Norway: Blog post about diagnostic criteria, Stubhaug, Lightning Process, Recovery Norge and more

[Kalliope]

ME-patient and activist Sissel Sunde has written an informative blog post where she tells her own story and provides an overview of the ME debate in Norway.

Among other things she tells about participating at the seminar of psychiatrist Bjarte Stubhaug, who claims he can treat 8 out of 10 ME-patients with Mindfullness and CBT.

Norwegian version: SOS! Diagnosefesten er gått over styr!
English version SOS! The diagnostic party is out of control!

Tweet says: I hope the time is soon over when patients are blamed and attributed poor qualities we don't necessarily have, as reasons for lack of recovery.

 

[Hoopoe]

I am convinced that there is a problem with diagnostic confusion and unreliable claims of treatment efficacy.

I am not convinced that we can rely on anecdotes to determine that some treatment helps some particular group of patients but not some other group (lightning process helping stress-releated illnesses but not true ME).

If someone says they had a stress-related illness and recovered with lifestyle changes, later got ME and lifestyle changes didn't work for it, can we be sure that this is correct? I don't think so. If lifestyle changes had not appeared to work, the person would probably have concluded that they didn't have a stress-related illness. It is the apparent response to lifestyle changes that appeared to confirm the idea that the problem was related to stress. However it could also have been the first manifestation of a gradually emerging ME that disappeared and later reappared greatly worsened due to an infection.

Also, responding positively to lifestyle changes doesn't mean you cannot have an organic illness.

I suppose what I'm trying to say here is that we shouldn't just accept the narrative that there is a group of patients out there that's really being helped by things like LP or CBT/GET and that this means they don't have ME.

 

[rvallee]

Among other things she tells about participating at the seminar of psychiatrist Bjarte Stubhaug, who claims he can treat 8 out of 10 ME-patients with Mindfullness and CBT.

Oh, come on. How can it be OK for a licensed physician to blatantly lie like this? The results have been replicated and validated plenty, this garbage doesn't work and is completely inappropriate.

 

[Kalliope]

By not distinguishing between ME from other types of fatigue. I'm astonished myself how long he's been able to carry this on for.. His methods are further discussed here:
https://www.s4me.info/threads/a-4-d...-one-year-follow-up-2018-stubhaug-et-al.7230/

 

[Rick Sanchez]

I am convinced that there is a problem with diagnostic confusion and unreliable claims of treatment efficacy.

I am not convinced that we can rely on anecdotes to determine that some treatment helps some particular group of patients but not some other group (lightning process helping stress-releated illnesses but not true ME).

If someone says they had a stress-related illness and recovered with lifestyle changes, later got ME and lifestyle changes didn't work for it, can we be sure that this is correct? I don't think so. If lifestyle changes had not appeared to work, the person would probably have concluded that they didn't have a stress-related illness. It is the apparent response to lifestyle changes that appeared to confirm the idea that the problem was related to stress. However it could also have been the first manifestation of a gradually emerging ME that disappeared and later reappared greatly worsened due to an infection.

Also, responding positively to lifestyle changes doesn't mean you cannot have an organic illness.

I suppose what I'm trying to say here is that we shouldn't just accept the narrative that there is a group of patients out there that's really being helped by things like LP or CBT/GET and that this means they don't have ME.

Couldn't agree more. No unnecessary concessions.

Every time they make the scientifically bogus argument of good experiences we should point out that they are arguing like those who practice alternative medicine. We have studies, they show the treatment doesn't work. There isn't more discussion to be had.