News from Scandinavia

[Kalliope]

The Danish newspaper B.T. shares the story of ME sufferer Birgitte who hasn't showered since April and is missing out on her life. It also mentions that ME is defined as a functional disorder in Denmark and why this is harmful for the patient group.

Towards the end the article mentions a fundraiser Birgitte is having in order to get treatment abroad, but it doesn't say anything about what kind of treatment she wants to try.

B.T. Alvorlig syge Birgitte har ikke været i bad siden april: 'Mit største juleønske er at få den rette behandling'
google translation: Severely ill Birgitte has not has a shower since April: 'My biggest wish for Christmas is to get the right treatment'

 

[mango]

A Finnish news article, published today:

Niko, 32, elää sängyn omana, käy vessassakin vain kolmesti viikossa: "Minut nähdään eläkeyhtiössäni täysin työkykyisenä"
https://www.mtvuutiset.fi/artikkeli...n-elakeyhtiossani-taysin-tyokykyisena/8840738

Niko, 32, lives in his bed, goes to the toilet only three times a week: 'My pension company sees me as fully fit for work'

32-year-old Niko Suvisto suffers from chronic fatigue syndrome (ME/CFS). At its worst, the disease can put you in bed full-time, as it has done for Niko. To make matters worse, the condition is not easily diagnosed or recognised, which means that the right kind of help or support is not always available.

"Chronic fatigue syndrome (ME/CFS) is a relatively rare condition with the core symptom of severe fatigue and a general decline in well-being after very little mental, physical or emotional exertion."

This is how chronic fatigue syndrome is described in the Duodecim Health Library.

The symptoms also match those of Niko Suvisto, 32. He currently lives in bed, except for three weekly visits to the toilet. The pain was worse a year ago, but at some point before that it was better.

Back in 2015, Niko was recovering from burnout and overweight. The big changes of the previous year, such as a three-shift summer job and a move to a new college town, combined with strength training, had been too much. [...]

 

[mango]

Has this been shared already? I've listened to about one third of it now, and I think it's really good

Norges Myalgisk Encefalopati Forening: HOLD UT - foredrag med psykologspesialist Frøydis Lilledalen

 

[Kalliope]

Thank you for sharing @mango
Haven't watched it yet, but have seen it gets a lot of praise

 

[Midnattsol]

Great article on increase in fatigue consultations in Norway following covid (if we ignore the lone person saying we know little about long term effects of viral infections):
Alarming: Record numbers of GP consultations about fatigue (the Google translated title in the article is wrong, it's not about doctors with exhaustion though the increased numbers of sick leave in our health care system make it seem that doctors and nurses are not ok)

There are also record levels of snow and very cold in the southern part of Norway, and many people have on and off lost electricity. I hope everyone who are dependent on help from others or who struggle with temperature are fine.

 

[mango]

Not ME. For what it's worth:

An essay about placebo research, Ted Kaptchuk and more, written by a medical anthropologist. Today, in the very large Swedish newspaper DN.se.

Lisbeth Sachs: Inbillningens kraft tar plats i den medicinska forskningen
https://www.dn.se/kultur/lisbeth-sachs-inbillningens-kraft-tar-plats-i-den-medicinska-forskningen/

The power of imagination takes centre stage in medical research

[...] [Kaptchuk] argues that we need to stop pretending that everything is about molecular biology. Serious illness is also influenced by aesthetics, art and many other things that surround people in their lives, but also by moral issues mediated between doctor and patient. The placebo effect always interacts with any medical treatment where there is interaction between carer and patient. The effects stem from therapeutic encounters involving rituals, symbols and mutual influence. They are said to be due to complex neurobiological mechanisms and the activation of specific, measurable areas of the brain, allowing the emotion to be studied objectively.

The power of this research, which in recent years has risen to the challenge of addressing the big and important questions about the human capacity to heal, must now be encouraged and taken very seriously. A new way of thinking, a new way of knowing about human beings is emerging in our part of the world. As I see it, there is only one way to go: serious, thorough research in which an open dialogue on the difficult and complex issues is made available through honesty and an ethical approach to seeking knowledge. In such a process, it may also be possible to redefine concepts such as evidence-based medicine, self-healing and the natural course of disease. Actually, such considerations involving emotional and spiritual elements in healing have been around for many years. But they have been treated as less credible and belonging to so-called alternative medicine. [...]

 

[rvallee]

By function and definition, not only is "the placebo" the least effective treatment possible, since every single approved treatment has to do better than "placebo", many treatments that don't work did better than placebo, so the placebo is even less effective than treatments that don't even work. There will never be rigorous research into this because the minute you introduce any rigor all the "effects" disappear.

This is silly. When you make scientific experiments, you have to account for all other things being equal and make precise measurements about the phenomenon you are studying and nothing else. In clinical trials they almost never do precise measurements, they often don't even make measurements, and very few things are actually equal. And that's besides all the damn bias that always turns to excessive levels when it comes to biopsychosocial and evidence-based medicine trials.

This is why the results are all over the place, not some magical effect that is effectively the least impactful thing ever. It's no different than "ghost hunter" TV shows where they attribute whatever happens to "maybe it's ghosts, who knows? see you for next week's episode / more research is needed".

If anything, the last few decades of research has shown that it's all bunk, but the belief still remains in medicine, higher than ever. That's what's powerful: their infinite belief in magical thinking where science is not there yet. Same as it ever was. This will all go down as one of the most foolish nonsense in the history of all sciences, likely the most, far and above all the other debunked belief systems and ideologies.

And it's certainly right that they are alternative medicine. Merging alternative medicine beliefs with scientific medicine will only make both worse. And because medicine is so personal, it will sow massive distrust in all experts, doing even more harm.

 

[Sean]

Actually, such considerations involving emotional and spiritual elements in healing have been around for many years. But they have been treated as less credible and belonging to so-called alternative medicine.

For very good reasons.

 

[mango]

Vårdgivarguiden Region Stockholm: Mottagning tar emot fler postinfektiösa tillstånd
https://vardgivarguiden.se/nyheter/2023/december/postcovid-huddinge/

Auto-translate said:

"Clinic accepts more post-infectious conditions

News, published 13 December 2023

As of 15 December, the post-covid clinic at Karolinska Hospital Huddinge is expanding its mission to include other post-infectious conditions, such as suspected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The clinic is renamed the Post-Infectious Diseases Clinic.

Patients with post-infectious conditions should primarily seek treatment in primary care. In cases where primary care investigation efforts are not sufficient or lack important key competencies, patients should be referred to specialised investigation at the Post-Infectious Diseases Clinic. The clinic can also offer some treatment and rehabilitation during the investigation period, as well as offer investigation for already diagnosed patients when there is a need for further investigation at the level of specialised care.

The clinic will thus receive patients on referral from primary care and have a consultative mission for diagnosis and investigation in dialogue with the referring clinic."

It doesn't say if they accept referrals from other regions than Stockholm. Sounds like they don't accept self-referrals, which would be a problem for lots of patients in several regions where it's extremely difficult or impossible for pwME to get a referral from primary care.

PwME who have asked for a referral to the clinic have now started receiving replies, and are posting on social media about it. Seems like it was just empty words...

Here's a auto-translated quote from a typical reply from the clinic, received by a severely ill pwME whose referral was turned down today:

"Unfortunately, we are unable to accept patients with a previously established diagnosis of Postviral Fatigue/ME/CFS for follow-up or drug treatment."

 

[Kalliope]

oh, what a pity. This was the clinic with Dr Per Julin? I hope some noise can be made. Another blow to ME patients in Sweden

 

[mango]

Minutes from a meeting 21 November 2023, Region Stockholm Healthcare Board (Hälso- och sjukvårdsnämnden).

https://docs.netpublicator.com/api/...33553-b9c08031f1906433889-c06ff17237486280214

The relevant content starts on page 22.

Investigation and consultation assignment regarding post-infectious diseases at Karolinska University Hospital

The Moderates, Christian Democrats and Liberals are concerned about the consequences of the left-wing government's earlier decision to close the last specialised clinic for patients with ME/CFS. Now comes the next step in the process, when the left-wing government wants to place an investigation assignment regarding ME/CFS together with the postcovid clinic.

In February 2023, the Moderates, Christian Democrats and Liberals demanded that the matter that was then under consideration should be referred back to be supplemented with a proper impact assessment and a structured plan on how primary care, psychiatry and investigation units should be structured, how financing should take place, and how the care of the patient group should take place before the phasing out of care choice specialised rehabilitation for long-term pain and exhaustion disorder, which also includes the treatment of patients with ME/CFS. This did not happen and now the left-wing government is proposing that Karolinska be given an investigation and consultation assignment regarding post-infectious diseases.

The patients who currently receive care under the health care option have been referred there by primary care. The left-wing government has already chosen to pull the rug out from under these patients and wants to send them back to primary care, which risks hitting a fragile patient group consisting largely of women. With increased competence and more support from the assessment unit, primary care can certainly provide more care for the group suffering from exhaustion, but this is also based on the existence of clinics with special expertise to deal with this group. To abruptly terminate the agreements with all existing care providers and push a fragile and complex patient group into primary care, or specialist psychiatry, in less than two years' time, however, we see as risky and something that does not benefit the patient group. The previous investigation describes that 2/3 should go to primary care, but not in what way or with what resources should be provided to primary care. Primary care needs to be able to afford to employ those who are to treat these complex patients, and adequate guidelines are needed.

The region's academic primary care centre (APC) has an important role in both education and research in primary care. Collaboration with other regions where research on post-infectious conditions takes place, such as Östergötland, would also be preferable to use resources more efficiently.

In April 2023, the Government commissioned the National Board of Health and Welfare to develop national knowledge support for post-covid and other post-infectious conditions. The assignment includes a comprehensive national knowledge support for diagnosis, care and rehabilitation of post-covid and other post-infectious conditions aimed at both primary and specialist care, as well as social services. This is an important step in the right direction.

In the light of the above, we therefore propose the following in addition to the mandate for investigation and consultation.

Proposal for an additional decision

The Health and Medical Services Board decides the following:

1. to ensure that the knowledge and experience of staff in specialised clinics is documented before it is lost. It should be given space and job opportunities in a limited number of health centres. This way, this knowledge can be gradually transferred, so that more people can provide competent care for ME patients in the future.

2. intensify research on ME and post-covid, now that particularly favourable and unique opportunities have arisen from the global pandemic, where new treatment options and causalities should emerge.

Special statement by the Sweden Democrats

Investigation and consultation assignment concerning post-infectious diseases at Karolinska University Hospital

The Sweden Democrats are in favour of an investigation and consultation assignment for the care of patients with post-infectious diseases at Karolinska University Hospital within the activities of the post-covid assignment and incorporated into the hospital agreement, primarily because of the opportunities it opens up for research and development that can lead to more knowledge and improved treatment methods for the patient group.

However, we are concerned that a large group of patients will be transferred to and cared for in primary care, which in recent years has had to take over several tasks without sufficient cost coverage and upscaling of the relevant activities. It is well known that primary health care is already undersized and suffering from a skills shortage that cannot be remedied by financial injections but whose solution depends on recruitment, training time and the ability to retain healthcare staff.

There is an imminent risk and a legitimate concern that primary care has not had the conditions for the competence-enhancing initiatives and the professional reinforcements required to manage
reinforcements required to care for often complex pain patients.

 

[mango]

PwME who have asked for a referral to the clinic have now started receiving replies, and are posting on social media about it. Seems like it was just empty words...

Here's a auto-translated quote from a typical reply from the clinic, received by a severely ill pwME whose referral was turned down today:

"Unfortunately, we are unable to accept patients with a previously established diagnosis of Postviral Fatigue/ME/CFS for follow-up or drug treatment."

When confronted with questions about why this turned out exactly as feared, even though they were fully aware of the fears/potential problems even before the decision was made (see my previous post, the one with the meeting minutes), the politicians don't seem to have any good answers at all.

The politicians' main talking point seem to be the following (according to posts made by pwME on social media):

"The aim of the changes made in ME/CFS care is to improve care at different levels and increase the possibilities for evaluation and development of care."

I wish the patient organisation would ask the hard questions, and insist on answers. (Maybe they have, we don't know because there's no transparency at all.)

For example: how will the clinic evaluate whether they have given the patients the correct diagnosis, if they only diagnose them but don't do any long-term followups at all? How exactly are they planning on accomplishing this "improved care", when they have chosen to not follow any patients over an extended period of time and to not accept patients that have been living with this diagnosis for a number of years? How can research be conducted if you only have a constant stream of new patients, that are kicked out/discharged after a short period of time?

If you don't follow patients over time, how are you planning on building clinical experience/understanding of things like diseases progress, how symptoms affect function and activity, or evaluating treatments over time? How would you find out what kind of support needs the patient group has during the course of their illness and how those needs might change over time (newly diagnosed, before/after learning about pem and pacing, while fighting the system for their right to sickness benefit/social security payments, and so on) and between different severity levels?

And what about long-lasting/permanent deterioration caused by extreme and/or repeated PEM, how will you ever be able to get insight into these things if you don't follow patients over time?

 

[Midnattsol]

Not ME related, but I am finding it interesting all the same. For those following the Norwegian ME debate, Nina Kristiansen in Forskning.no has repeatedly written off any non-biopsychosocial research/news on ME, including the 2021 NICE guidelines.

There is currently a debate on the emulsifier/thickener/preservative carragenan in Norwegian media, and Kristiansen have called out researchers who are worried about the potential negative effects of this compound. She cites a report by the Norwegian Food Safety institution as proof the claims of negative health effects are unfounded, and we should trust the system and the people that follow rigid criteria for systematic reviewing the science. You know, just not when it's about ME and goes against one's own views

 

[mango]

Risk för flera år av ”hjärndimma” efter mild covid
https://www.gp.se/nyheter/sverige/r...ld-covid.f60cbaf7-0ec9-432f-8626-4311a9e2bddd

Risk of several years of 'brain fog' after mild COVID-19

Sweden. Being infected with COVID-19 can cause several years of brain fog, concentration difficulties and fatigue even if you only have cold symptoms, according to new research from Danderyd Hospital.

- "Our patients in this study have had mild or moderate infections, many have had an ordinary cough or a cold," says chief physician Kristian Borg.

Nowadays, many people see COVID-19 more as a cold and not as something to worry about. But new research from Danderyd Hospital shows that even mild infections, without any need to seek medical attention, can cause long-term impairments in memory, attention and the ability to learn new information.

Directly linked to the virus

Research on the impact of the virus on cognitive functions was carried out as early as 2020. It looked at patients in hospitals and intensive care units.

- "We initially thought that these cognitive symptoms would disappear as quickly as problems with breathing, smell and taste, but now it is clear that they do not," says Kristian Borg, senior physician and professor at Karolinska Institutet, who was involved in the study at Danderyd Hospital.

Since this latest study showed the same results, it is concluded that it is a direct consequence of the virus.

- "In the first study, we speculated a little about whether the cognitive problems were due to the fact that the people had been in intensive care for a long time, but now we see that this is not the case. Instead, it is a direct effect of the virus itself," says Kristian Borg.

Unclear if everyone recovers

Exactly how long these cognitive problems may persist is still unknown. The study includes patients who fell ill with Covid-19 in early 2020 and who still have the same problems today.

- "We have no idea how long these problems can last," says Kristian Borg.

It is also unclear exactly how to rehabilitate those affected.

- 'I hope that these problems will subside over time, but as things stand now, it is more likely that the improvements we see in patients are about them compensating in other ways.

Kristian Borg is a senior physician and professor at Karolinska Institutet. He has also been involved in research on cognitive impairment after COVID-19.

Forgetting how email works

About 20 per cent of those infected with COVID-19 say they still have symptoms after eight weeks. Around 10 per cent say that the symptoms remain after 12 weeks.

The cognitive post-covid clinic at Danderyd Hospital has seen around 1 000 patients over a year and a half. These are people who first tried to be rehabilitated via primary care.

- 'Nowadays we get around five or six referrals a week. We thought that the number would have decreased by now, but they have continued to come in,' says Kristian Borg.

Among these patients, the problems they have vary greatly. There are those who are unable to use their computer and those who notice that their social skills have deteriorated.

Many of the participants in the study have had to go on sick leave because of their post-covid.

- 'It becomes very noticeable if you have a job where you suddenly don't understand what is written in an email,' says Kristian Borg.

I haven't been able to find the new study, maybe it hasn't been published yet? Here's a couple of their previous publications:

Cognitive dysfunction in post-COVID-19 condition: Mechanisms, management, and rehabilitation
https://onlinelibrary.wiley.com/doi/10.1111/joim.13720

Preliminary Findings on Cognitive Dysfunction in University-Educated Patients After Mild COVID-19 Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10757160/

 

[Ravn]

A visual journalist's portrait series of 8 pwME.

Unfortunately the text is in image format so can't copy and paste to translate. But the pictures speak for themselves.

Some of the quotes describe the limitations ME imposes but mostly they're about dreams for the future. Marie Louise starts with "I dream of daring to dream again"

https://www.madsjoakim.com/pageme

 

[Jaybee00]

https://www.cnbc.com/2024/01/30/wor...lth-fund-posts-record-213-billion-profit.html
World’s largest sovereign wealth fund posts record $213 billion profit, boosted by tech stocks

https://www.cnbc.com/2024/01/30/wor...lth-fund-posts-record-213-billion-profit.html
https://www.cnbc.com/2024/01/30/wor...lth-fund-posts-record-213-billion-profit.html


Spare a Kroner or two for MECFS research?

 

[mango]

Risk för flera år av ”hjärndimma” efter mild covid
https://www.gp.se/nyheter/sverige/r...ld-covid.f60cbaf7-0ec9-432f-8626-4311a9e2bddd

Kristian Borg, one of the researchers, was interviewed on TV yesterday. Video is available in the article linked below.

Överläkaren: Mild covid kan få allvarliga effekter på hjärnan
https://www.tv4.se/artikel/6je780Bn...-covid-kan-fa-allvarliga-effekter-pa-hjaernan

Chief medical officer: Mild covid can have serious effects on the brain

Tends to linger - This help is available

Swedish research now shows that even mild COVID-19 infections can have long-lasting effects on brain function.

Kristian Borg, senior physician and professor at Karolinska Institutet, is concerned about the results.
- 'It's surprising and unpleasant,' he says in Nyhetsmorgon.

Chief physician Kristian Borg runs a clinic at Karolinska Institutet where he sees patients who, after only a mild covid infection, still have such severe cognitive problems that they cannot perform their work. The results of their study are surprising, he says.

- "We look at conjunctive functions, memory, and concentration and processing speed. We had expected it to ease up, but we have patients who have had problems since mid-2020, and we have seen that the covid tends to stay there. Those we see who come here have similar problems - still after a number of years.

Advanced testing

To assess the patients' condition, advanced neuropsychological training is used to challenge the different functions of the brain. This is because many of the patients are no longer able to perform simple tasks such as reading emails.

- These can be people with highly skilled professions. We often see doctors, psychologists and teachers. There is a large number of unreported cases.

But there is rehabilitation available. It aims to compensate for the functions that have been lost. In the case of fatigue, which is called brain fatigue, the day is divided into parts. You have a specific task during this period and rest in between. Then the number of tasks gradually increases.

'Surprising and unpleasant'

The patients who visit the clinic have not had any contact with the healthcare system during the peak of the COVID-19 spread. Yet they are still unable to do their jobs. Kristian and his colleagues have taken a closer look at middle-aged people, mostly women, who have a high level of education.

- 'We can see that they have a patchy effect on their conjunctive functions,' says the consultant and continues:

- "On some of these tests, they hit the ceiling. On other tests they have no function at all. I find that unpleasant. Surprising and unpleasant.

New disease

A similar condition has never been found before and doctors are allowed to use the methods they have used for other diseases in the past. In addition, several other studies are running in parallel, testing different rehabilitation programmes - at different levels and in different ways.

- "We are mainly looking at chemical parameters. Some of them signal that there is a brain effect going on. This type of study takes a very long time and more research is needed, but in due course we will have a result.

 

[mango]

Kristian Borg, one of the researchers, was interviewed on TV yesterday. Video is available in the article linked below.

Överläkaren: Mild covid kan få allvarliga effekter på hjärnan
https://www.tv4.se/artikel/6je780Bn...-covid-kan-fa-allvarliga-effekter-pa-hjaernan

@MittEremltage shares her thoughts on the interview. Do click through and read the whole post

Sur rant från arg tant
https://mitteremitage.wordpress.com/2024/01/30/sur-rant-fran-arg-tant/

No. FFS, enough is enough. I can't stand the healthcare system's bizarre treatment of people with post-infectious diseases anymore.

[...] So here we have a professor of rehabilitation medicine who works with cognitive difficulties in post-covid and claims that the condition is something completely new.

(Have we heard it before since the pandemic started??)

In 2012, almost a decade before post-covid cognitive problems were a fact, the same professor lectured at an ME conference on the theme "Post-polio syndrome and neuroinflammation - relevance to ME/CFS?". He starts this lecture by saying that he has followed ME for a long time and that there are common denominators between the diseases. In the lecture, the professor explains that post-polio has been known for a hundred years. He also talks about fatigue and says that "this fatigue [in post-polio] is very different from ME". Because post-polio fatigue is mostly physical and does not have the cognitive impact of ME.

If Professor Borg already knew more than ten years ago that ME sufferers can have cognitive impairment - so severe that they can no longer do their jobs even though they are intelligent and were high performers before the illness - how the hell can he claim that something similar to the cognitive impairment his patients have after COVID-19 has never been found before? Just because he himself has not seen this type of patient before does not mean that they have not existed. This is particularly strange as he collaborates with people who have worked on post-infectious diseases in the past. In December 2023, for example, he published a research paper together with a former ME doctor.

Yes, I think it is good that Kristian Borg recognises and draws attention to post-covid. That he shows that a relatively mild infection can cause long-term severe disease in the aftermath. But why insist on denying those of us who fell ill with similar symptoms even before covid? In addition to being cruelly unsympathetic, it would actually be better for all parties if you took into account that we exist. If you took advantage of the knowledge we, our doctors and researchers have gained over the years. Both healthcare and research would benefit from it.

Of course, you wouldn't be able to claim that you were the first to discover something new.

By ignoring and neglecting what has happened historically, you will (continue to) subject people with PEM to harmful treatment. You will pressure those who cannot tolerate stress in a way that makes them sicker. So that instead of being able to return to work, they become permanently impaired. Increase their suffering. Some people will become very, very seriously ill. And some bodies and minds won't be able to cope.

Honestly. This is _exactly_ what kills.

And I'm sick and tired of you never getting it!

 

[rvallee]

But there is rehabilitation available. It aims to compensate for the functions that have been lost. In the case of fatigue, which is called brain fatigue, the day is divided into parts. You have a specific task during this period and rest in between. Then the number of tasks gradually increases.

Just like the history of the Toronto SARS clinical rehabilitation lead, who despite acknowledging that none of his rehabilitation made any difference, would do it all over the same way again. They can't seem to see anything in front of them unless there is technology giving them a number with a standard range and deviation. It's either science or delusional medieval nonsense. They'll just try the same failed approach over and over again and either never notice or never care that it does nothing.

And that's on top of those useless services barely serving, maybe what, 1% of the patients? At most. There is really a crisis of basic awareness of what's literally right in front of them. You can stick both their hands on the emperor's crotch and they'll still swear that they can feel the golden silk. It's incredible.

And that:

A similar condition has never been found before and doctors are allowed to use the methods they have used for other diseases in the past. In addition, several other studies are running in parallel, testing different rehabilitation programmes - at different levels and in different ways.

Is just staggering incompetence. It's truly as if nothing matters, they'll just choose whatever facts they want and run with it. No system can perform effectively like this. Even politics has to, sometimes, recognize basic truths.

 

[mango]

the day is divided into parts. You have a specific task during this period and rest in between. Then the number of tasks gradually increases.

Also, in the video interview Borg said that 'this is pacing' So again we are seeing this distortion and misrepresentation of established concepts/terms Call it pacing but make it GET?