Norway: Røysumtunet, a centre for severe ME patients

Simone said:
@Kalliope, is there any update on the service and how things are progressing? Really interested to hear how it’s going.
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That's a great question and it would have been nice to hear an update from Røysumtunet.

I have not heard anything, other than what the general secretary of the Norwegian ME Association wrote in his message on the international awareness day for severe ME:

- Late last year, the ME Association entered a collaboration with Røysumtunet on a care offer for severely ill ME patients. Both parties have a biomedical understanding of the disease. Now it has started up. The first patients are now in place and we hope it will work out over time. It will probably take some time before everything has settled, but we hope that this can influence both the public sector and other institutions to facilitate such offers.

12 places at Røysumtunet is a bit scarce in relation to need, but it is a start of a somewhat better offer for seriously ME patients in this country.

(google translated)
Source
 
The latest episode of ME-foreningen's podcast is about Røysumtunet.

https://www.me-foreningen.no/mestring/leve-med-me-me-foreningens-podcast/
Auto-translate said:
Episode 7: Røysumtunet

The very sickest ME patients live with enormous exhaustion and pain. In addition, they experience loss of dreams, future and relationships. At Røysumtunet at Granavollen, a department has been established with services for the sickest patients. Here the focus is on medical follow-up, information and new hope. Barnelege and ME expert Ola Didrik Saugstad sits on the ME Association's medical council. He has been central to the development of ME services at Røysumtunet. In this episode, he explains how the offer at Røysumtunet helps to create a better everyday life for the hardest hit ME patients.
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Dag Gundersen Storla, a doctor from Røysumtunet, who has many years of experience with ME and also runs a private clinic in Bærum Municipality, has today an opinion piece in the local newspaper Budstikka.

He says that information about this institution now accepting severe ME patients has been sent to all GPs and municipalities in the country. The institution is run as a non-profit, and several municipalities have bought their services. They have 12 places for ME patients, and more applications than beds.

But he is disappointed that Bærum Municipality doesn't want to make use of the institution. They have even criticised Røysumtunet for their marketing. They were invited for a meeting to learn more about Røysumtunet, but declined. In other words the severe ME patients in Bærum Municipality is cut off from Røysumtunet's services.

He also says that they're testing different combinations of medical treatments. "The results so far are very promising, several patients have already been discharged with considerable improvement. Nearly everyone who has come to us, are better than when they arrived".

Bærum kommune og tilbud til alvorlig ME-syke
google translation Bærum Municipality and services for patients with severe ME

Must say I'm quite curious on the drugs they're testing out. I think there have been plans for a study as well, and hope they're able to do that.
 
It worries me that they are already claiming success with drug treatments if they are not doing them as proper clinical trials. It's all too easy to attribute fluctuations or short term placebo effect to treatment. Without proper research, this is no better than the claims made about LP.
 
I agree. It also wouldn't surprise me that if they have succeeded in providing proper care for severe ME patients, no noise, help with eating, few carers who are also knowledgable about ME and pay attention to reduce stimuli, help with pain and sleep, nothing for the patient to have to administer and plan and mobilise for, could in itself help with stabilising the condition and even turn things around for some.
 
Kalliope said:
I agree. It also wouldn't surprise me that if they have succeeded in providing proper care for severe ME patients, no noise, help with eating, few carers who are also knowledgable about ME and pay attention to reduce stimuli, help with pain and sleep, nothing for the patient to have to administer and plan and mobilise for, could in itself help with stabilising the condition and even turn things around for some.
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This. I was discussing this somewhere else re covid rehab, that pwLC might simply be able to work out more at the rehab centre than at home since they didn't have to use energy on a lot of tasks such as shopping, cooking and cleaning etc.
 
Midnattsol said:
This. I was discussing this somewhere else re covid rehab, that pwLC might simply be able to work out more at the rehab centre than at home since they didn't have to use energy on a lot of tasks such as shopping, cooking and cleaning etc.
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Not just physical stuff I can manage to read books one short chapter at a time if I go somewhere else where I don’t have to do those chores. No way I can do that at home.
 
I had a horrendous time in a neurology ward. It was when I was still naive and thought I was there so they could see how bad I was, not get exercise therapy and a psychologist who kept asking why I did not go to work (!!!). No one was interested in what I felt were my symptoms and what made me unable to do things.

Anyway, I was upset, angry and frustrated but after a week I began to feel better. Nothing to do between sessions except lie on a bed reading, meals at regular intervals with no cooking, no getting the kids to school, no washing clothes, no stopping quarrels. As if walking for 10 minutes between some bars (with a rest at each end) could compare with the exercise I already got.

It also confirmed what I already thought. I could walk the bars no problem but they made me walk to the toilets and I collapsed after a few times. Short bits fine, long walk disaster.

There was so much information there for them if they had been willing to look.

I hope this centre is better.
 
This week TV2 has covered a couple where the wife Katrine is suffering from severe ME. They and the GP believe a long term stay at Røysumtunet would be beneficial to Katrine, but their municipality refuses to cover the expenses. The husband Gøran is fundraising in order to help his wife. He's a musician and friends and colleagues have contributed with a concert in order to help with the fundraising.
The goal is 1 million NOK for a 6 months stay. This will also allow Gøran to start touring again as a musician, as he now is a full time carer for his wife.

The municipality has offered a two week's stay at a rehabilitation clinic instead of Røysumtunet. The GP advices against this and says it might lead to further deterioration.

TV2: Kommunen nekter å betale for det legen kaller "deres eneste håp"
google translation: The municipality refuses to pay for what the doctor calls "their only hope"

In a new article from today politicians from several parties react to the news story. Politician Hoksrud participated on the concert and says there's no doubt that the competence concerning ME is at Røysumtunet.

The leader of the Health-and-Care-committee in the municipality says she thinks the case is challenging because they need to make a decision based on the national guideline for ME from 2014. She say's it's difficult to assess whether or not Katrine's rights have been fulfilled when those rights are based on a very outdated guideline.

MP Marian Hussein (who this year raised the situation for ME patients for the Parliament) says we need a revised guideline as soon as possible and that it has to better take into consideration the needs from patients and their families.

TV2: Politikere raser mot kommunens ME-avslag: - Arrogant
google translation: Politicians rage against the municipality's ME rejection: - Arrogant
 
Professor Ola D. Saugstad has been interviewed about Røysumunet:

TV2: Professor: - Veldig lovende resultater for ME-syke
google translation: Professor: - Very promising results for ME sufferers

quotes:

One year after this first national offer for severe ME patients was established, you can see that the stay there is good for them, says Saugstad.

- We have had several residents who have become healthier and have been able to go home, so we feel that we are on the right track at Røysumtunet, Saugstad says optimistically.

...

For the employees, it is very important to know what triggers symptoms, how different sensory impressions affect the individual.

...

- I have worked as a neonatologist for many years and seen many very sick patients, and I must say that the sickest ME patients are often sicker than what you see in intensive care units.

...

During the stay at Røysumtunet, the focus is on the individual's "energy account", and the rule is that you should limit yourself to what you think you can manage, says the ME expert.

- Part of the secret is that they have to learn from themselves and their surroundings how much they can tolerate.

...

It is crucial that ME patients are taken at their word and that the individual is taken into account, he emphasizes.
 
TV2 has an article today about Kristine Kornelia Paulsen and her stay at Røysumtunet. The article describes her development from mono to severe ME, and that she has improved a bit at Røysumtunet.

She is by the way also an awesome graphic designer who has made some terrific illustrations about ME in Norwegian and English. Some are shared on Instagram illustrating_me

Kristine (29) er sengeliggande 23 timar i døgnet
google translation: Kristine (29) is bedridden 23 hours a day
 
So happy for her to be able to be a bit up and about!

Not to go on about the nutrition situation for patients in (rural) Norway, but I'm glad they mentioned the malnourishment/undernutrition part. I hope she was on the way to becoming well-nourished when she came to Røysumtunet, not still malnourished after she got the tube inserted for feeding prior to going.
 
Mithriel said:
I had a horrendous time in a neurology ward. It was when I was still naive and thought I was there so they could see how bad I was, not get exercise therapy and a psychologist who kept asking why I did not go to work (!!!). No one was interested in what I felt were my symptoms and what made me unable to do things.

Anyway, I was upset, angry and frustrated but after a week I began to feel better. Nothing to do between sessions except lie on a bed reading, meals at regular intervals with no cooking, no getting the kids to school, no washing clothes, no stopping quarrels. As if walking for 10 minutes between some bars (with a rest at each end) could compare with the exercise I already got.

It also confirmed what I already thought. I could walk the bars no problem but they made me walk to the toilets and I collapsed after a few times. Short bits fine, long walk disaster.

There was so much information there for them if they had been willing to look.

I hope this centre is better.
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This seems quite similar to the inpatient “rehab” programmes you see these days for FND. Walking a few steps further between bars is interpreted as treatment success. In actuality, a reduction in overall physical activity took place if you consider that you don’t have to do any chores or food shopping whilst an inpatient etc. It’s sooo deceptive.
 
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