News from Scandinavia

A big blogger in Norway, Trine Grung, has invited an ME-patient to tell her story on Grung's blog. This has potential to reach a lot of readers who are not usually exposed to anything ME-related.

It is a detailed story about a healthy woman who got Dengue-fever and then developed ME. She tells her story well with facts about ME and context about the disease and research intertwined.

Livet med ME - fra en kvinne som våger
google translation: Life with ME - from a woman who dares

 

Borås Tidning: Öka kunskapen om ME i vården
http://www.bt.se/debatt/oka-kunskapen-om-me-i-varden/

This is an opinion piece written by Dr Carl-Gerhard Gottfries, Gottfries Clinic (biomedical ME/CFS and Fibromyalgia centre + research).

Google Translate, English ("Increase the knowledge of ME in healthcare")
https://translate.google.se/transla...batt/oka-kunskapen-om-me-i-varden/&edit-text=

 

Tonight on Swedish TV2 6.45 pm, the author Karin Alvtegen will be interviewed about her ME in "Fråga Doktorn" (Ask the Doctor).

 

Video replay available here. Karin's interview starts 23:36 min in.
https://www.svtplay.se/video/170482...torn-sasong-21-karin-alvtegen-om-me?info=visa

ETA: Great interview! Thank you so much Karin, you did amazing!

 

In this article, Björn Bragée talks about their approach to ME, at their clinic in Stockholm.

Må Bra: Smärtläkarens positiva besked om ME: "Kommer att botas"
https://www.mabra.com/smartlakarens-positiva-besked-om-me-kommer-att-botas/

Google Translate, English ("The pain doctor's positive message about ME: 'Will be cured'")
https://translate.google.se/transla...iva-besked-om-me-kommer-att-botas/&edit-text=

Not a recommendation...

 

Can you tell me a bit more why you are not recommending it? Is this a controversial doctor in Sweden? No rush in answering and if you are not up to it, it's no problem.

 

Sure, I'm happy to share my personal opionions.

Yes, he's definitely controversial. He was controversial as a public person even long before he took an interest in ME.

I've never met him in person. My opinions are mainly based on what I've read: interviews, articles on his website and elsewhere, comments he has written on other people's blogs etc. I've also read other kinds of less public correspondence, as well as plenty of comments about him written by people with ME who have attended his clinic or have been his patient at some point in time before he started the ME clinic.

He claims to have a very solid knowledge about our disease, but I seriously doubt that (simply because -- in my personal opinion -- it's not reflected in what he says or does). I especially dislike that he keeps presenting his own personal opinions and speculations -- even in media, and other public contexts -- as if they were scientific facts (whether that's intentional or unintentional, I don't know). Regardless, I find it hugely unhelpful and misleading.

He claims to have a biomedical view of ME, but when you read what he actually expresses in interviews etc, the picture is quite different, suggesting that he's actually quite fond of the psychosocial view (which isn't always obvious to the untrained eye at first glance, which is a problem in itself).

He seems to be very keen on doing highly controversial research (invasive, risky, experimental, expensive, and/or not based on the current biomedical understanding of the disease etc). My main issue with that are the completely unnaceptable/unjustified risks of serious harm, and I find it ethically very questionable when you consider informed consent and how risks are disclosed (for example, if they are quickly glossed over or properly explained) etc.

Also, he seems to focus mainly on "stress, tiredness & the brain's sensitivity to pain", which doesn't match my experience nor my understanding of our disease. And he comes across as a "lumper", likes to lump ME together with many other diagnoses that he believes to be "similar" (which definitely rings my MUS/MUPS alarm bells!).

When he talks to others about ME or about people with ME, he often says completely different things than when he talks directly to/with people with ME. That makes me feel very uncomfortable, because it comes across as both manipulative and dishonest, and as showing a lack of respect for pwME.

The experiences of people who have attended his clinic vary greatly, some are happy but many are hugely disappointed and upset (I've heard more than a few horror stories).

I find it hugely problematic that he seems to be actively trying to encourage other Swedish ME researchers to start embracing the psychosocial view.

As a side note: he's kind of a celebrity, used to be on the telly, had a show called Arga Doktorn (The Angry Doctor). Which of course affects how what he says/writes is received by the public.

I could go on and on, but I think this is probably enough for you to get a general sense of why I wouldn't recommend his clinic, wouldn't support his research, wouldn't want him as a spokesperson/advocate for people with ME, wouldn't want him as my doctor etc.

Again, these are only my own personal opinions.

ETA: Changed the wording a bit to make it even clearer that it's just my personal opinions.

 

Could you give some examples of what he has done? If risky for the patients, it sounds really serious.


Edit: There is no sign, as far as I can see on the clinics homepage, that the doctor is considering ME being nothing but a physical disease.
Sorry to others, there is too much text to translate to English https://www.bragee.se/me-cfs

 

Thank you for this elaboration, @mango My first impression from the couple of articles I've read about this doctor have been positive. There were a few things in today's article I reacted to, but there were also some rather good information in there as well. I am longing for more hero doctors into the field, but from your description this one sounds a bit like a cowboy. This is a dangerous time for ME-patients and we are vulnerable for those claiming to have the answers and solutions. It can easily turn out to be expensive on several levels, but I am at the same time grateful for the doctors willing to give it a try. They do need to approach this disease with great care, though.

 

I'm sorry, I'm unable to share more details about the research in question. But yes, in my opinion, definitely serious risk of harm... the stuff of nightmares It was at the planning stage when I last heard. I'm still passionately hoping that he will come to his senses and cancel all the plans (or that the ethics application will be denied, or that he won't receive funding, etc) -- I've heard rumours suggesting that, but nothing has been confirmed for sure.

Yes, as I mentioned, it isn't always obvious at first glance what their view is. But if you read up more, the picture soon becomes quite clear.

For example, here's a quite telling comment, where he literally says "our mission is definitely to work within the biopsychosocial model", "the need to respect social and psychological research and application and to use their results", "psychiatry has a special responsibility", "the correct description bio-psycho-social", and goes on to express some of very well know arguments that other known BPS extremists keep pushing about the problems with body-soul duality, and mentions having a disagreement with the patient association (that holds a biomedical view), etc.

You could also have a look at articles about the neurosomatic approach ("neurosomatik" in Swedish), written by his wife Britt Bragée.

ETA: Changed the wording a bit to make it even clearer that it's just my personal opinions.

 

Opinion piece by Live Landmark in a Swedish newspaper...

Expressen: ME-epidemin är på väg till Sverige
https://www.expressen.se/debatt/me-epidemin-ar-pa-vag-till-sverige/

Google Translate, English ("The ME epidemic is on its way to Sweden")
https://translate.google.se/transla...e-epidemin-ar-pa-vag-till-sverige/&edit-text=

 

I just wrote a message to the newspaper. How could they ever publish such an advertisment for a non-scientific "therapy" by an amateur in the medical field.

Edit: please don´t give the article any clicks

 

... and an editorial in a local Swedish newspaper

Upsala Nya Tidning - Risken med att omfamna ME
google translation - The risk of embracing ME

- And, of course, research is needed. But maybe even more about how hard it is to be human today. It is a paradox that the easier life becomes, with increased prosperity, the harder it will be.What are we going to do with life? Is it really a coincidence that fatigue syndrome is bursting in just Norway, the oil country with $ 8 billion in extra money, for a long time talking about a youth generation that is completely blazed? Why should you work and what is the meaning of everything?

- If we continue to embrace the available explanation model, we risk ending on the Norwegian track. As Live Landmark writes, "Ideas are contagious and affect how we interpret what we see."

 

Article from Denmark where parents to a daughter with severe ME tell how difficult it is to get help. The local mayor has agreed to meet the family to hear their story.

Ugeavisen: Historien om Marie Louise: En familie under pres
Google translation: The story of Marie Louise: A family under pressure

- We need a permanent assistant who has insight into the care of a ME patient, like our daughter. But not many have the specialist knowledge needed to care for ME patients in the right way. Nor do many doctors know enough about the disease. It is our experience that we share with many other relatives of ME patients in Denmark, the couple says.

 

Turns out there were more articles about Marie Louise in that newspaper.

Datter, søster og danser blev væk i mørket
google translate: Daughter, sister and dancer disappeared in the dark

She never really started the psychology study before she got so ill that we got her admitted to the Department of Infectious Medicine at Skejby Hospital. That made everything worse because she was exposed to a treatment in Aarhus, which in our opinion was wrong, says Esben Gustavussen.

- The treatment did not help her at all. They could not help her, they told us after having tried to push her to physical exercise that patients with her diagnosis can not tolerate. She got a lot worse and deteriorated, so they gave up and we were given the choice to send our daughter to a nursing home or take care of her ourselves in our own home.

Kommunen: Hun skal bare i gang igen
google translate: The municipality: She just has to get going again

The job center Esbjerg has insisted (...) that the seriously ill woman, who has a recognized ME diagnosis, is completely bed bound and in need of help around the clock, must "orientate herself towards the labor market".

Speciallæge: Hun er syg og familien har brug for mere hjælp
google translate: Specialist: She is ill and the family needs more help

- We doctors in Denmark in general know too little about the disease. More knowledge is needed. Denmark is behind other countries, and the price is payed by ME patients who might receive a wrong treatment which makes their symptoms worse, says Kim Warming.

En af Marie Louises venner: Jeg tænker på hende hver dag
google translate: One of Marie Louise's friends: I think of her every day

- First, the visits stopped, then the phone calls became too much for her, and we made do with text messages, but finally it was only me who sent some. She could not answer. Then I began to write letters that her mother read out loud, but that had to stop too. Now I occasionally send a flower or something else so that she knows I'm thinking of her.

 

don't know if this has been posted
May 12th - International ME/CFS & FM Awareness Day
18 hrs ·
Severely Ill Swedish Journalist's Video of His ME/CFS Experience

Karik has been severely ill for over two decades. It's taken him five years to make this short evocative even at times brutal 18 minute video of a life that utterly changed one day. It's his call out to the world. Check it out on YouTube

https://www.youtube.com/watch?v=PllS-kLQYzY

Chronic Pain, Chronic Fatigue - An Illness You Can't See
Swedish writer and journalist Karl-Erik Tallmo has been…

 

That is one hell of a video. I wonder how many non-ME sufferers will be able to watch it to the end. I have to decide whether to send it to my Swedish friends or not. I'm hesitant, but I think I must, because if the guy took 5 years to make it, it's the least I can do.

 

Background
A psychologist and previous ME-patient, Nina Andresen, says she got well by her own efforts and hard work. She used to work at the centre of excellence of ME/CFS at Oslo university hospital and started a facebook group for those who have recovered of ME by their own methods - as diets, Lightning Process, etc. It was forbidden to ask critical questions in the facebook group and it turned out that just a couple of the several hundred members had actually recovered.

Anyways, once in a while she writes letters-to-the-editor about how you can recover from ME by your own means and criticises ME-patients for wanting research and documented treatments instead of doing something themselves.

Her latest opinion is from a couple of days ago at a news site for research.
De sier "ME er fysisk - vi trenger medisin"
google translation: They say "ME is physiological - we need medicine"

Those who have recovered from ME agree that the condition felt physiological and was very limiting. Most have recovered completely without any medications. Stories are shared about demanding, long-term and complex rehabilitation courses, as in over-exercise syndrome.
But stories are also shared about the importance of dealing with personality, psychological and relational challenges along the way.

Great reply from psychologist and ME-patient
Today, a psychologist and current ME-patient has written a reply which I though was excellent and recommend you to read.

Hvorfor skal ME-pasienter står uten medisinsk tilbud?
google translation: Why should ME-patients be left without medical care?

Curative medical treatments are provided for non serious conditions, rehabilitative medicine for both physiological and psychological illnesses which are believed to have a strong impact on quality of life, and relief medications are given to conditions that can not be cured.

I find it difficult to understand the argument that a disease which leads to becoming bed bound, a huge loss of function and reduction of quality of life, should not get any medical help. In fact, I can hardly imagine any other condition where it would be legitimate to get published an article that in plain text states that people with this specific condition should not get medical help.

Is being left without medical care suppose to have some kind of upbringing effect? Is the idea that absence of treatment should and will mobilize an internal driving force for self-healing, which is not required for any other conditions or patient groups?

Edit to add: Turns out the reply was written under pseudonym and has therefore been removed. Don't know the background story behind this.

 

Happy to see that all publicity in medias about ME/CFS from December last year made Annika Strandhäll, Ministry of Health and Social Affairs, visit the ME-klinik in Stockholm, Sköndal. Thanks Annika Strandhäll. Hoping for more to come for ME-patients.

A meeting was also held with the National Board of Health and Welfare for the process of formulating facts for decision to the Social Insurance Fund

https://twitter.com/user/status/971298841613012993



00:17 - 7 mars 2018

 

Once again crime fiction author and ME sufferer Karin Alvtegen has been on Swedish television talking about ME and the need for more knowledge and help. It is great that Sweden has such a good spoke person in a celebrity.

Towards the end of the interview she talks about an upcoming big ME conference in Sweden. Anyone who knows more about this? When will it be and who are the speakers?

Interview with Karin Alvtegen (in Swedish)
https://www.tv4play.se/program/malou-efter-tio/3962243