It’s known that US, UK, Belgium, Nederland and Finland have issued new guidelines downgrading CBT and rejecting GET. Searching the internet, there are some things also written about Australia, but as far as understood this work has not been concluded? So, asking the community; are there any other countries (or organizations) than the above mentioned that have made similar changes in their guidelines, downgrading CBT and rejecting GET?
Welcome to the forum, @jornt_h It's an interesting question you are asking, and I hope members here can help you. What are the developments in Germany, for instance? @Michiel Tack or others, do you know? https://www.s4me.info/threads/germa...-and-bmbf-taking-initiatives-for-me-cfs.17265 It could perhaps also be of interest to know how many countries even have a guideline for ME.
This work in Australia has barely just begun. As I understand it, the NHMRC will be using the UK's new NICE guidelines as a starting point and they are planning to consult with stakeholders.
One caveat: In Belgium and the Netherlands, the Health Council has written a report where they mention that GET should not be given to ME/CFS, but that is not the same as an official guideline. In the Netherlands, for example, there is an official guideline on the management of ME/CFS created by multiple stakeholders. It's outdated and still recommends GET and CBT. A new guideline is in the making. In Belgium, there's a convention between the federal government and CFS reference centres. The government pays if the CFS centre meet the criteria stipulated, which in the past has always included treatment with GET and CBT according to he protocols used in randomised trials. So this convention has sort of been our official guideline. At the moment there's only one CFS centre left (in Leuven) and I think the convention will be renewed taking the recent NICE guidance into account. I think it has been announced that a German report on ME/CFS will be created but that this proces is still ongoing.
Hi @jornt_h I'm curious to know what brought the question up for you. Since the guidelines were recently improved / updated in the UK are you thinking how this might impact other countries? And are you hoping to encourage new guidelines where you are? In Canada the ME guidelines have been archived. So there are no current guidelines. I'm hoping that means that new guidelines will come and also be an improvement for all Canadian people with ME. It's difficult for people who do not have this illness to understand what is and is not possible unless they take the time to listen very carefully and respect knowledge from experience. I hope you are finding the forum useful.
I started at a text on topics having changed to a more positive perspective for the ME community, e.g UK and the new NICE-guidelines. The goal is to have it printed in one of the major Norwegian newspapers or a weekly medical journal. Or at least as a blogpost. So far I have learned that the Belgium and Dutch status wasn’t as good as I had expected. However, the Canadian guideline been withdrawn is worth mentioning.
thank you for your efforts, as more and more countrys drop the GET and CBT bs, even the underdeveloped countries like Argentina, where there are no guidelines, will benefit