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

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Dolphin

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Research Article

Specialised care for severely affected ME/CFS patients​

Ola Didrik Saugstad
,
Mari Gamme Sollie
,
Harald Andre Torp
&
Dag Gundersen Storla
Received 24 Feb 2025, Accepted 19 Sep 2025, Published online: 01 Oct 2025


ABSTRACT

Introduction​

A specialised care unit for severely and very severely ill ME/CFS patients opened in 2021. The results from the first 3 years are reported.

Methods​

People with ME/CFS who were diagnosed according to the Canadian Consensus Criteria, who are aged 18 or above with severe or very severe ME/CFS according to the UK NICE guidelines, are eligible to stay at Røysumtunet. The study design is a retrospective review of medical records.

Results​

Between June 2021 and June 2024, 24 ME/CFS patients, 20 women and 4 men with a confirmed diagnosis of ME, were admitted to the unit for stays of at least 3 months. Seventeen were very severely affected and 7 were severely affected. Ages ranged from 18 to 68 years, with mean (SD) 37.5 (12.8) years. Seven patients showed significant improvement (p < 0.01), and five others showed some improvement. In total 50% improved (p < 0.01). Patients who improved were borderline significantly younger than those who did not, with a mean age of 30.3 (SD 12.6) years compared to 39.8 (SD 11.8) years (p = 0.06). The mean duration of disease was 2.3 (1.3) years for those who improved versus 6.7 (3.9) years for those who did not improve (p < 0.05).

Conclusion​

This is the first report of a specialised care unit for the most severely ill ME/CFS patients. Fifty per cent of patients showed significant or partial improvement. The mechanisms behind these improvements are discussed but require further exploration in future studies.
KEYWORDS:

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I’ve been waiting for this one.

There is a lot to learn from the practical setup and how to be able to provide inpatient care for the more severe patients, but Storla has a questionable approach to treatments:

Supportive therapy​

No curative therapy exists. Upon admission, each patient is offered a four-step supportive therapy programme with a two-month interval between each step. The effect of each step is evaluated individually; if a step is deemed to contribute positively to the patient’s health, it is continued, and the next step is introduced: if not, it is discontinued. Consequently, after completing the evaluation of all four steps, a patient may end up utilising anywhere from one to all four steps concurrently:
  1. High-dose thiamine and oral rehydration solution (1 L, twice a week).
  2. NADH, Coenzyme Q10, and vitamin B12.
  3. Low-dose naltrexone.
  4. Low-dose aripiprazole.
The attending doctor developed this programme based on his own extensive clinical experience. Many of the patients were already applying parts of this programme before admission. It takes 6 months to implement the full programme.
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For the purpose of evaluating the stay (not just the programme that only some wanted to try), they defined moving from one severity category to another at significant improvement/worsening.

A majority of the patients were very severe:
Of the 24 patients, 17 were classified as very severely affected (2 of 4 men and 15 of 20 women) and 7 as severely affected (2 men and 5 women). Duration of stay ranged from 3 to 36 months, with a mean of 12.3 months (SD 8.6).
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7/31 improved by one degree or more:
When analysing all 31 patients, including the 7 who had been excluded, 7 out of 31 (23%) improved by one level or more (p < 0.01).
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The people that improved had been sick for a significantly shorter period than the ones that didn’t improve, and there was a trend towards the improvers being younger:
Duration of disease at admission was not always known. However, for those who reported it (N = 20) the mean duration (SD) was 6.1 (3.8) years, ranging from 1 to 15 years. For those who improved by one level or more (N = 5), the mean (SD) duration was 2.3 (1.3) years, compared to 6.7 (3.9) years (N = 15) for those who did not improve (p < 0.05).
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The age of those who improved by one or two levels did not differ significantly, but showed a borderline trend: mean age 30.2 (SD12.5), compared to 41.4 (SD12.1) years for those who did not improve (p = 0.06).
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In total, roughly half of the patients saw some degree of improvement:
Additionally, 5 out of 24 may have experienced some improvement without a change in severity level. Thus, about 1 in 3–4 patients improved significantly, and 1 in 5 showed some improvement. In total, half of the patients experienced either significant or some improvement during their stay.
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They emphasise repeatedly that there is no way of knowing if the supplements had any effect (they don’t call them medications even though some clearly are).

Concerningly, they did not properly monitor the side effects of the supplements and medications.

Some patients were not happy with their stay for various reasons. I’m glad this is reported transparently:
Complaints included a shortage of staff, some staff lacking the necessary training to meet patient needs, and incomplete sound isolation of the rooms. Additionally, several patients had co-morbidities that complicated both their care and the interpretation of these results.
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The key takeaway is nevertheless that it’s possible to provide care in institutions for the very severe. That is a very important point for advocacy puposes:
These results indicate that it may be beneficial for severely and very severely affected ME/CFS patients to be cared for in an environment where they are met with respect, understanding with the aim to reduce PEM as much as possible.

We believe that, in Norway and likely elsewhere, there is a great need for more facilitated care services like this where ME/CFS patients are cared for by health care professionals, feeling secure and respected with individually adapted care. Such institutions may pave the way for a better quality of life and a more hopeful future for the most severely affected ME/CFS patients.
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Financial constraints and reluctance from local authorities to cover the costs of stays represent significant threats to the sustainability of this initiative.
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A stay at Røysumtunet is estimated to cost about 150k NOK a month. That’s £11.2k, €12.9k or $15k. As far as I can see, it’s about the same as other nursing homes.

So money shouldn’t be an issue, pwME/CFS are no more expensive than other patients that need full time care.
 
When I read something like this, I just want to know what a control would look like. I hope there’s a waitlist for this centre, and I hope Saugstad and colleagues will assess those on the waitlist at baseline and after a year to get some idea of how a control group would do.

While there's no truly comparable control data around that I'm aware of, we can look the PACE trial’s specialist medical care arm data. There were 31 patients with a baseline SF36 physical function score of 0-29 and 1 year follow-up. Van Campen et al. 2020’s data suggests this corresponds to severe ME/CFS on International Consensus Criteria. Very severe ME/CFS would not be represented in either study, so we’re just looking at severe, not very severe.

[Edited as table initially pasted in a garbled way. Here's a printscreen instead.]

Change in severity among severe patients in PACE trial’s SMC arm
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16/31 (52%) improved to moderate or mild.
20/31 (65%) improved by 10 or more points on the SF36 PF.

There’s a bit of shuffling of who’s at the bottom:
  • Of the three with baseline SF36PF 0-5, all three had SF36PF scores 20-30 at 1 year.
  • Three others who had baseline SF36PF 20-25 deteriorated to the 0-5 range at 1 year.

Saugstad’s cohort was more severe. So we’d expect more regression to the mean than in the PACE SMC cohort. But improving to moderate or higher would be more of a stretch.

Rekeland et al. 2022’s cohort included 8 people with baseline SF36PF of 0-29. They didn’t do any treatment, just got assessed over 6 months and wore an actometer. Of those 8, 3 had the exact same SF36PF at 6 months, 3 improved by 5 points and 2 improved by 10-15 points. That meant that 4/8 got into the moderate category, but 3 of the 4 just scraped in with small changes.

So while it’s hard to tell without a proper control group, I would be cautious about whether this centre offers treatment that helps.

But I greatly appreciate that they aimed high by choosing a change in severity as their outcome measure rather than piffling about with fatigue scores. The downside of that is that deterioration becomes invisible. And I’m glad that they respect people’s light and noise sensitivities, and feed them.

The institution has a kitchen with high competence on providing a variety of diets according to the patient’s wishes and needs. Tube feeding or intravenous nutrition is available if required.
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I’d go for the tube feeding, if I needed it, and respite for my carers, and try to wriggle out of this bit, because of a lack of evidence, and because the ones I have experienced made me either worse or made no difference, but cost money:

  1. High-dose thiamine and oral rehydration solution (1 L, twice a week).
  2. NADH, Coenzyme Q10, and vitamin B12.
  3. Low-dose naltrexone.
  4. Low-dose aripiprazole.
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Evergreen said:
So while it’s hard to tell without a proper control group, I would be cautious about whether this centre offers treatment that helps.
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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.
 
It's good that they have learned from the experience, and will improve, but clearly staff were not expecting the very severe patients to be as ill as they are:
Our ambition at the start of the project was to review the severity of ME of each patient on a regular basis. It was, however, not easy to fill in for instance SF-36 for these extremely ill patients, some of them could hardly talk, often they were only able to whisper a few words. To register routinely heart rate, heart rate variability, sleep and sleep states, steps, and calories by wearing a smart watch was also difficult, due to the fact that most of the patients did not tolerate a watch and a band around their wrist. For similar reasons we were not able to systematically monitor blood lactate levels, for instance when patients experienced PEM.
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That does mean that these in-patient stays are peppered with requests and interruptions that very severe patients are not able for. (I'm severe, and being in hospital is awful for the same reason.) So if I were very severe, I would not go here unless I needed tube-feeding or lost my carers.
 
Utsikt said:
A stay at Røysumtunet is estimated to cost about 150k NOK a month. That’s £11.2k, €12.9k or $15k. As far as I can see, it’s about the same as other nursing homes.

So money shouldn’t be an issue, pwME/CFS are no more expensive than other patients that need full time care.
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I'm not sure I understand. Are you referring to the ideal world where a unit like this would be paid for through regular healthcare? As it's private I can understand money is an issue for both the individual and any municipalities that might pay for other health care for their inhabitants (and for the municipalities there is the additional push for everyone to stay at home as much as possible).

On another note re money: if we want a similar option through the official health care system, it is paramount it is designet into the somatic health care. If it is under mental health people will lose for example disability payments after three months stay. Hopefully the rule that discriminate against hospital stays in somatic vs psychiatric care units in Norway disappear, but as far as I know it is still in effect.
 
Evergreen said:
It's good that they have learned from the experience, and will improve, but clearly staff were not expecting the very severe patients to be as ill as they are:

That does mean that these in-patient stays are peppered with requests and interruptions that very severe patients are not able for. (I'm severe, and being in hospital is awful for the same reason.) So if I were very severe, I would not go here unless I needed tube-feeding or lost my carers.
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Lack of nutrition care has been one of the things they have been criticized for. I'm not sure what type of feeding people have said have been denied, as when someone writes "I was not allowed to use my tube feeding" it's difficult to know if they are referring to a tube through the nose into the stomach/jejunum, or if it is intravenous.
 
Midnattsol said:
Lack of nutrition care has been one of the things they have been criticized for. I'm not sure what type of feeding people have said have been denied, as when someone writes "I was not allowed to use my tube feeding" it's difficult to know if they are referring to a tube through the nose into the stomach/jejunum, or if it is intravenous.
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This is a shame, as I would have thought managing feeding and non oral feeding is tge biggest justification for such a service.
 
Midnattsol said:
Are you referring to the ideal world where a unit like this would be paid for through regular healthcare?
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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.
Midnattsol said:
On another note re money: if we want a similar option through the official health care system, it is paramount it is designet into the somatic health care.
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Couldn’t agree more.
 
Midnattsol said:
Lack of nutrition care has been one of the things they have been criticized for. I'm not sure what type of feeding people have said have been denied, as when someone writes "I was not allowed to use my tube feeding" it's difficult to know if they are referring to a tube through the nose into the stomach/jejunum, or if it is intravenous.
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Oh no. My comment about tube feeding was based on this promising line in the paper:
The institution has a kitchen with high competence on providing a variety of diets according to the patient’s wishes and needs. Tube feeding or intravenous nutrition is available if required.
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and the mention of "dietitians...as required".


Maybe the judgement of when assistance is required is off - either through the physician not referring to the dietitian enough, or the physician and/or dietitian not agreeing on initiating tube feeding early enough?
 
Honestly bar the physians have a bit of a supplement tinkering thing, this place sounds pretty good. Obviously it’s not perfect, but for lots of pwME who can’t get the care they need, experience abuse etc at home, or become homeless, this place sounds like a good option.

Edit: My main concern would definitely be sound. Like even tiny amounts give me lots of PEM. And the staff being able to deal with the fact I’m non-verbal (can’t speak or I get PEM).
 
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Midnattsol said:
On another note re money: if we want a similar option through the official health care system, it is paramount it is designet into the somatic health care. If it is under mental health people will lose for example disability payments after three months stay. Hopefully the rule that discriminate against hospital stays in somatic vs psychiatric care units in Norway disappear, but as far as I know it is still in effect.
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I know this is a sidenote but this is interesting context as I'd wondered why the strategic focus on the bps post-Nice towards places like Norway and eg setting up the Oslo Chronic Fatigue Consortium ( https://meassociation.org.uk/2023/0...nsortium-new-hope-is-more-unhelpful-nonsense/ )

I'm guessing the name is a rebrand as the website I found for them has a url of 'oslo chronic fatigue network' https://www.oslonetwork.no/news and have not managed to find the date is was actually set up
 
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? Were they assessed at home before they left and again after they returned home? Could some have arrived at the centre crashed and any apparent “improvement” was simply a slow return to their pre-travel state, only for them to crash again after the return travel? (You may have guessed it, I’ve had bad experiences with travel)

To be sure there are undoubtedly pwME whose home and care situation is such that a good care centre adapted to their needs would be the least bad option, travel crashes or not, and I’m all for such places being available, especially if they can be provided locally and even more so if they can provide competent management of feeding problems

But for others surely establishing (much) better home services would be more appropriate. Though that would require politicians to understand that the concept of care in the home they are so fond of under the misapprehension that it’s cheap actually needs decent funding, too, if it is to be done well
 
Ravn said:
But for others surely establishing (much) better home services would be more appropriate. Though that would require politicians to understand that the concept of care in the home they are so fond of under the misapprehension that it’s cheap actually needs decent funding, too, if it is to be done well
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So important for the very severe.

I suspect, at least in the initial setting up, as with most health care for ME/CFS, there was little understanding of how severe very severe ME/CFS can be.
 
Ravn said:
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?
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I know some are not local. I’m guessing transport was anything from ambulances to cars.
Ravn said:
Were they assessed at home before they left and again after they returned home? Could some have arrived at the centre crashed and any apparent “improvement” was simply a slow return to their pre-travel state, only for them to crash again after the return travel? (You may have guessed it, I’ve had bad experiences with travel)
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That’s a very good point. I’m not sure what they did.
Ravn said:
But for others surely establishing (much) better home services would be more appropriate.
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Absolutely.
 
bobbler said:
I know this is a sidenote but this is interesting context as I'd wondered why the strategic focus on the bps post-Nice towards places like Norway and eg setting up the Oslo Chronic Fatigue Consortium ( https://meassociation.org.uk/2023/0...nsortium-new-hope-is-more-unhelpful-nonsense/ )

I'm guessing the name is a rebrand as the website I found for them has a url of 'oslo chronic fatigue network' https://www.oslonetwork.no/news and have not managed to find the date is was actually set up
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Dec 2023, according to who.is
 
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