News from Scandinavia

He keeps mixing up ME and chronic fatigue, has not registered the very serious issues that have been raised re the competence service and is generally vague and dismissive.

Unsurprising, but disappointing.

 

Last week professor Karl Johan Tronstad (researcher working together with Fluge/Mella) and professor Kristian Sommerfelt (paediatric neurologist with over 20 years experience from ME, also cooperating with Fluge/Mella) came to Stavanger to give lectures on ME.

The event was organised by the Norwegian ME Association, Rogaland County, and was completely sold out a day in advance. 250 people participated.

Here is a summary of the lectures (in Norwegian)

 

Thank goodness that with the horror of having LP gain such high status in Norway there are still a few people able and willing to fight the good fight there.

I hope the lecture gets widely shared.

 

Coming down from that high will be particularly hard for those who keep huffing it insisting there totally is a dragon floating out there and it's those who can't see it that are obviously wrong because, ohh look at those brightly colored scales.

NLP has no scientific basis. That this nonsense keeps being pushed by medical institutions should be a red flag that things have gone off the rails in some areas of medicine.

 

It seems likely that a ward for ME patients might open in Västerbotten (North in Sweden) by next summer.
For time being ME patients must travel all the way to the capitol, Stockholm in order to see a specialist in ME/CFS, so this is promising news.

Folkbladet: Mottagning för ME-sjuka på gång: "Vi är förstås väldigt glada"

 

Heartening to see a tweet like this. It's from Jonas Ekström, Swedish MD and politician.

It says:
It feels I should devote more of my doctor time to ME/CFS. A frustrating and debilitating condition, where patients struggle to receive help
https://twitter.com/user/status/1073694578820161537

 

ME epidemic among children in Norway .
https://www.expressen.se/nyheter/me-epidemi-i-norge-barn-isoleras-och-sondmatas/

Feel free to translate and explore more of this news from a Swedish evening paper.

 

So... more people are getting diagnosed because of greater awareness. We know most cases are undiagnosed, therefore many cases are still to be diagnosed and they do now that better information is available. This all seems normal. It's not an epidemic, it's just that the cases are actually being counted for the first time.

By the same logic, following the MRI's ability to detect MS, there was a new epidemic of MS... diagnoses. Because they used to be misdiagnosed. Then they were diagnosed. Exact same number of people, just counted differently. Consequently, cases of "hysterical paralysis" dropped dramatically. As expected.

I'll always be amazed at some people's ability to look at something that is expected and be puzzled about it happening because they refuse to believe that it's even real. Sick people behave like sick people. Some people can't accept that. Doesn't change that this is what's happening with "medically unexplained symptoms", aka undiagnosed patients.

But this disease is definitely something people should be terrified of. It can happen to anyone, to their spouse, to their children, to themselves. And there's nothing they can do about it and they will lose everything, more often than not including their spouse and children (or ability to have either). It's definitely not an epidemic, but it should terrify people that it could happen to them. As long as this remains discussed rationally of course, as no doubt some will try to confuse the issue.

 

@rvallee , I totally agree with you that there is no (signs of an) epidemic in Norway. I just translated the headline from the article.

I hope that someone, with more energy, wants to sum up the article in English.

 

A paywalled article from a local Norwegian newspaper about a young man (20) who has suffered from ME since he was 11. For some years he could only go to school once a week. But he managed to complete and now works as an apprentice for a big IT-company. His apprentice time is extended from 2 years to 4 years, as he can only work part time. But the company is very happy to have him and says he does an excellent job and is a good example of what they are looking for in apprentice candidates.

A positive story about increasing the possibilities for inclusion in work life by being willing to make some adjustments.

Stavanger Aftenblad: ME-syke Carsten (20) er et funn for IT-giganten Evry (ME-sufferer Carsten (20) is a treasure for the IT-giant Evry)

 

Norwegian ME-sufferer Marianne Grøtte has written a wish list for Christmas. Not to Santa, but to politicians.

She gives some background information about the situation for ME patients and wishes earmarked funding for medical research, increased knowledge, ambulant teams in every region with competence on ME, updated guidelines, more knowledge and better help from the Labour and Welfare administration.

Radikal Portal: Et julebrev fra en ME-pasient
google translation: A Christmas letter from an ME patient

 

Oh, I'm so sorry, that our ME-debate is slipping past the boarders and into Sweden

Reidar Due doesn't normally participate in the public debate here, but he works with and have published with Wyller....

So much wrong, and mostly based on rethorics, as is the custom of our bps-crew... Just his example of cancer patients not disagreeing with the treatment - the first think I saw in a newspaper after reading this post? A cancer patient disagreeing with his treatment.

 

I´m not sure that the debate is hurting ME-patients in Sweden in the long run as more and more people are interested in what the "so far unknown" disease is about. I think we have passed the tipping point where the mass of knowledge is more serious than the opposite. There have been lots of good articles in Sweden since a year ago, and finally the Socialstyrelsen ( similar to NIH) began working on a protocol for ME-patients that soon will be published. Hopefully it will bring something good to PWME.

Also the tragic death of a family, where the two young daughters were murdered by their parents, and the parents took there lives, has been truly upsetting among people after the story has been told in media. The reason to why they took their lives was, according to what the parents said in a letter, that there was no treatment or life for their daughters who had ME.
I really hope the debate in Norway, and everywhere, will soon be totally serious and helpful to ME-patients.

Edit: spelling and grammar (probably not enough )

 

That's true, you have a very different situation, and hopefully climate in Sweden, and hopefully the tragedy in Bjerre (?) may be a wake-up call also. Never mind me, and my gloomy outlook at the moment, guess the holiday season is getting at me.

 

During the recent years the Norwegian Parliament has allocated earmarked grants for the RituxME study. Now that the study has finished, the government decided to remove this annual post of 2 million NOK (231 457 USD/ 183 801 GBP).
Patients have mobilised and protested and during Saturday's resolution for the health budget of 2019 at the Parliament, it was decided to take the post back in again.

The report from Parliament says: many suffers from chronic fatigue syndrome (ME), and it is very important to continue research on this field. The majority points to the 2 million NOK which has been allocated annually for several years to a clinical multi center trial on ME, led by Helse Vest, in addition to 3 million NOK in 2018 as a consequence of a revised national budget for 2018. The study ended in 2017, and the results are analysed during 2018. The majority wants a continuity within ME research and therefore suggests an allocation of 2 million NOK for this purpose for 2019.

This is hastily translated by me. Original text in Norwegian here.
I'm not 100% sure this means the funds goes straight to Fluge/Mella's research, but I'm sure more details will follow.

 

Good article about ME in a Norwegian women's magazine.

We learn the story to Sol, who got ME after mononucleosis when she was 17 years old. She is still sick now, 4 years later.

Paediatrician and neurologist Kristian Sommerfelt has long experience with ME and provides updated and relevant information.

He says it's important to get diagnosed and to regulate activities. It's important not to push yourself and to not start or continue with different kinds of treatments with no effect, as it takes energy, which ME patients have limited resources of.

- Some say that treatments as for instance Lightning Process can be of help, but it can actually lead to severe deterioration. One have to be sceptical towards such none-documented, alternative treatments, Sommerfelt explains.

KK: Sol fikk ME etter kyssesyken
(not able to google translate this one)

 

The Swedish government ordered two public assessment on ME this year.

The first was published two days ago and is discussed in this thread:
https://www.s4me.info/threads/swedi...f-social-services-sbu-with-report-on-me.7277/

The second came today and is done by The National Board of Health and Welfare.

The report says that more research into ME is needed. The scientific basic and clinical experience is not sufficient to develop guidelines. There is lack of agreement internationally about diagnostic criteria and different views in Sweden on how to treat the patients. There are also different views on causes and treatments between those who have a biomedical view, where the illness is explained only with biomedical factors, and those with a biopsychosocial view, where also psychological and social factors are included.

Summary in Swedish and link to full report:
Socialstyrelsen: Mer forskning behövs om ME/CFS

 

NHI - Norwegian Health Information - is a company providing an independent digital medical reference site for general practitioners. According to their website they are Scandinavias largest supplier of health information to health professionals. The information is written by doctors.

For years and years their information about ME has been absolutely dreadful. There are still articles about ME on their site pushing a biopsychosocial approach to ME, and pointing towards patients having certain types of personalities.

This background makes it even greater news that two brand new articles on ME and children/adolescents have just been added. They are written by neurologist and paediatrician professor Kristian Sommerfelt who has worked with ME patients for over 20 years. He is very knowledgeable and updated on recent research and developments.

So finally there is now some decent info about ME at NHI, explaining PEM, supporting the patients and their families and actually giving GPs and schools some useful advice.

Kronisk utmattelsessyndrom (CFS/ME) hos barn/unge
google translation: Chronic fatigue syndrome (CFS/ME) in children/adolescents

Kronisk utmattelsessyndrom (CFS/ME) hos barn/unge: Informasjon til skole
google translation: Chronic fatigue syndrome (CFS/ME) in children/adolescents: Information for school

 

Thanks for all these updates. It sounds like things are looking up in Sweden. Thanks to all the patients who've been working to improve things there.

That sort of view of things worries me a bit, as it makes the biopsychosocial sound innately reasonable - psychological and social factors are an important part of all peoples lives. The problem with the biopsychosocial approach to ME/CFS is not that it acknowledges this (as I expect supporters of a biomdical approach would), but that it encourages medical staff to belief that they should interfere with the psychological and social aspects of patients lives even when they do not have a good understanding of what they're doing, or whether they will do more harm or good.

 

I always find this type of explanation disingenuous. If an illness is precipitated by biologic factors but is maintained by psychosocial factors it is only the psychosocial factors that are relevant after there is no recovery back to health after initial infection.

But it always reads like they are more reasoned in suggesting that they are inclusive of all three. This is not the case. Their view of people who continue to be ill is purely psychosocial. The trick of how they maintain the sensibility of this view is that the mind and body are one therefore it is also physical.

This should suggest that the psychosocial manifestation is subject to a physical treatment.