Norway: Guidelines for chronic fatigue and ME/CFS

Kalliope

Kalliope

Senior Member (Voting Rights)
I think these guidelines need a separate thread. 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
 
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