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.
No argument there. I didn't mean to be critical of the patient reps, just of the profession's obsession with the 'fatigue' construct.
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
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: Original:
”new recommendations for diagnosis, assessment and treatment of ME in Denmark will be drawn up” Very good news. I am keeping my fingers crossed that the recommendations will not say patients need CBT and GET to get better.
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".
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.
Reme and OCFC was invited specifically to give input to the new guidelines for ME/CFS in Norway. They were allowed to bring up to 8 representatives. The team at Haukeland (Fluge, Mella, Tronstad, etc.) did not receive an invitation. https://lifewithmebysissel.wordpress.com/2025/04/15/silje-reme-fikk-gi-innspill-likevel/
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.
A lot more info by Sissel after a FOI request: https://lifewithmebysissel.wordpress.com/2025/04/15/oppfolging-moter-vedr-ny-retningslinje/
If anyone wants to discuss what is reported by Sissel in the link above, we have relevant threads on the development of new guidelines, on the FaFo/SINTEF research team behind Tjenesten og MEg and on the Oslo Fatigue Consortium. The two groups have attended a meeting at the Norwegian Directory of health to talk about their work in relation to ME. The new treatment guidelines in Norway for "fatigue including CFS/ME" "Tjenesten of MEg"/"The services and ME" Oslo Fatigue Network
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
