A l
etter to the editor signed 23 doctors/psychologists/psychiatrist objecting against the petition.
Here's a (very quick) translation:
Do we want the healthcare of the ME-bloggers?
Are we going to let bloggers handpick doctors, set diagnosis and choose treatments?
In the newspaper Bergens Tidende Nina E. Steinkopf goes to full war against the national competence service for CFS/ME. Her petition has got over 6 000 signatures, amongst other by the help of an international network of ME-activists and biomedical supporters that has probably never set foot in a Norwegian hospital.
ME-patients have ten times higher activity on different internet forum than other patient groups and the opinions that are allowed are strictly regulated. Facebook, blogs and letters to the editor have therefore no premises for fact checks for the "click-here-rebels" going in protest parades on social media.
The national competence service for CFS/ME keeps to its commission, rules and the guidelines to the Directorate of Health. If we're going to take patient activism seriously, we must throw away today's knowledge based practice and all existing research, and let bloggers handpick doctors, set diagnosis and choose treatments.
The campaign is a petition for a one-sided biomedical approach. It started with a blogger's fight to keep undocumented treatment. This in support of a doctor who experimented with ME-patients with medicines patented by those who performed research on it, and which long and expensive multi senter study didn't show any effect on ME.
In the real world ME-patients gets better, healthy and returns back to work. Patients who gets better, have followed the advice to the health authorities, been seeking broad rehabilitation or more psychological approaches.
ME activists claim such approaches are directly harmful for themselves, and has an artificial division between ME and CFS. This despite that the triggering factors, symptoms, diagnostic criteria and diagnostic codes are the same, and no one can today prove any difference.
Yes, we must listen to the patients because their understanding of their illnesses is crucial for improvement. Research and practise shows that patients with a more broad understanding of illness have bigger room for taking action and better prognosis than those with a pure biomedical understanding, which means is pointing to the cause as something physiological.
We want to express our support to the National Competence service for CFS/ME, which as a broad put together expertise for children, adolescents and adults. They are securing research- and knowledge based services, and through annual conferences for health personell they secure wideness and quality on the health services.
The campaign proves it has never before been more important to keep a national competence service for CFS/ME than now. Norwegian health services shall not be built down by bloggers and activists.
As professional health care workers we want to thank the competence service who doesn't move when it's storming on social media, and who listens both to those who are ill and those who have recovered and who is able to see the whole patients.
