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About lack of help for severe ME-patients on national news (tv2) in Norway

Kalliope

Kalliope

Senior Member
Messages
367
Location
Norway
The Norwegian news broadcaster TV2 has as main story on their front page today about ME-patient Eirik who had to crawl from an ambulance in order to get inside his house. The paramedics refused to assist.

It also contains an interview with prof. Saugstad - a paediatrician who for many years have spoken up for ME-patients.

In addition there's been an interview with the general secretary of the Norwegian ME Association, but so far only on telly, maybe a link will be provided later.

Here is a google-translated version of the article:

https://translate.google.com/transl...ww.tv2.no/nyheter/8889523/&edit-text=&act=url
 
Kalliope

Kalliope

Senior Member
Messages
367
Location
Norway
Sasha said:
@Kalliope, how would you describe the general situation in Norway? I'd hoped that Maria Gjerpe's MEandYou campaign, and having Drs Fluge and Mella often in the news, might have helped change attitudes over the years.
Click to expand...
I would say in general it is still poor :-(

CBT and GET are still often suggested as treatments, and the whole LP-nightmare has done a lot of damage and spread a lot of wrong information about ME in Norway. LP has also had a warm welcome among several doctors - which I find incomprehensible.

The Norwegian Directorate of Health wrote an instruction guide on ME published a few years ago. This guide represents the "official" view on ME. There are a lot of good things in it, but the psychosomatic views are also well represented, so doctors are following guidelines when they recommend CBT/GET.
Luckily the Norwegian Directorate of Health will participate at the upcoming Invest in ME-conference - I hope that will lead to an updated guide.

A large and thorough report was published in 2011 on the lack of care for ME-patients in Norway (by SINTEF). Several politicians have since spoken up for ME-patients, but there are still doctors with a psychosomatic view on ME who are seen as authorities on the subject - and I guess it is not a politician's place to challenge them.

I think there is a lot of confusion and uncertainty among health care providers regarding ME. We need clear advice and updated knowledge from "above" and someone high up in the system with enough knowledge on ME to challenge the psychobabbles.

The fact that the Research Council asked ME-patients what kind of research they would like to see on ME, and the fact that ME-patients have criticised the PACE-trial and other research projects on ME with low quality, has not been popular among certain academics - and there's been debates unveiling how unpopular it is that ME-patients raise their voices and have opinions on research.

A couple of Norwegians were in the Cochrane Review Group who assessed among others the PACE-trial, which has led to many articles and news stories from them about the excellence of CBT and GET as treatments for ME.

So there's still a long way to go. But at least most people have heard about ME, that wasn't the case when I got ill over 20 years ago and I assume it is still not the case in some countries...
 
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