safeguarding

1.7.1

Recognise that people with ME/CFS, particularly those with severe or very severe ME/CFS, are at risk of their symptoms being confused with signs of abuse or neglect.

1.7.4

Recognise that the following are not necessarily signs of abuse or neglect in children and young people with confirmed or suspected ME/CF

- physical symptoms that do not fit a commonly recognised illness pattern

- more than 1 child or family member having ME/CFS

- disagreeing with, declining or withdrawing from any part of their care and support plan, either by them or by their parents or carers on their behalf

- parents or carers acting as advocates and communicating on their behalf

- reduced or non-attendance at school.

For a short explanation of why the committee made these recommendations and how they might affect practice, see the rationale and impact section on safeguarding. Full details of the evidence and the committee's discussion.....

1.11 Managing ME / CFS

1.11.10

Only consider a personalised physical activity or exercise programme for people with ME/CFS who:

- feel ready to progress their physical activity beyond their current activities of daily living

or

- would like to incorporate physical activity or exercise into managing their ME/CFS.

For a short explanation of why the committee made this recommendation and how it might affect practice, see the rationale and impact section on managing ME/CFS . Full details of the evidence and the committee's discussion....

Terms used in this guideline (glossary)

Therapy blueprint

This summarises the therapy and provides a basis for future independent self-management. The blueprint may include the therapy formulation, strategies that have been helpful, 'warning signs' and triggers of flare‑ups and how to manage them, and goals for the future.

It is important that the therapy blueprint is led by the person themselves and is in their own words, supported by guidance from the therapist.
 
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