News from Scandinavia

Sean said:
"fatigue disorders"

:grumpy:
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Yup.. The Associations have not been able to change the label.

These are just my observations and opinions:
They do not agree with the label as far as I can tell, but it appears like they’ve chosen to play the game on the government’s terms in order to achieve some influence over the new guidelines etc.

They’re saying that we have to differentiate between those with PEM (i.e. ME/CFS and some LC), and those without.

I’ve been trying to argue that the issue isn’t the BPS conclusions, but the BPS framework itself and both the quality and the results of their studies. So we have to challenge that, or they’ll continue to exert influence and cause harm for so many patients.

Although I can understand why an ME/CFS association prioritises ME/CFS patients.
 
Utsikt said:
The Associations have not been able to change the label.

These are just my observations and opinions:
They do not agree with the label as far as I can tell, but it appears like they’ve chosen to play the game on the government’s terms in order to achieve some influence over the new guidelines etc.
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No argument there. I didn't mean to be critical of the patient reps, just of the profession's obsession with the 'fatigue' construct.
 
Sean said:
No argument there. I didn't mean to be critical of the patient reps, just of the profession's obsession with the 'fatigue' construct.
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I didn’t take it as criticism either.

I’m a bit critical myself because I believe they focus too much on the lack of PEM in the BPS cohorts and not enough on the terrible study designs and results, and the underlying assumptions of the BPS model, both specifically for ME/CFS and in general.
 
The Danish ME Association has shared some promising news via their Facebook page. The Danish Health Authority will from now work to strengthen efforts for ME/CFS patients. The work will be based on the two knowledge reports from Defactum and Implement respectively, as well as the latest knowledge in the area and the involvement of national and international experts.

I am not familiar with the details of this, but the patient organisation seems very happy about it, so assume this is good news. Would be so wonderful with some proper progress for Danish ME patients.

Official statement from the Danish Health Authority
https://www.sst.dk/da/nyheder/2025/Vidensafdaekning-af-ME-CFS

Link to google translation of statement:
https://www-sst-dk.translate.goog/d..._sl=no&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp
 
Kalliope said:
The Danish ME Association has shared some promising news via their Facebook page. The Danish Health Authority will from now work to strengthen efforts for ME/CFS patients. The work will be based on the two knowledge reports from Defactum and Implement respectively, as well as the latest knowledge in the area and the involvement of national and international experts.

I am not familiar with the details of this, but the patient organisation seems very happy about it, so assume this is good news. Would be so wonderful with some proper progress for Danish ME patients.

Official statement from the Danish Health Authority
https://www.sst.dk/da/nyheder/2025/Vidensafdaekning-af-ME-CFS

Link to google translation of statement:
https://www-sst-dk.translate.goog/d..._sl=no&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp
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Context by Millions Missing Stavanger on Facebook (a Norwegian ME/CFS/LC news page):
https://www.facebook.com/share/p/1JLYpvBDPX/?mibextid=wwXIfr

AI translated:
VICTORY FOR DANISH ME PATIENTS ❣️

In Denmark, the WHO's ME diagnosis G93.3, which is classified under diseases of the nervous system, is not used. Instead, Functional Disorder, created by psychiatrist Per Fink, is used and patients are recommended graded exercise and cognitive behavioural therapy.
.

In 2019, the Danish Parliament decided that the country should switch to ME G93.3, but this has not happened. After a lot of good media coverage in 2023, the Minister of Health eventually got involved and a committee was set up to review international research.

And today, 9 April 2025, came the good news!
.

ME Foreningen - ME Association, Denmark writes:

"The Danish Health Authority has today announced that in the wake of the Knowledge Review of ME/CFS in Denmark 2024-25, new recommendations for diagnosis, assessment and treatment of ME in Denmark will be drawn up, as well as an information programme to inform about ME disease in Denmark."

https://me-foreningen.dk/kalender/tillykke-til-de-danske-me-patienter/
.

Hooray! Congratulations, Denmark! ❤️
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Original:
SEIER TIL DANSKE ME-PASIENTER ❣️

I Danmark brukes ikke WHOs ME-diagnose G93.3, som er klassifisert under sykdommer i nervesystemet. Istedenfor brukes Funksjonell lidelse, laget av psykiater Per Fink, og pasientene anbefales gradert trening og kognitiv adferdsterapi.
.

I 2019 vedtok det danske Folketinget at landet skulle gå over til ME G93.3, men det har ikke skjedd. Etter mye bra mediedekning i 2023, kom etter hvert helseministeren på banen og det ble opprettet et utvalg som skulle gjennomgå internasjonal forskning.

Og i dag, 9. april 2025, kom gladnyheten!
.

ME Foreningen - ME Association, Denmark skriver:

"Sundhedsstyrelsen har idag meddelt at der i kølvandet på Vidensafdækningen af ME/CFS i Danmark 2024-25 vil blive udarbejdet nye anbefalinger for diagnose, udredning og behandling af ME i Danmark og en informationsindsats for at informere om ME-sygdommen i Danmark."

https://me-foreningen.dk/kalender/tillykke-til-de-danske-me-patienter/
.

Hurra! Gratulerer, Danmark! ❤️
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Kalliope said:
The Danish ME Association has shared some promising news via their Facebook page. The Danish Health Authority will from now work to strengthen efforts for ME/CFS patients. The work will be based on the two knowledge reports from Defactum and Implement respectively, as well as the latest knowledge in the area and the involvement of national and international experts.

I am not familiar with the details of this, but the patient organisation seems very happy about it, so assume this is good news. Would be so wonderful with some proper progress for Danish ME patients.

Official statement from the Danish Health Authority
https://www.sst.dk/da/nyheder/2025/Vidensafdaekning-af-ME-CFS

Link to google translation of statement:
https://www-sst-dk.translate.goog/d..._sl=no&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp
Click to expand...

A Danish magazine on health politics has today a critical article about this decision. I'm pleasantly surprised by the detailed knowledge the journalist seems to have of the situation for Danish ME patients and what they are up against. She also mentions NICE guidelines.

Sundhedspolitisk Tidsskrift Regeringens løfte om ny viden til ME-pasienter resulterer i to rapporter uden konklusioner

google translation: The government's promise of new knowledge to ME patients results in two reports without conclusions

quote:
Two years after Minister of Health Sophie Løhde promised a new beginning for patients with ME/CFS, the Danish Health Authority's long-awaited knowledge disclosure is now complete. The result is two reports, which describe the current practice in Denmark and five other countries - but without making specific recommendations for future diagnostics or treatment. That work has to start now.

The Danish Health Authority writes on its website that it will now "stand for work to strengthen efforts for ME/CFS patients" and that this will be based on the two reports from Defactum and Implement, as well as "the latest knowledge in the area and the involvement of national and international experts".
 
Kalliope said:
Sundhedspolitisk Tidsskrift Regeringens løfte om ny viden til ME-pasienter resulterer i to rapporter uden konklusioner
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That was a lot better than expected!

In countries such as Norway and Germany, the disease is considered a neurological disorder and is treated with a focus on energy management and symptom relief.
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This is not correct for Norway. Our current guidelines recommend GET and CBT. OCFC, COFFI and RN also hold a lot of influence and power.
 
Utsikt said:
That was a lot better than expected!


This is not correct for Norway. Our current guidelines recommend GET and CBT. OCFC, COFFI and RN also hold a lot of influence and power.
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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.
 
mango said:
This is about some of the complaints that were filed against Jonas Axelsson and the Amelie Clinic/Ameliekliniken
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I have read IVO's decisions in the patient complaints regarding the care at Ameliekliniken. In a series of three posts, I share the content and reflect on the fact that several patient associations (both RME and FSI) have attempted to influence IVO's decisions.

All three posts are published on the blog, starting via this link:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
 
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 own treatment program and how problematic that is.

It's even one of the most problematic journalists when it comes to how articles on ME have been written (BPS researchers good, just want to help. Patient bad, doesn't know their own good). Showing that they do know the subject matter as long as it's not about us.

Hun forsker på effekten av et program hun selv tjener penger på. — Overselger forskning
 
Opinion piece by Marit Stafset about OCFC:
Auto translate:
To the Oslo Chronic Fatigue Network:
Enough is enough

DEBATE: I wonder what the purpose of this research really is.

Marit Stafseth, board member of the Norwegian Covid Association
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The starting point for the studies is the theory that illness triggered by viruses, such as chronic fatigue syndrome (CFS/ME) and long covid, is psychosomatic.

But the studies do not use an open and exploratory method to strengthen or weaken the theory. The researchers go out into the open, looking for evidence that can support their explanation and weaken a biomedical causal explanation.

And to make matters worse, they ignore all the facts that don't support their theory.
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https://www.forskersonen.no/covid19...lo-chronic-fatigue-network-nok-er-nok/2498882

Response by Reme about how «modern brain research» explains everything:
https://www.forskersonen.no/covid19...-covid-er-verken-psykisk-eller-fysisk/2498915
 
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