Petition against National Competence center for CFS/ME with BPS approach in Norway - anyone can sign

It's hateful, and wrong interpretion of papers that actually exists.

United we stand (Olaug Lian) - is used to argue that "the online ME-community is not open for differing views and debate". Internet forums is very misleading in this paper, what she actually used as source materiel was 14 personal blogs - not where debate usually takes place. The author have confirmed on request, but not ammended the paper.

https://www.ncbi.nlm.nih.gov/pubmed/25488934


The other measured the traffic on different actual online patients fora. But this was in 2009, when the "ME-forum" (name of forum) was the main source of information about ME in Norway. There was no other place to turn to. But it still wasn't the most active forum, it was a forum for pain patients that had the most postings. They did not measure the overall internett use for different patients groups - as it's usually presented by the bps-crowd.

http://www.academia.edu/6289964/Com...r_disorders_an_observational_study_Background

 

When I was a student I was intrigued by a young psychiatrist who said that it would be better for an adolescent patient if another doctor took charge of his case. The psychiatrist explained that he was 'negatively transferred' to the patient - and then explained that this was psychiatric jargon for not liking the patient.

That struck me as remarkably honest and worthy. It seemed to be an admission that being a psychiatrist is all about trust and that you cannot manufacture trust when it is not there.

So maybe the puzzle is that so many doctors and psychologists who are clearly negatively transferred to PWME choose to treat them. Sometimes I think a lot of psychiatrists do not have much clue about human nature.

 

Lege = medical doctor/physician, yes

google seems to translate the titles rather well? with this exeption:

Georg Espolin Johnson, play in Nav - should be physician, working for NAV = labour and welfare administration

 

I think it's also the strong bias in who feels the need to voice their opinions? There are supportive, caring doctors and psychiatrist as well - but they ususally don't get involved in the public debate.

 

This is not the end of the ME debate in Bergens Tidende. I wrote a piece that they rejected because there were several “answers” in the pipeline already.

Edit; wrong word.

 

This debates in Norway are been ya... intensive and ongoing for several periods during the year - all year.

Like i.e: Professor Ola Didrik Saugstad, talks about ME-debate, may2018 invest in ME magazine «A harsh debate about ME in Norway – A personal view from one of the participants»

https://totoneimbehl.wordpress.com/2018/06/08/a-harsh-debate-about-me-in-norway-saugstad-mai2018/

(in eng. lang)

 

What really disappoints me it that some people retweet this and comment “This is really good” and so on. Not many, but some. Some people fall for it, even intelligent people.

When I tweet back on the retweets: “we have to have a health system that cares for all sick - also those ME sick that don’t get better from get, kat, LP and so on”, they tweet back, “well certainly the sick aren’t helped by the advocates!” meaning, the advocates are awful! and they sympathize more with the sick who are “exploited” by the advocates.

The situation for the people with el-sensitivity comes to mind. In Norway we have really horrible advocates for that, very very active and many people fall for it. There we really have those advocates that really are exploiting the patients. I think that is special for Norway. The most famous is Einar Flydal who writes a lot on his blog, pretending to be an expert. A week ago he wrote that ME has its origins in microwave disease/microwave syndrome. Off.

It is some comfort to think that it is probably because of that, that we get the same accusations.

 

The petition's initiator, Nina E. Steinkopf, has written a reply as an open letter on her blog.

Forakten for det mest sårbare pasientene
google translation The contempt for the most vulnerable patients

Finally, I would like to thank everyone of you for the debate in BT. Rarely has the disdain for the patients, the condescending way and your haphazard way with research and facts been more obvious. Now everyone can see how ME patients are treated - and the petition is receiving more and more support.

 

It's really not a good look when the contempt is made so obvious and public, it reveals serious fundamental problems into why we are so badly mistreated. The evidence for it abounds in anecdotal accounts of patients being mocked and insulted to their faces, but this is usually kept within the confines of the clinic and only comes from the perspective of patients' account. I think many people just refuse to believe it when they see it, an understandable reaction.

But the contempt dripping from this letter may be harder to swallow, hopefully. This is not normal. No one has ever made evidence-based claims that we are deserving of such prejudice, brought upon because for all practical purposes we are fobbed off in the same category as unstable psychotics, strung out drug seekers and malingerers, an association that is pure prejudice. We are not considered mentally incompetent, it's just heavily implied and applied in practice. All the weight and consequences, none of the accountability.

 

Nina E. Steinkopf has a short reply in the same newspaper.
Vi krever å bli hørt
google translation: We demand to be heard

The Competence Service mixes ME with other conditions and bases its recommendations on low quality research. Furthermore, the management of the Competence Service recommends an undocumented alternative treatment that is potentially harmful.

The debate about whether ME is psychosomatic or physiological should be terminated. US health authorities have removed the advice on cognitive therapy and graded training against ME. There is no basis for claiming that ME can be cured using psychological interventions.

 

Completely concur.

Any debate should be around the ethical failure of the medical system to protect from harm and to provide appropriate care.

ME is not the problem. ME discrimination is.

 

This certainly seems to me to be a recurring theme. People who need to hear/believe that there is something that can be done now as opposed to there is nothing available that consistently works to at least a moderate and long lasting degree.

The idea that there is nothing that will provide consistent and long-lasting relief for an illness that people report is quite devastating seems to cause some sort of cognitive bias in favour of something anything. And there seems to people ready and willing to exploit that.

 

The petition has now got over 7 000 signatures!!

Original link to petition in Norwegian https://www.underskrift.no/vis/7358/
English translation of petition details and instructions on how to sign here https://melivet.com/2018/08/25/petition-to-help-norwegian-me-patients/

 

A very good reply today in Bergens Tidende, by Trude Schei, Assistant Secretary general and Olav Osland, Secretary general of the Norwegian ME-Association.

It's toned down and polite, setting the petition into contexts - the national competence service is currently beeing formally evaluated, have they reached their goals/made a positive impact for patients situation. At the same time sort of shaming the 23 just by refering to knowledge about ME-patients lived experience in the current clima of the health system, from several larger user surveys and urging for dialog. A real strong contrast to the tone in the letters from the health professionales.

Well done!

https://www.bt.no/btmeninger/debatt...rlx8FJCRt8zenZy5KpdiGicRWMAeJcZa1Pb-ARNHvnays

https://www.microsofttranslator.com...rlx8FJCRt8zenZy5KpdiGicRWMAeJcZa1Pb-ARNHvnays

 

This petition has now come to its end. It reached the impressing number of 7265 signatures. They were mailed to the Ministry of Health and Care Services today. The initiator Nina E. Steinkopf has written a blog post thanking everyone who contributed and especially her husband who has supported and stood by her during this time.

Underskriftskampanjen er avsluttet
google translation: the petition has ended

I'd like to thank Nina for the enormous amount of work she has put into this petition and for its impressive results. It will be very interesting to see how the Ministry of Health and Care Services will response.

 

The initiator of the petition, Nina E. Steinkopf will be meeting the Minister of Health and Care Services on Monday.
This is a dialogue meeting where also representatives from the Directorate of Health, South-Eastern Norway Regional Health Authority and the National Competence Service for CFS/ME will be present.

Best of luck Nina!!!

Here is a short article about the meeting from the newspaper Bergens Tidende:
ME-pasienter får møte helseministeren
google translate: ME patient is meeting the minister of health

 

New blog post from Nina E. Steinkopf.
She has sent a letter to the Minister of Health and Care Services Bent Høie whom she met with in March when she handed over the petition with over 7 000 signatures asking for the removal of the management for the national competence service for CFS/ME.

The Norwegian Directorate of Health wrote in their input for an evaluation of the competence service that the service lacks a system to measure the effect of their activities. They also lack a way to get an overview of how many patients there are with different degrees of ME, how the patients are assessed and followed up. The competence service's reply was that they were unsure on how to do that, except for registering participants at their seminars and reading their evaluations.

Nina E. Steinkops refers to the recent report from the Norwegian ME Association based on a survey among severe ME patients (discussed in this thread) as an evaluation of the competence service's work and asks for the ministry's estimation of how big the damage must get before action is taken.

Kompetansetjenestens ansvar for de alvorligst syke ME-pasientene
google translation: The Competence Service's responsibility for the most severe ME patients

The purpose of national competence services in the specialist health service is, according to the Government's instructions, to develop and raise the quality of the services rendered throughout the assessment- and treatment process. The role of the competence service is to provide guidance, knowledge and competence dissemination to the health service.This makes them a major contributor to information about the disease in the health sector. The management of the Competence Service is therefore responsible for the desperate situation that the patients are in. The competence service is responsible for ensuring that the wrong information about the disease is communicated to health personnel, and responsibility for ensuring that patients are subjected to harmful and irresponsible treatment. The ME Association's report shows the result of the service's activities; the result of "dissemination of expertise" and 6 years in service.

 

So, in short, the competence service doesn't know if it is competent, and doesn't seem to have much idea of how to be competent, but is happy to carry on being the national expert service...

 

Yes, that sums it up. Or, as senior doctor at the Competence Service, Ingrid Helland, said in an article last year about the petition (translated hastily by me):

- We try as a competence service to manoeuvre through all research from this field, including biomedical research. But we get criticised from both sides. From those who think our advice goes too far in psychological direction to those who think our advice goes too far in physiological direction. I hope that the fact that we are being criticised from both sides indicates that we are able to keep the balanse.

The logic seems to be that since everyone are unhappy with them, they must be doing a good job..