M.E. awareness news from Norway – PM gave opening speech at awareness event

I’ve started off my new blog with a “good news” story about M.E. awareness from Norway as this is a fitting end to a successful M.E. awareness month.

An arts and crafts exhibition, “Creating my freedom”, was organised by the Oslo & Akershus branch of the Norwegian Myalgic Encephalopathy Association and supported by the Norwegian government, for International M.E. Awareness Day on 12th May. The event had a very important guest, the Prime Minister of Norway, Erna Solberg, who opened the event with a passionate speech about M.E. Clips and an interview with her were then shown on the Norwegian national news programme.

70 people with M.E. from all over Norway donated over 700 art and craft exhibits, which raised a total of 70.000 Norwegian Kroner (£6,000) for ME research at Norway’s Haukeland University Hospital in Bergen, where Fluge and Mella are carrying out the Rituximab trial. Inger Cecilie Hågbo had the idea for the event and led the team of volunteers organising it.

Prime Minister Solberg acknowledged during her visit that M.E. patients had been very much neglected by the health system over the years and said that this should not continue.

“We haven’t had anything to offer to this group, and they have been met with negligence in the health care system. This is because there have been a lot of prejudices towards this illness; that this is the result of a psychologically, almost wanted illness”, Solberg said in her interview to Norwegian national television, NRK. “It really is a scandal. The patients have been met with a lack of respect just because we haven’t had enough knowledge. The worst thing is that we haven’t worked very hard to get this knowledge either. It is important that the health care system make research on ME a priority”.

Acting Secretary General of the Norwegian Myalgic Encephalopathy Association, Trude Schei, commented, “The Association has a strong wish that this government will follow up with funding in order to provide better care, and to fill the huge gap caused by the lack of funding from previous governments during the last decades. As the Prime Minister says, it is a scandal”.

A contributor to the exhibition said of the event, “The day was unique because I wasn’t seen as just a patient, a passive complaining victim of an unfair illness. The exhibition gave me an opportunity to show a different side of myself. I was part of a national collective voluntary effort, and together with many others I got the opportunity to be engaged, and to not only be an ill person in need of help. Together, we were able to show all the people of Norway that we who have this illness called M.E. don’t want to be defined as a diagnosis, we also have another identity – the persons we really are. We want to get well and we have a lot to contribute, she says.

“If we get well, we can come back into society again. We are bursting with creativity and engagement. We want to do something; we want to contribute like we have done with this exhibition. Now we have proved that we can do something, that we don’t give up, even though we have limitations and experience resistance due to this illness”.

Ellen Wilberg's donation to the exhibition
“Tåkeheim”, Ellen Wilberg Watercolor, gouache and ink

This beautiful painting by Ellen Wilberg depicting brain fog is an example of the high class of work which was donated to the exhibition by M.E, patients from all over Norway. Ellen will be printing post cards of the painting and she can be contacted via her Facebook page.

In connection with the Creating my freedom exhibition, Josefine Rausand made a film, “ME is not an invisible disease”, about everyday life for M.E. patients, which had over 78,000 views just in the first week of being online. The film has several different language versions and can be found at the exhibition’s website, Creatingmyfreedom.org, along with more information and photographs from the event.

I became aware of the event when Elin Lunde, a friend in a Facebook M.E. craft group who was one of the team of organisers, posted about the exhibition. Many thanks to Elin for sharing this news and providing me with a press release, which was translated by Hilde Christensen, and to Tom Lund who has given kind permission to use some of his photos in this blog post.

We might be a way off this level of awareness in Britain but it gave me goose-bumps and brought tears to my eyes to hear about this – the PM of a country acknowledging the injustice and neglect that M.E. patients have suffered. It surely gives us some hope? Let me know what you think about it in the comments section below. Comments will be moderated and all views will be respected.

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19 thoughts on “M.E. awareness news from Norway – PM gave opening speech at awareness event

  1. Excellent first post! It is so rare we get strong support from those in positions of authority, we should all take heart from this. Looks like it was a highly successful event too. 😀

    Liked by 1 person

  2. The painting of ‘brain fog’ is dignified and touching. The event showcased the creative talents of people with ME – making them much more than the passive objects of pity.

    Having such high profile endorsement was a great achievement.

    So all round then, yes, an occasion to celebrate. 🙂

    Liked by 2 people

  3. Absolutely, we are so much more than our diagnosis. So encouraged by ME being taken seriously and treated compassionately by those in authority. Hopefully the Prime Minister of Great Britain starts to show the same dignity to ME sufferers soon.

    Liked by 2 people

  4. So glad you liked my post, “The Lure of a New Box” on my pussycats3 blog, which I devote to my three cats. As you can see, I also have the “Sunshinebright” blog. I advocate for ME on this. Also for Autism. My daughter has ME and granddaughter has Autism – Asperger’s. So glad you are finding some positives in your search for acceptance of ME.

    Liked by 1 person

  5. This is an outstanding post and the event is a successful way to blend art and awareness. As a fine artist and patient with ME/CFS in the U.S. I would like to see similar events modeled after this. Thank you for sharing, and to all who were involved, and gratitude to your Prime Minister for embracing this population. Claudia Goodell, MS

    Liked by 1 person

  6. Wonderful, thanks for the link. The Norwegian PM rocks! Having been ill for so long, I am used to the politics around ME, but am truly disheartened and shocked at the neurologist Suzanne O’Sullivan who has recently included a chapter on ME in her book on psychosomatic illness. She has indulged herself at our expense and unfortunately some reviewers on Amazon are happy to indulge her too. Science is winning, but meanwhile we have to tolerate nonsense…

    Liked by 2 people

  7. Regarding your question about: “On making talk translate into results, wonder how things are in Norway 5 months on from PM’s M.E. speech @___Hilde?” I was lucky to find a lecture held on 23 September 2015 by Professor Saugstad ( https://drive.google.com/file/d/0B-v-GK4e0jjtNmNFb0IzNE9aVDQ/view?pli=1 ) He’s one of the people in Norway that knows most about ME. He’s involved in research, he has visited some of the most severely ill, I believe he’s got ME-patients as clients, and has a son with ME. When the art exhibition was held, he gave a talk there and met the PM. In the lecture he says: The PM has been brilliant when it comes to ME. She’s really made an effort. Politicians have been very positive about improving the ME-patients’ situation. The problem is that researchers who see ME as a psychosomatic illness have been able to get their hands on a majority of the money that’s been granted. This has led to a worsening of the situation for the most severely ill in recent years. He also says that researchers on the biomedical side have now been able to build one of the biggest research groups in the world, with the Rituximab-studies in Bergen and with immunology research in Oslo (which Saugstad is part of). (My comment: I believe the majority of the money for this research comes from a major food corporation that put all their profit into the Kavli foundation. Their goal is to improve peoples’ lives all over the world through science – so angels do exist after all 🙂
    When it comes to ME-patients’ situation today, he says: The treatment of ME-patients has in part been very bad. There are many places where the health care system really tries to take care of these patients. Sometimes though, I receive telephone calls on a daily basis from patients and sign. others who are badly treated. So bad, that in my opinion, this is a human rights issue. Many experience harassment from health care personnel, the reason being that there is a notion that ME is a stress reaction, it’s all in the patient’s head, patients’ can almost decide for themselves whether they want to be ill or not. The Child protection service gets involved in many families, where good parents are threatened with removal of their ill child from the family. Saugstad has been involved in several cases that has ended up in the legal system. He says this is a great shame, and nobody has been able to prove that children with ME gets better by being removed from their home, and the Child prot. serv. are not able to come up with better alternatives for the children. Saugstad has also been involved in several conflicts in care homes where severely ill ME-patients live. The conflicts usually revolve around a lack of resources in the care homes, which in turn affects the care of ME-patients negatively. (My comment: The question about care homes and resources is a general and never ending debate. It’s a mixed picture with high quality/enough resources in some places and not in others.)

    I’ve taken a lot of floor space here now, but I would like to add what Saugstad says on a general note: When people say that we don’t know much about ME, they’re wrong. We know a lot, but we still don’t understand all of it. He believes diagnostic test(s) are imminent. He also says that Rituximab is only one among several medicines that are being tested. He believes a breakthrough in ME-treatment is fairly close for many patients, but not all. It takes a few years from a study is finished until treatment becomes available.
    He adds that he’s impressed by the formidable efforts that ME-families are making, and he’s also impressed by the fact that ME-patients never lose courage.

    Liked by 3 people

    • Thanks so much for responding to my question on Twitter, Hilde and I massively appreciate the time and energy taken to give us an update from Norway from an ME patient’s view and for giving us an English summary of Prof Saugstad’s talk. It all sounds very promising indeed and as if research is moving in the right direction at last. With great biological research coming out all the time now, I’m hopeful that it won’t be long before we have a breakthrough, in addition to the change in attitudes that will come from it. Thanks again so much, Hilde and very best wishes from the UK 😀

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  8. Thank you, you’re welcome! I’m looking forward to both a possible treatment AND a change in attitudes towards ME in equal measures. The last time I met a doctor who thought ME could be cured by CBT, I sort of lost it. I suddenly found myself standing and bending over him (he was short), waving my angry index finger very close to his nose, while saying in a loud voice that he was wrong, and science would prove me right that ME is a physical illness. I was quite shocked by my own behaviour, it just happened as a reflex, and I realised that I’ve just have had enough now. We parted with an agreement that we should share my experience with Rituximab treatment sometimes in the future over a cup of coffee.

    Liked by 1 person

    • It would be good if he is open to having his mind changed. A good doctor (and scientist) will change their mind based on new evidence, so hopefully all this new research coming out will change some minds, as well as a test and a treatment!

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  9. The ME community needs to be educated that “Original CFS” is congruent with ME, and not condemn CFS sufferers indiscriminately for using the term..
    The latter Oxford and Fukuda definitions are distortions, intended to trivialize the purpose of the Holmes definition.

    This is the only way patients ME and “original CFS” patients can unite, and work with a common purpose.

    Like

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