Letter from a severe ME-patient

Guestblog by Cathrine Sollesnes, a severe ME-patient in Norway. ❤

Norwegian version (Google translate).

I have decided to share something quite personal with you. Today, the 8th August is #SevereMEDay, and I’ve had severe, now close to very severe ME, for 7 years.

“It is considered a day for remembrance of those who suffer from and have died from severe myalgic encephalomyelitis (ME), as well as a chance to educate the public about severe ME and advocate for better treatment and research.” – Quote World ME Alliance.

There is a saying in Norwegian: «ME tar ikke livet av deg, men tar livet fra deg» – ME doesn’t kill you, but you lose your quality of life. For me, and others, this is not quite accurate. On this very day a year ago, 8th August 2021, I was very close to death. My body almost gave in, because it was (and is) so weak. I’m still traumatized and don’t know how to deal with it.

During this last year, I have been refused more help, more assistance by my local Health- and Welfare Office. I have also been refused a stay at Røysumtunet Rehabiliteringssenter, a center that opened its doors in June 2021. It is the only rehabilitation center with expertise on severe and very severe ME in Norway (and personally I have not heard of any other centers of this quality in the world).

This rehabilitation center has been a lot in the media lately, since Katrine Grini was refused a stay there. Røysumtunet has helped people from very severe to even moderate degree of ME! It can help me (and so many other people) to get considerately better. It is -the- MIRACLE that we’ve been praying and looking for until a cure is found. ❤

The stay in this rehabilitation center usually lasts 6-12 months. The reason for refusing me, is that Røysumtunet is owned by a private (non-profit) organization.

In their recent rejection of more assistance, my local Health- and Welfare Office claimed to have provided responsible health care. At the same time, they said that a long term stay in Røysumtunet would have been really beneficial for me, but that the municipality, Stavanger kommune, does not provide such help. They claim that they are sort of stuck, even though there is a law that states that the municipality can buy private healthcare.

The conclusion is therefore that Stavanger kommune, in this case chooses not to provide specialized care, because it is them- and not the state that has to pay! This is happening in Norway, the country that takes pride in having “the world’s best healthcare system”.

One of the people from the local office who is involved in my case, recently asked my GP if there was a possibility to take this matter further up the system, somehow. This person seemed much more positive towards the benefits of rehabilitation at Røysumtunet than they were in January, when I got an oral refusal from the municipality.

Unfortunately my GP couldn’t do so, but I will continue to try, starting with this post.

In under a month, it’s my «10 year anniversary» with ME, which all began with a simple throat infection. I must admit that it would be a highly appreciated gift to get an acceptance letter to Røysumtunet.

So I invite you, Stavanger: “the oil capitol of Norway» to a discussion. Will you be one of the municipalities that change history for the better, and grant your citizens (myself included) a stay at Røysumtunet? Will you partake in saving the lives of the severely ill and forgotten #MillionsMissing patients?

It’s worth checking out this funny, yet informative YouTube video from Jessica Kellgren-Fozard about (severe) ME to #LearnFromME. If you struggle understanding what ME is, I’ll bet you’ll be a bit wiser (and even have a little chuckle) after watching this!

Best Regards,
Cathrine Sollesnes

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