News from Scandinavia

I'm sure it is custom in many countries to give commercials a break during holidays and to leave the space for non profit organisations to share their messages.
At Dec. 26th on the commercial channel TV2, a short ad will come from the Norwegian ME Association about ME. This will probably reach a lot of people and be a great way to validate ME and patients during the holiday.

 

A really good feature on ME from the commercial channel TV2 today.
It contains an interview with ME patient Marianne who describes life with ME very well and how problematic it was for her being diagnosed so late and receiving wrong advice.
Also an interview with ME researcher Olav Mella. I think the interview was made during a recent lecture on ME he held for the Health And Care Services Committee at the Parliament.

The article contains text and short interview videos.

In the video with Olav Mella he says:
I believe a lot of the reason lies in not knowing the cause of the disease. Some of the patients look healthy, but feel dreadful - and we have no blood tests for the diagnosis, no clinical diagnosis. The knowledge about the disease among health care personell has been far too low.
- Do we see an improvement of knowledge in the health care system?
It absolutely seems so, but unfortunately one also sees at the training institutions that the teaching in what this disease is varies a lot and is much based on the single lecturer's impression of the disease.
- And this effects how the doctors follow up their patients?
It seems so, yes.
- Do you have any thoughts on how this can be improved?
The view on the disease must change through knowledge. There is an increasing knowledge base internationally, and this must be spread to the medical faculties and to those who have finished their educations. The knowledge base there is insufficient.
- Is there something that can be done on a political level to achieve this?
Yes. What I think is lacking today, is that there's no defined group of doctors, a speciality, with responsibility for this patient group. If someone got a concrete responsibility, and not random specialities or random doctors handling the patient group I believe quicker progress can be made.

TV2: Kampen om ME-diagnosen

Not able to google translate the article, sorry.

 

New big feature article about ME today. I wonder if this might become a series?

In this article we get to learn Iselin's story. She's 26 years old and has been sick since 2014. When the first tests at the doctor were normal, she was sent home. She then went to a doctor with a private practice who diagnosed her with ME after to consultations. Iselin knew that it often takes months to get diagnosed with ME, so found a new doctor. This doctor didn't believe ME is a disease. She is still waiting for a proper diagnosis.

The leader of the Norwegian Association for General Practice, Petter Brelin, says there is a lot one can do to give a diagnosis, but that these illnesses doesn't turn up on any of the tests. There are no assessment that can reveal this is what the patient has. That's the main reason it is difficult to give the diagnosis. He emphasise that diagnosing is not like jurisprudence. There are no rules when it comes to giving a diagnosis. This can make it hard both for the doctor and the patient, particularly when the doctor doesn't know where to refer the patient. Some places this works well, other places it doesn't work at all, according to Brelin. He is not familiar with doctors not giving particular diagnoses on principle. He is however familiar with doctors giving diagnoses without proper assessment on beforehand.
- The diagnostic process is something where one must give time, and one must be thorough. These are serious life altering conditions, and you're not taking the patient seriously by being swift.

TV2: Kampen om en diagnose

 

2 lectures from a seminar by The Norwegian ME Association Nov. 27th are now available on YouTube.

Is ME/CFS caused by energy deficiency in the body's cells? - prof. Karl Johan Tronstad for the university in Bergen (scientist working closely with Fluge and Mella and their team)

https://www.youtube.com/watch?v=_GIIaK-SwIs

Genetic testing to explore the immune system's role in ME/CFS - prof. Benedicte Lie. Researcher at the department for medical genetics and Institute for immunology at Oslo University Hospital and the university in Oslo

https://www.youtube.com/watch?v=aDChU6PfOv0

Language Norwegian. No subtitles available.
The third lecture was by David Tuller. This was also filmed and will be available later.

 

Read the «stories» published on tv2, and on the more philosophical side on the last day of 2018.

First: if made with some effort and knowledge by the journalist, pieces trying to describe ME in general, can turn out ok. When adding anecdotes it can go anywhere! That is not ment as criticism of the ones exposing themself, but it's often more a result of the journalist focusing on simplifying. The ME community have a big pedagogical challenge. We need simplifications that ordinary people can relate to, but they are also dangerous. It will never capture ME, not even close, and guess its also within the human DNA so to speak, to undermine how hard things actually are. The flu that never ends, is a much used attempt to describe. It's a long time since giving up describing anything at all to anyone, but back in the days I myself used the example of flu. Mainly just to avoid the complex details, just to give a tiny inaccurate hint. Looking closely at it, I find the example of flu quite bad. My guess is we tend to use it more to please the one asking, pleasing they’re need to understand more than doing ourselves a favor. That said, the human brain works in good ways, and once you’ve done with a flu, you can’t longer imagine how it actually was, how bad you really where at the time. Maybe some sort of denial in a positive way. I don’t know, but my guess is that it takes a few weeks to forget how bad a bad flu can be. Thank god for that, for the great working brain, but hey, how hard can it be living with the flu, even if it's like that on a daily basis/365? I’m a little afraid that we end up in the eyes of the majority, with ME being something between full blown flu and post-flu. People are at different stages of the disease in they’re own life and compared to others, so it would be simplifications all over, and guess I react to this now because the disease with all complex and bad symptoms are more like a bad flu X 10 or 100.
Thought the first part was good, the second part also quite good, but in relation to the above, I find the «everything is a little slower, a little more difficult and harder than normal». That must be the mother of all understatements! At the very beginning, there are also some sentences highlighted that gives the impression that ME is much like some sort of post-flu.
Again: people are at different stages, some recovering, many deteriorating, and so on, so that’s an explanation. On the good side here, it seems she by now is quite moderately affected/in some sort of recovery, so that’s good. Lets just hope that the average reader gets some knowledge, cause this is obviously not easy.

When it comes to the leader of the Norwegian Association for General Practice, Petter Brelin, he first says that he is unaware of doctors not setting diagnosis of principal reasons. Well, we do know that it happens here. Brerlin then acknowledges that the process of diagnosis in many cases are unsatisfying. Dont know if that is worth anything at all, words are just words, but it is good that he points this out and focus on the need for a thorough process when diagnosing. Should be unnecessary to say, but not here..

Happy new year to everyone. Hoping 2019 will be better.

 

The Norwegian public broadcaster NRK has an entertainment programme called "What's wrong with you?" where a team of doctors compete with non-MDs with access to Google on guessing patient's diagnoses. It's a popular programme as well as educational.

In yesterday's program one of the patients suffered from ME. She enters the stage in an electric wheel chair. One of the first clues given is that she had to quit her job due to cognitive problems. She says she became increasingly more nauseous and dizzy. Pain in muscles and joints. A "heaviness" in movements. It's difficult to find the right words, and can be difficult to concentrate on reading. With adjustments and aids she's able to go out and be social approximately once a week.

The three doctors could choose between ME, burn out syndrome and Irritable Bowel Syndrome.

They asked:
Do you get more tired afterwards when you've been out?
Patient confirms

Do you have difficulties with sleep?
Patient confirms

Do you have problems with the bowel?
Patient confirms

Do you have problems with temperature regulation?
Patient confirms

Blood in your stool?
No

Doctors conclude in unison on ME.

The patient has shared her experience on Facebook. She seems very pleased with how she was met and how considerate NRK and the doctors had been, and how careful they all had been regarding how much strain to expose her to.

Link to program, this section lasts a few minutes and is towards the end.

 

Kristine tells her story about being a severe ME patient to a street magazine called =Oslo.

Jeg møtte et sykt mørke
google translation: I met a sick darkness

Then I was admitted to Rikshospitalet for assessment. Mom had told them how little I could handle. Yet they pushed me to take neurological tests. I had to take my nose and put my heel on my opposite knee. I was terribly bad and asked for a break. The doctors just kept asking me questions. They wondered if I wasn't just afraid of pain. I felt they didn't think I was as sick as I was. Then I broke down in tears. Daily, I had to take exhausting examinations, such as MRI and ECG, even though I told you I couldn't bear it.
When I was moved to Bærum hospital it became even worse. For two months I lay there without goals and meaning. They placed me in the infectious medicine department, who didn't want me. The staff scolded me for not being able to turn myself around. They talked demonstratively with loud voice, even though they knew I was just tolerating whispering. They pulled off the curtains, even though I didn't tolerate light.

When I had to go to bed, I could stay for over an hour and wait for help. It was very scary. When I could not speak, I became much more aware of body language and gaze. I easily picked up people's irritation. The only time I relaxed was when my mom or dad came to visit.

The nurses had been a little positive in the beginning. When I did not show any signs of recovery, they looked at me as wrong. I was terrified to be bothered initially. Soon I was extremely humble, like a battered dog. One thing is to be seriously ill. You just have to deal with that, and nobody has to blame it. To cope with those who were to help looked at me as a burden was worse. It made me another person than I really am.

 

'old' news (not sure if it was posted before); but Crawley was in Denmark in Nov 2018:

10th Danish Paediatric Infectious Diseases Symposium
9-10 November 2018
Comwell Klarskovgaard, Korsør

10.00-11.00 CHRONIC FATIGUE SYNDROME-epidemiology and treatment
Esther Crawley, University of Bristol, UK

https://dskm.dk/wp-content/uploads/2018/09/10th-Danish-Paediatric-Infectious-Disease-Symposium.pdf

was there any coverage?

 

Don't think there was any coverage, I personally didn't hear anything about this :/. Really wish I had.

 

The Norwegian ME Association is now accepting applications for allocations to medical research into ME. Closing date for applications are in April and the researchers/projects who get the allocations will be announced on May 12th. I believe this is for Norwegian projects only, but not a 100% sure.

Norges ME-forening: Utlysning av midler til medisinsk forskning på ME - 2019
google translate: Announcement for funds for medical research on ME - 2019

 

I believe this

will probably limit it to Norwegian projects only.

 

The Norwegian ME Association accepts applications to them, but researchers can also ask them as a patient organisation to apply for allocations to their project from a foundation called Extrastiftelsen. This foundation only gives to Norwegian projects, but it's not specified if the same goes for the Norwegian ME Association.

 

The Swedish journal for the psychology association has a short article about a psychologist with ME who were first denied benefits as ME is something which can be treated. She just won a case in court where the court agrees that there are no medical rehabilitation or treatments that can reduce the limitations of ME.

Psykologtidningen: Domstol: "ME/CFS är inte behandlingsbar"
google translation: Court: "ME/CFS is not treatable"

 

Wow, that will hopefully be very helpful for Swedish patients. As I understand it they have frequently been denied benefits for ME. Maybe @mango or @Helen will know more?

 

Live Landmark came out with an opinion piece in the national newspaper Dagbladet this morning, where she used the tragedy in Sweden (family of four found dead after the two kids being diagnosed with ME) to promote LP and "hope" for PwME. She is unreal.

I didn't read it as I didn't want to give her the attention, or put myself through reading her crap. (Edit: So I might be off base)

Now apparently withdrawn without notice, I guess they're hoping no one noticed it was published at all.

ETA: If anyone should wish to read it I think it's still available by direct link https://www.dagbladet.no/kultur/nar...cTHWBwsFh4T4XpIThsGmokICVbSILxiMzUoO0gBh0buPw

ETA2: I archived the page with webarchive for future reference should it be taken down completely

 

Archived - https://archive.is/hRpUc


Headline - "When the doctor makes you sick." That was all I had the stomach to read

I would guess PFU (= the press' organ for self policing) would have a thing or two to say about the use of childrens story in this manner, children have special protection in their etichal rules, that are applied to all norwegian newspapers.

 

A bit happier story - NRK, the national broadcaster are doing some stories on gaming and online friendship.


Today, a mother to a boy with ME telling how she started engaging with his gaming, and saw the value in it, and how it added to his life - forming real friendships

Added value - the mother is Turid Kristensen, a member of Parliament - "How did the battle go?"

https://www.nrk.no/ytring/hvordan-gikk-datakampen_-1.14404105

 

That Landmark piece looks like it's back up (not sure if there are any differences to what came before) - google translate here: https://translate.google.co.uk/tran...cTHWBwsFh4T4XpIThsGmokICVbSILxiMzUoO0gBh0buPw