News from Scandinavia

[sneyz]

No, it isn't. Quite beating that damn dead horse, it's basically nanodust at this point.

Maybe I read the part you are referring to wrong, but I tought he was referring to that better catering to the needs of patients from the get-go could have provided better outcomes. That would be more in line with the public debate that has followed the publication. ‘Facilitation’ (Nor. ‘Tilrettelegge’) is probably not the best translation either. I would argue that the semantics are a bit different in this case.

 

[Sean]

A new Norwegian study shows that very few ME/CFS patients return to the workforce after being diagnosed.

From the study abstract:

"Public transfers started increasing several years before diagnosis and stabilized at a high level after."​

Now that is interesting.

It suggests two non-exclusive, and maybe synergistic, possibilities: First is that the diagnostic process is inadequate and so is typically and substantially delayed. Second is that there is a prolonged prodromal phase, with a substantial impact.

 

[Utsikt]

It suggests two non-exclusive, and maybe synergistic, possibilities: First is that the diagnostic process is inadequate and so is typically and substantially delayed.

Average time to diagnosis to Norway was somost 8 years in one pre-covid survey from the Norwegian ME/CFS.

Second is that there is a prolonged prodromal phase, with a substantial impact.

Many report an instant onset from e.g. an infection, so it seems like this is less likely (although it can’t be excluded).

 

[Midnattsol]

Average time to diagnosis to Norway was somost 8 years in one pre-covid survey from the Norwegian ME/CFS.

With the median time being five years, so there are some pulling up that average number (me being one of them, having vague mild symptoms at the start and not diagnosed for years).

Many report an instant onset from e.g. an infection, so it seems like this is less likely (although it can’t be excluded).

Reporting an instant onset doesn't mean that the level of functioning was low enough to get disabilities at that point. It can also be "I had an infection, but never recovered and sort of pushed on until I couldn't".

 

[Utsikt]

@Midnattsol good points!

 

[rvallee]

Maybe I read the part you are referring to wrong, but I tought he was referring to that better catering to the needs of patients from the get-go could have provided better outcomes. That would be more in line with the public debate that has followed the publication. ‘Facilitation’ (Nor. ‘Tilrettelegge’) is probably not the best translation either. I would argue that the semantics are a bit different in this case.

Oh could be. The translation reads to me as "better" forms of rehabilitation, but it could be other forms of support. Which is a bit better.

However those forms of support are far too expensive, and can't be observed to make a difference. It would take decades of rigorous monitoring to see the impact of fewer permanent disability, and no health care system has the motivation or the attention span to do this, let alone being willing to spend the resources.

As we've seen, those consequences have been explicitly co-opted by governments to message that disability, which they cause with their policies, is too expensive. The very idea of disability protections is coming under attack, and would only get worse if the sums spent increased. If the proper costs were borne, instead of vaporized as externalities.

Which is exactly the freaking point! But this is falling entirely on deaf ears. The fact that this is very expensive is supposed to be a motivating factor, a pressure, in dealing with it competently. This cost is supposed to act as a clear comparison between the cost of doing nothing, and trying to solve this. Where however expensive it would be to work at solving it, it's still much cheaper than doing nothing. But all governments, all health care systems and most health care professionals are fine with throwing us all in the trash and hiding the bodies.

So those measures are sadly fantasy. They just won't ever happen, they are far too expensive, and the human cost just doesn't factor in those decisions. We've seen in recent years how many of them have completely abandoned even the pretense of making sense, being willing to label all of this as mental illness, then deploring how mental illness is over-diagnosed.

There is simply no solution to this without solving the root problem. A problem those institutions have all refused, and continue, to even acknowledge. So even proposing better financial support, work regulations, and such, just doesn't work out.

 

[Sean]

Second is that there is a prolonged prodromal phase, with a substantial impact.

Many report an instant onset from e.g. an infection, so it seems like this is less likely (although it can’t be excluded).

Certainly not suggesting it is all cases, or even most. But I don't think we should rule it out at this stage.

If anything, the evidence so far suggests to me that it is quite likely to happen in a significant number of cases. Which would also include some people who stay in that prodromal phase or state all their lives without progressing onto the full blown syndrome.

 

[Utsikt]

If anything, the evidence so far suggests to me that it is quite likely to happen in a significant number of cases. Which would also include some people who stay in that prodromal phase or state all their lives without progressing onto the full blown syndrome.

Could you give an example of what that would look like for a patient? I’m not sure I understand you properly.

 

[Midnattsol]

Certainly not suggesting it is all cases, or even most. But I don't think we should rule it out at this stage.

If anything, the evidence so far suggests to me that it is quite likely to happen in a significant number of cases. Which would also include some people who stay in that prodromal phase or state all their lives without progressing onto the full blown syndrome.

The infection could be what pushes the person into full blown ME/CFS.

Could you give an example of what that would look like for a patient? I’m not sure I understand you properly.

Well, I had been improving enough to start university. My second year I got an infection and became bedridden for two weeks and didn't really improve back to where I was. It was around this time I got my diagnosis. With milder symptoms, just taking a bit longer to recover, being told "everyone gets tired" etc. and then suddenly not functioning it could look like it was the infection that was the trigger.

 

[MittEremltage]

The Swedish government is assigning the Swedish Agency for Health and Care Services Analysis to map knowledge management in other countries for diseases or conditions "where knowledge is weak".

I am concerned about the government assignment based on their emphasis on the lack of evidence, that they base the assignment on the problematic and much criticized conclusions of the National Board of Health and Welfare, and that the assignment focuses on mapping knowledge governance in other countries, rather than other countries' knowledge about what care is needed. I also dislike that it is emphasized that it involves a selection of countries without defining what selection is being referred to. I discuss this further in two posts on the blog:

A government assignment with a peculiar approach:

Part 1:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

Part 2:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

[rvallee]

Yeah, this is a marketing campaign, a sales pitch for failed ideas.

 

[mango]

A couple of articles about mass psychogenic illness in a Swedish newspaper today.

Kjell Asplund (known from the Macchiarini scandal) is releasing a new book today, about psychological epidemics and psychogenic contagion.

ME is not mentioned in the news article. I don't know if ME is mentioned in the book.

The examples mentioned in the article are resignation syndrome ('sleeping beauty' illness, apathetic asylum-seeking children in the 2000s, here's another forum link too), the witch trials in Sweden in the late 1600s, the suspected phosgene gas leak at the Swedish Security Service headquarters in February 2024, the Coca Cola epidemic in Belgium in 1999, the tv-series linked school outbreak in Portugal 2006 (”mass social-media induced illness”), the Havana Syndrome 2016, the preaching disease ("predikosjukan") in Sweden in the late 1700s and 1800s, the Bua disease in Sweden in the 1980s, and the laughing epidemic in Tanzania in 1962.

Psykogen smitta – när du blir sjuk av andra trots att du är frisk
https://www.dn.se/insidan/psykogen-smitta-nar-du-blir-sjuk-av-andra-trots-att-du-ar-frisk/

Facts. Psychogenic infection

The term ‘mass psychogenic illness’ is used in the international trade press, but is not a diagnosis. Kjell Asplund translates it as ‘contagious psychogenic condition’.

Outdated and misleading old terms for the condition are ‘mass psychosis’ and ‘mass hysteria’.

Five criteria must be met for an outbreak to be labelled a ‘contagious psychogenic state’:

1. bodily symptoms

2. spreads like an epidemic

3. those affected believe they are under some form of external threat

4. no one dies

5. Symptoms cannot be explained by poisons, infections, etc.

There's also another article today, an interview with a person who was affected by the Bua disease in the 1980s:

Psykogen smitta: Malin drabbades av den mystiska Buasjukan
https://www.dn.se/insidan/psykogen-smitta-malin-drabbades-av-den-mystiska-buasjukan/

Psychogenic infection: Malin was struck by the mysterious Bua disease

Ten-year-old Malin's hip hurt so much that she couldn't walk.

- ‘I was hospitalised for one or two days and had to lie in bed for a long time because they thought it was an inflammation of the hip joint.

When she was discharged she was on crutches. A few days later, a few more people in the class were limping along on crutches.

Then there were more.

- Eventually, most of the girls in my class were on crutches and a couple of boys were too.

Over a period of time, more young people became ill in batches and the infection spread to other towns.

- In the beginning we were a bit scared and there was talk that we lived so close to [the nuclear power plant] Ringhals and the paper mill, if that was the reason. But I don't think I was ever really afraid, it was rather fun with the attention we got. It was a bit exciting to get help in the bamba (school canteen, editor's note) and to sit out during PE.

Although Malin Kjellberg says that it was nice to be looked after a little extra, both at home and at school, she does not want to belittle the symptoms.

- ‘People were in pain, it wasn't like it was fun to jump around on crutches. Doctors have to take symptoms seriously, and they did.

[...] The epidemic suddenly petered out,’ Malin Kjellberg recalls. There were no new cases and lots of crutches were returned to the county council.

- Even though we were in pain, I am now sure it was something psychological, especially when I got it a second time. Another thing I've been thinking about is why some girls in the class didn't get it. It's a bit weird, but then they almost became a bit of outsiders, like ‘why aren't they in pain?’. It's interesting why that little clique wasn't drawn in.
The Bua disease has not left a deep mark on Malin Kjellberg, except on one level. The expression ‘Faith pulls half the load’ has gained more weight because she has realised that the power of thought is great.

- ‘It has perhaps made me question things a little more. As an adult, I have always been very aware of how body and mind are connected.

More info about Asplund's book here:

Tankevirus: Häxbränningar, Tiktoktics och andra psykiska epidemier
https://fritanke.se/bokhandel/bocker/tankevirus/

Several of the illnesses above have also been labeled "cultural illnesses" before, and mass psychogenic illness is a very similar concept. Since ME and long covid are so often discussed in the terms of "cultural illnesses", I thought it was worth sharing this on the forum even though I don't know if Asplund includes ME in his book.

 

[mango]

There are a couple of articles on exhaustion disorder (burnout) in the news today. They do frame ME and post-covid as "cultural illnesses".

Experterna oeniga när diagnos för utmattning slopas
https://www.sydsvenskan.se/2025-03-26/experterna-oeniga-nar-diagnos-for-utmattning-slopas/

Diagnoses often include elements such as sleep problems, poor appetite, anxiety and depression. Therefore, some diagnoses can become very common for a period, while others disappear, so-called cultural diseases. What we now call exhaustion disorder, he says, may be the same as earlier diagnoses such as oral galvanism, electrical allergy, ME (chronic fatigue syndrome) or even post-covid.

More about these articles in the thread on exhaustion disorder:
https://www.s4me.info/threads/big-n...is-to-be-disappeared.43190/page-2#post-596595

 

[MittEremltage]

The National Association for ME Patients (RME) has published a call to its members to report the lack of specialist care to the Health and Social Care Inspectorate, which is involved in investigating patient safety and injuries due to care. However, they do not specify what type of care RME believes ME patients need and on what grounds it should be based.

This leaves the interpretation to the recipient and feels very risky given the problematic situation we are in (under influence of the Oslo network) along with the pseudoscientific national guidelines that the National Board of Health and Welfare issued in September 2024.

RME:s post on Facebook:
https://www.facebook.com/share/p/19QdGBJh9R/?mibextid=wwXIfr

My thoughts on this:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

[mango]

The National Association for ME Patients (RME) has published a call to its members to report the lack of specialist care to the Health and Social Care Inspectorate, which is involved in investigating patient safety and injuries due to care. However, they do not specify what type of care RME believes ME patients need and on what grounds it should be based.

This leaves the interpretation to the recipient and feels very risky given the problematic situation we are in (under influence of the Oslo network) along with the pseudoscientific national guidelines that the National Board of Health and Welfare issued in September 2024.

RME:s post on Facebook:
https://www.facebook.com/share/p/19QdGBJh9R/?mibextid=wwXIfr

My thoughts on this:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

Be careful what you wish for, RME... You insisted on clinical guidelines, and you got them -- only they are arguably way worse than not having any guidelines at all. And still you want to keep on pushing in the same direction? Unbelievable Very very reckless

Thank you so much @MittEremltage for highlighting this, it's immensely important that everybody is aware of the risks.

 

[Utsikt]

The National Association for ME Patients (RME) has published a call to its members to report the lack of specialist care to the Health and Social Care Inspectorate, which is involved in investigating patient safety and injuries due to care. However, they do not specify what type of care RME believes ME patients need and on what grounds it should be based.

This leaves the interpretation to the recipient and feels very risky given the problematic situation we are in (under influence of the Oslo network) along with the pseudoscientific national guidelines that the National Board of Health and Welfare issued in September 2024.

RME:s post on Facebook:
https://www.facebook.com/share/p/19QdGBJh9R/?mibextid=wwXIfr

My thoughts on this:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

More than 7000 patients in Norway have been requesting for years to dismantle the National Advisory Unit on ME/CFS because of their BPS approach.

In an ideal world, it should be enough to just ask for help. The patients shouldn’t have to specify what kind of help. But it’s incredibly naive of RME to act like we live in a utopia. We live in a dystopia.

 

[MittEremltage]

I have tried to articulate what I see happening on a broader scale right now in Sweden. I'm not sure if it comes across in the translation, as much depends on the language and the words that are used. Implications. But maybe?

”It feels like we have suddenly found ourselves in the middle of some kind of normalization process around the concept of cultural illness.”

Autotranslated blog:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

 

[rvallee]

Well, this is a big load of bad. The irony:

Is it an epidemic of psychogenic contagion that we are seeing in the media now? Or is it just a completely normal political influence campaign? Propaganda?

Being that the descriptions they are giving about social contagion are a likely good explanation... for them. They are repeating and amplifying memes, which obviously do not cause symptoms of illness, not even the perception of it, but rather distort thinking and judgment, to the point where some people engage in malfeasance with the absolute certainty that they are doing good.

It's especially absurd how facts simply don't matter because memes have taken over. Or, I guess they always did rule. We have just been through a very simple process:

1. A pandemic occurs, which ends up killing millions
2. The illness it causes also leaves behind chronic illness and this was noted, by the sufferers (because medicine was indifferent)
3. The growth of this illness leads to warnings about a mass disabling event
4. The mass disabling event is easy to see in a significant increase in chronic illness and sick leave
5. Propaganda machine goes into overdrive to cover up governments' enthusiastic role in the mass disabling event

Talk about social contagion of absurd memes leading to mass illness, just a very different way than how it's being falsely portrayed. The sick are not those suffering from the memes, it's the ones who are supposed to take care of the sick, who in the process make more people even sicker.

The pretense of caring is so blatantly fake. This is all very similar to a very similar obsession with some 'awakened' virus of the mind that is destroying civilization, unless we return to the days where kings ruled nations, and men ruled families, both with an iron fist. This is the same concept of "cultural illness". It also makes no sense, in fact it's blatantly delusional.

How great that medical experts are just as gullible and manipulative as a reactionary countercultural revolution. It's like I'm seeing double here.

 

[Utsikt]

The Norwegian health minister and other government/healthcare people met with the Norwegian ME Association, ME Parents (another association), the Norwegian Covid Association and Recovery Norway on the 1st of April to talk about fatigue disorders (I know it’s an unfortunate angle but that’s how they’ve decided to do things).

Auto translate:

Best possible treatment and follow-up for patients with fatigue disorders

News | Date: 02.04.2025 | Ministry of Health and Care Services

Minister of Health and Care Services Jan Christan Vestre met with four patient organizations on Tuesday, April 1, to discuss treatment options for fatigue disorders.

– Patient organizations are important partners for the health trusts and for the directorate when it comes to developing good health services. That is why I have invited them to discuss and hear their views on important studies on fatigue disorders, and the work ahead, says Minister of Health and Care Services Jan Christan Vestre.
The term fatigue disorders includes, among others, ME (myalgic encephalopathy), CFS (Chronic Fatigue Syndrome) and long covid. The meeting was attended by the patient associations Norwegian Covid Association, Norwegian ME Association, ME Parents and Recovery Norway. The Directorate of Health and the regional health authorities also participated. The Directorate of Health is responsible for the national guide and national patient course and the health authorities are responsible for reviewing the national competence service.

– We must ensure a good offer for patients with fatigue disorders. Several studies show that we need more knowledge and experience and a better adapted treatment offer, this also applies to conditions with long covid. We discussed this at the meeting with the patient organizations today, says Vestre.

The Norwegian Directorate of Health, in collaboration with professionals and patient organizations, has investigated and assessed what needs to be in place to have a national patient course for long-term fatigue. Work is underway to revise the national guide for CFS/ME. In addition, an expert group has submitted a summary of a Nordic research collaboration on COVID-19 late effects.

– This is a complex topic with many different perspectives. We will summarize the various studies and viewpoints that emerged in today's meeting, and decide how this will be followed up further. The goal is to provide patients with fatigue disorders with the best possible treatment and follow-up, concludes Vestre.

The three real patient organisations were pretty happy about how it went. Let’s hope it leads to real change.

https://www.regjeringen.no/no/aktue...osx7PV0BD2hoHgpqKA_aem_iZt6t1Ud-r-zCKfGqwwt_A

 

[Sean]

"fatigue disorders"