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.

PM Solberg giving her opening speech
Credit: Tom Lund

PM Solberg with some of the exhibitors
Credit: Tom Lund

PM Solberg talking with an exhibitor
Credit: Tom Lund

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”.

“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.