The Norwegian National Competence Unit for CFS/ME claims that most of their patients recover. They say this, without referring to anything that can document the claim. A complaint has now been filed with the County Governor.
Read more in the newspaper Nettavisen: Filed complaints about claims from medical practitioners at Rikshospitalet
Here is an overview of 16 studies documenting that ME patients deteriorate when treated with graded exercise treatment and cognitive behavioral therapy: J.T. Haugen: GET and CBT are ineffective or cause harm in ME patients. These are the methods recommended by the Competence Unit.
Here is an overview of 43 studies with a 2-day cycling test where the deterioration is objectively measured: J.T. Haugen: CPET is an objective marker for PEM in ME patients.
A number of countries’ health authorities have, independently of each other, concluded that ME is a chronic, multisystemic disease for which there is no cure: USA (2014), USA (2015), USA (2016), Netherlands (2018), Belgium (2020), UK (2021), USA (2023) and Germany (2023).They have stopped recommending such treatment because of the harmful effects.
Extraordinary claims require extraordinary evidence. The Competence Unit seems to believe that all of these health authorities are wrong and that they themselves, without any documentation – are right?
ME patients have reported deterioration due to these methods for decades. A large Norwegian study has documented how patients are treated when they encounter the health and social services. – We have examples in our material that can hardly be described as anything other than pure abuse, Fafo researcher Anne Kielland says to the news channel TV2.
A few weeks ago the United States government and National Institute of Neurological Disorders and Stroke published a “ME/CFS Research Roadmap” recommending 47 prioritized research areas. https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group
The Norwegian Competence Unit on the other hand, cling to their power and influence. They are responsible for how ME patients are treated in Norway. When they turn a blind eye to the scientific documentation, and on top of it all portray themselves as victims, it feels like an additional abuse.
Is it any wonder we patients react?
Nina E. Steinkopf
Former HSEQ Chief Executive
Now: ME patient and writer at www.melivet.com
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