Opinion piece in the Journal for the Norwegian Medical Association by Kjempengren-Vold, answered by Prof. Wyller - "Hvorfor ME-pasienter må bli hørt"

Lena Kjempengren-Vold from the association the ME parents has written a great opinion piece for the Journal for the Norwegian Medical Association about the need for listening to ME patients.

She criticises the approach to ME from the COFFI-collaboration and the Oslo Chronic Fatigue network.

GET is not a treatment for patients with PEM.

She says it's important to acknowledge ME patients as sources of insight and to move on from outdated approaches.

Kjempengren-Vold: Hvorfor ME-pasienter må bli hørt
translation: Why ME patients must be listened to

 

Prof. Wyller from the COFFI network has written a reply rejecting Kjempengren-Vold's arguments and concluding that CBT/GET are the best treatments.

CFS/ME-pasienter blir hørt - og det finnes behandling som hjelper
translation: CFS/ME patients are being heard - and there is treatment that helps many

quote:
Many studies show that cognitive behavioral therapy and related techniques have a positive effect on symptoms and function in patients with CFS/ME and that there is a low risk of side effects (14–16) .

This also applies to closely related conditions such as post-covid-19 state (long covid) (17) .

There has been concern that such approaches could be harmful for patients who are particularly bothered by post-exertional malaise (PEM), but recent research results do not suggest this (9, 18, 19) .

In a recently published clinical treatment study of a cognitive-based rehabilitation program for post-covid-19 state, we found that the effect was best in patients with the greatest exercise-induced symptom exacerbation, and at follow-up there were fewer cases of severe exercise-induced symptom exacerbation in the treatment group than in the control group (9) .

 

I struggle to find a single true statement in Wyller’s post. It’s like he’s living in an alternate reality.

 

Yes, but he has experience, credentials and references. He will appear trustworthy for many of the readers.

Sad to see the excellent and thorough work by TjenestenogMEg on ME patients' experience from health care services and treatments who found that the majority never return to work after GET, as research contributions of "limited quality".

 

His source critique is on par with high schoolers - just find the sources that agree with you. I don’t understand how stuff like that gets published.

 

It mostly just does a mirror opposite of all the arguments. They even have the same "we have to listen to patients (who recovered) to move away from outdated treatment models" and now they're even at the "akshually, people with PEM do even better from GET". Completely unserious.