Specialised care for severely affected ME/CFS patients, 2025, Saugstad

[rvallee]

I find it very unlikely that the centre produces any benefits for the patients other than proper basic care and avoiding PEM as much as possible.

I’ve spoken to Storla and to many others that have spoken to him and even been at the centre, and even though he acknowledges that there is no way of knowing if X will work for anyone in particular, he seems to believe that it does help some. I was not convinced by his arguments, it seem to be the same logical fallacy as saying that Ritux worked for some even though the placebo saline performed just as well.

Can't really see how it should be framed any other way. Palliative care is not expected to produce meaningful benefits, reducing suffering is a benefit in itself. If only reducing suffering was perceived as a benefit in itself by those with the power to do it, but they clearly only see us returning to being in the work force, something they refuse to actually improve, as being worth the trouble.

This is what convalescence was about, before it somehow became a bad idea. Sometimes reducing suffering is the best you can do. If only they could work on the best they can do, instead of putting everything in the worst.

 

[Midnattsol]

This is a shame, as I would have thought managing feeding and non oral feeding is tge biggest justification for such a service.

It might be some special reason for why some have been critical of how feeding have been handled, and maybe there has been changes in how they do it, I don't know.

 

[Midnattsol]

My basic understanding that might be wrong: Municipalities are required by law to provide the necessary healthcare services to its population, including paying for services from private actors if they can’t provide it on their own. A nursing home spot costs about the same as a spot at Røysumtunet, so there should be no reason to deny care for appropriate patients based on the cost alone.

For reference, there are 3-400 people with active Huntington’s in Norway, and 40-50 dedicated spots for HD throughout Norway. Patients are actively encouraged by the HCPs to move there sooner rather than later in the more advanced stages.

Calculation of cost in health care is not always straight forward. Cost for having someone at home likely doesn't take into account that a carer might work fewer hours as a result of the care given not being good enough. And while a spot at a nursing home can cost as much as Røysumtunet, sending someone out of the municipality is still a different thing. When the evaluation of "free choice" of treatment place was done a few years ago, they found that most patients didn't travel far for care (I think this might be different for pwME as there often are no good options close to home, but we also see this with other groups. Some choose no treatment rather than go somewhere "too far away").

The stigma and minsinformation about the needs of pwME definitely plays a part in the lack-of-care we see happening. It's so hard when both NAV/welfare and disability and the healthcare system both don't know what they're on about.

The paper doesn’t report on how travel to and from the centre affected the patients. Were they all drawn from a relatively local area and didn’t have to travel far?

I know some are not local. I’m guessing transport was anything from ambulances to cars.

There are patients that have needed to be flown in from other parts of the country.

 

[Utsikt]

Calculation of cost in health care is not always straight forward. Cost for having someone at home likely doesn't take into account that a carer might work fewer hours as a result of the care given not being good enough. And while a spot at a nursing home can cost as much as Røysumtunet, sending someone out of the municipality is still a different thing.

Calculating the average cost per bed is quite straight forward. And the transport of the patient is a one-time cost. In Northern Norway they charge ~200 NOK/km for ambulances for foreign insurance purposes, so ambulance transport for a long term stay wouldn’t be prohibitively expensive compared to the total cost of the stay.

I understand that in reality, sending someone out of the municipality is a different process from putting them in some local facility. But if Røysumtunet is the only facility that can cover their basic medical needs, that process shouldn’t be a barrier. People are moved to the larger hospitals all the time. I can’t see how this is any different in principle.

 

[Midnattsol]

Calculating the average cost per bed is quite straight forward. And the transport of the patient is a one-time cost. In Northern Norway they charge ~200 NOK/km for ambulances for foreign insurance purposes, so ambulance transport for a long term stay wouldn’t be prohibitively expensive compared to the total cost of the stay.

The cost of tourists in Northern Norway who get sick is not without its own discussions for poor municipalities though.

This pwME from Northern Norway was sent in an ambulance plane: https://www.kp.no/me-rammede-kristi...lenger-oppholdet-pa-roysumtunet/s/25-168-7532

I understand that in reality, sending someone out of the municipality is a different process from putting them in some local facility. But if Røysumtunet is the only facility that can cover their basic medical needs, that process shouldn’t be a barrier. People are moved to the larger hospitals all the time. I can’t see how this is any different in principle.

II agree it shouldn't be a barrier, but some of the reason people are denied a stay is that municipalities argue they can provide good enough care - and as we have no lack of professionals saying not to cater to things like sound sensitivities it's easy enough to back up the bad care "with science".

For me personally that people are "moved all the time" is a dangerous argument. Frail patients risk being moved too often, as we already see with for example elderly patients that, to avoid incurring a higher price of the stay, are sent from hospital to their (nursing) home only to be sent back again.

 

[Utsikt]

The cost of tourists in Northern Norway who get sick is not without its own discussions for poor municipalities though.

The costs they operate with should not be lower than the true cost. So a 50km trip with an ambulance should cost the municipality at most 10k.

This pwME from Northern Norway was sent in an ambulance plane: https://www.kp.no/me-rammede-kristi...lenger-oppholdet-pa-roysumtunet/s/25-168-7532

Didn’t know that, thanks for sharing!

II agree it shouldn't be a barrier, but some of the reason people are denied a stay is that municipalities argue they can provide good enough care - and as we have no lack of professionals saying not to cater to things like sound sensitivities it's easy enough to back up the bad care "with science".

I understand that these things are barriers in practice, but they are not barriers on paper. The laws don’t allow for cherry picking of clearly biased experts even though that happens all the time. It requires that the healtcare is «forsvarlig», and there is no way to fit the BPS arguments into that category if you actually scrutinise the claims.

Kravet i helse- og omsorgstjenesteloven om at tjenestene skal være forsvarlige innebærer også at dersom en bestemt type tjeneste, for eksempel institusjonsplass, er eneste alternativ for å kunne yte et forsvarlig tilbud i det konkrete tilfellet, vil vedkommende pasient eller bruker ha et rettskrav på den bestemte tjenesten.

§ 2-1 Rett til nødvendig hjelp fra kommunens helse- og omsorgstjeneste

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For me personally that people are "moved all the time" is a dangerous argument. Frail patients risk being moved too often, as we already see with for example elderly patients that, to avoid incurring a higher price of the stay, are sent from hospital to their (nursing) home only to be sent back again.

That’s a valid concern. I was mostly thinking about how patients are transported across the country all the time if the adequate care can only be given at certain locations. So transport costs by themselves are not an argument against letting people stay at an institution outside the municipality.