Norway: Røysumtunet, a centre for severe ME patients

Promising news from Norway.

The Norwegian ME Association is working together with the foundation and institution Røysumtunet with plans on developing care for patients with severe ME.

The institution was established in 1965 and will soon have 12 available places, as an offer for patients with epilepsy is moving to another location.

If all goes well this will become a national offer. The institution already has experience with severe ME and has received input from prof. Saugstad and Kjersti Krister (long term carer for son with severe ME) on how to provide good care.

It looks like a beautiful place.

Norges ME-forening: Røysumtunet - et fremtidig senter for ME-syke?
google translation: The Norwegian ME Association: Røysumtunet - a future center for ME patients?

 

We really need something like this in the UK. We need care homes that are suitable for us, so that if we are unable to stay at home temporarily or permanently there is somewhere safe to go.

We also need hospital beds that are safe. Last time I heard there were two beds in Leeds in a psychiatric unit that cater for us. I know someone who spent quite a long time there.

Charities could be pushing for this, I think?

 

I believe there is a desperate need for respite beds for ME patients, however I'm not sure I would want to see charities pushing for this.

The danger of it turning into some sort of rehabilitation or forcing people into therapy is simply too high. Especially in a psych unit. Even if you aren't under threat of section it's not like you can just walk out yourself.

I used to manage mini breaks, meditation and yoga, when I was much milder. Every activity was optional. It gave me a break from the same four walls, though energy management in a new environment was a challenge. More importantly it gave my husband a bit of space and a break to do his own thing for a few days without worrying if I was being fed and watered.

 

Yes of course, in the current climate it is potentially unsafe, and my friend was extremely worried about going to any bed in a psychiatric unit. It was largely ok but there were some issues. They came out in better shape than they went in, largely due to having 24 hour care, which is not provided at home. They have slid back to at least as bad as before, due to this.

I am trying to make the point that Trish is making, that there is a need for safe places with appropriate care for respite or in cases where eg we may have an accident and need inpatient care or care home as our home environment is suddenly not suitable. Definitely not advocating for a place to be tortured with GET and harassed about our thoughts and beliefs about illness!

Knowing it was possible to go to hospital for something other than ME and have the ME taken into consideration re environment etc would be good. And should happen. As it is we face an impossible choice if we need other treatment.

 

Not to mention old people’s homes. I dread the fragrances for a start!

 

@Invisible Woman
Yes I went on a couple of retreats many years ago and it was so wonderful. Quiet, meals provided and often being around others in silence! I wish I was still able.

 

And of course there are the severely ill people who are cared for by aging parents who do not know what will happen to them in the near future.

parents of a friend had thought about turning their home into a charitable organisation providing places for several people with ME in this situation, as a way to ensure somewhere for my friend to be in future. Of course the day to day struggles have prevented any progress with this.

 

I think it’s generally good. I’m impressed with the norway m.e association for engaging with this and this follows their really good report on functioning and outcomes in the severely affected last Year Which could be powerful if it was used in advocacy.

There was talk decades ago of making a safe place, a special living environment, not medical unit, for severe m.e, it used to be in the magazines but never happened. Dr bansal wanted to set up a severe unit but could not get funding

i feel generally this type of thing isn’t considered by the U.K. main charities which is why I think that they Fail the severely affected. They haven’t even visited Leeds, one of two places left To go inpatient in uk, to do an assessment afaik so people are pretty much going in their blind and I’ve heard mixed reports, buts it’s emphasis is Essentially rehabilitation , that seems to be why people go there, so if you need safe care/assessment, it’s not the place and I gather it’s hard to get funding so it’s not there to fill the emergency gap. I also fear they are hyping their success Based on the self selecting nature of people who go, there was a severe young lad in the press recently trying to get in there “for treatment “ thinking it would be faster than the rehabilitation at home. Why should it be really?

Ultimately I find it depressing that Good institutions are needed because in the very severe forms it’s so serious & all we have to after years offer the severely affected community is this and even then it’s just in Norway.

 

Røysumtunet is now looking for a doctor for a part time position to work with severe ME patients at their institution from next year.
They're looking for someone with experience with ME, is specialised in general practice or has other relevant background, and who is interested in research.

It's a 20% position starting up 1st March 2020.

Link to job ad (in Norwegian):
https://www.finn.no/job/parttime/ad...ucAfnKHEpWqanHN04Yyt9e7ZbsLwKhKKXmAWs4wK1Iz94

 

And now it's official!

Røysumtunet will open for care for severe ME patients, probably already during next spring. There will be 12 places for ME patients. They also hope to become a place for research projects, for instance for testing treatments that might provide symptom relief.

The Norwegian ME Association has written this article about the news which also includes pictures of the place:

Røysumtunet og ME-foreningen åpner tilrettelagt omsorgstilbud for alvorlig syke ME-pasienter
google translation: Røysumtunet and the Norwegian ME Association are opening adapted care services for patients with severe ME

Ola Didrik Saugstad is a professor, pediatrician and a member of the ME association's medical professional council. He has been central, especially at the beginning of the process of finding a suitable place for institutional places for the seriously ill with ME.

- I have traveled a lot to patients and relatives over the years, and have seen the enormous need for institutional places for seriously ME patients. They are at home, often cared for by relatives, and in some cases they have not been in contact with the health service for several years, says Saugstad.

- Several have contacted me and asked about this. I have great faith in this offer, he says.

 

The article about these news from the Norwegian ME Association has been translated into English by EMEA. Probably much better than google translate

https://europeanmealliance.org/news-Q42020-006.shtml

 

The Norwegian ME Association has uploaded a brochure from Røysumtunet about their care facility for severe ME patients which is soon ready to accept patients.

It's a PDF, so not possible to google translate, but you can see more pictures of the place. It looks beautiful.
https://www.me-foreningen.no/wp-content/uploads/2021/02/Roysumtunet-Serviceerklaering-ME_web.pdf

 

The doctor they hired is Dag G. Storla. He is a specialist in internal medicine and infectious diseases.
He has a private clinic for CFS/ME and borrelia.

I attended a lecture by him several years ago. It was at a conference promoting ME treatment at a Norwegian clinic by the Dead Sea. The treatments that clinic were offering were basically air and sun. But Storla seemed quite updated at that time on biomedical research on ME (so have no idea why he was so enthusiastic about the clinic by the Dead Sea). Otherwise I don't really know much about him, but hope he will be a good and caring doctor for those most vulnerable of this patient group.

 

A reassuring comment about dr. Storla from someone who prefers to be anonymous:

Storla is really the right man for a severe ME clinic. Very compassionate and focused on symptom relief. He’s got a background from different highly respected Hospitals/Clinics witch gives him influence and respect, someone other doc’s/Hospitals will listen to. He is never afraid to set things right with other doc’s or authorities if someone struggles to be understood. This is such great news.

 

I hope that's a typo Kalliope

 

Storla is a good choice. I’ve seen him and he gave me a very thorough evaluation and his detailed report was central to getting my disability pension without any extra trouble. He knows ME and he knows the system (the right words and phrases to use, etc.) and while he is helpful to patients he’s not lax or promoting his own pet theories, so even NAV listens to him.

 

That's great to hear @andypants !

 

@Kalliope, is there any update on the service and how things are progressing? Really interested to hear how it’s going.