News from Scandinavia

[mango]

Ironic, but this is one of the darkest truths with the continued obsession with psychosomatics, it not only ruined medicine's ability to deal with chronic illness, it also effectively made all efforts related to mental health so much worse that they amount to nothing, they ended up mixing so many different things in there that the whole thing could be restarted from scratch and nothing of value would be lost.

A quote from the article:

She returns to the separation of mental and physical illnesses in health care and how this affects the way ME sufferers are treated.

- This disease is not visible through blood tests and other common tests - so antidepressants are often prescribed quickly, and when this doesn't help, it can easily become a frustration for the sufferer who knows that they are not suffering from mental illness, you are bounced back and forth and are outside of everyone's responsibility. That is a big problem for people who suffer from this illness.

She believes that the way the health care system treats people with ME and its tendency to refer them to psychiatry creates a desire and a need for many sufferers to explain that they are suffering from a neurological disorder.

- It becomes a cry for help and many feel that they are not taken seriously. All this is based on the fact that healthcare is built wrong and that healthcare professionals need to be trained in what happens when people are treated with mistrust.

 

[Sean]

what happens when people are treated with mistrust.

And worse.

 

[Ravn]

Paywalled, unfortunately, the little snippet we get access to is interesting. Not that often we see senior physicians going public with their ME and additionally this one worked in Aarhus, infamous for also housing Fink

From senior physician with full speed in his career, to bedridden around the clock

Bendt Nielsen worked until two years ago as a specialist in hematology and senior physician at Aarhus University Hospital. Here he tells his story about an illness course with ME/CFS, which he hopes will make the readers reflect on whether the diagnosis and treatment of ME/CFS is good enough in Denmark, where and when the healthcare system fails, and especially how the healthcare system can strengthen efforts for patients with ME/CFS.

This is not the story of the experts. Nor is it a contribution from one of the trenches in the often highly polarized professional debate about ME/CFS, which is characterized by mutual distrust between doctors, patients and politicians. This is the story of Bendt Nielsen, a now 64-year-old senior physician who thrived in his medical work, and who until two years ago had a normal and well-functioning private life and an active leisure time with tennis at a high level and long runs. My hope is that…

https://dagensmedicin.dk/fra-overlaege-med-fuld-fart-paa-karrieren-til-sengebundet-doegnet-rundt/
https://dagensmedicin-dk.translate....uto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

 

[mango]

Kan bli lättare för personer med kronisk trötthet att få sjukpenning
https://sverigesradio.se/artikel/kroniskt-trotta-kan-fa-det-lattare-att-fa-sjukpenning

May get easier for people with chronic fatigue to get sickness benefit

Recently, the Supreme Administrative Court ruled that the Swedish Social Insurance Agency may not require objective examination findings and observations when it comes to exhaustion disorder ["utmattningssyndrom", which is a separate diagnoses in Sweden - mango].

The Social Insurance Agency's acting head of law Marie Axelsson says that the agency will interpret the ruling so that it also has significance for other diseases, for example. ME/CFS, also known as chronic fatigue syndrome.

"I really hope that they can approve sickness benefit in the future now," says Emmelie, who has ME/CFS and was recently denied sickness benefit.

It was a new officer who found that Emmelie's blood tests did not show that she was ill and withdrew her sickness benefit in early November. When the Social Insurance Agency re-examined the case, it again found that there were no objective findings to explain why Emmelie has difficulty leaving her bed.

- It feels like an insult not to be believed. You are ill and you are not believed. They don't trust the doctor's judgement and they don't trust me either. It's terrible.

But recently the Supreme Administrative Court ruled that the Social Insurance Agency may not demand objective examination findings and observations when it comes to exhaustion disorder. And now The Social Insurance Agency's acting head of law Marie Axelsson says the agency will interpret the ruling so that it also has significance for other illnesses, such as ME/CFS, chronic fatigue syndrome.

- Yes, it could be. And what you can say is, well, diseases where you can not expect that there are objective examination findings.

Ekot has previously reported that between 2014 and 2019, the Social Insurance Agency had a governing document that resulted in case managers requiring examination findings for all kinds of diseases in order to grant sickness benefit. This created problems for patients with e.g. depression and ME/CFS or chronic fatigue syndrome, diseases that rarely have objective findings. And even though Försäkringskassan clarified in 2019 that examination findings should not be required for all illnesses, the problems have continued for patients like Emelie. She hopes the ruling from the Supreme Administrative Court will make a difference.

- They should not refuse in this case. So I really hope that they can approve sickness benefits in the future now. It would mean a lot. That you get the right to be sick.

The Social Insurance Agency's Marie Axelsson cannot comment on Emmelie's case, as it is currently being reviewed. Nor can she say that it will generally be easier for people with ME/CFS to get sickness benefit, following the ruling from the Supreme Administrative Court.

Yes, it's very difficult to say, of course. But it is important that this is clear so that when we make our assessments in individual cases, we do the right thing.

(This problem started long before 2014, though. I know of many cases from 2008 onwards.)

 

[rvallee]

This is one way this could work. So far systemic denial has "worked" because it justified denying most forms of support, especially financial, which hid most of the costs. If it starts costing too much money that actually gets counted, well, there's only one way out of paying indefinitely: get to work and solve this, it's obviously treatable anyway.

Maybe mixed with too much impact on the workforce, but it's all indirect and easy to ignore. But direct spending is counted and it can always be pointed out that they've always held the key to solving this. If they hadn't bet everything on the magical unicorn stuff, it likely would have been solved already. This cannot be said enough: all those costs are self-inflicted as a result of having refused to do the work.

 

[RedFox]

This is one way this could work. So far systemic denial has "worked" because it justified denying most forms of support, especially financial, which hid most of the costs.

Good point. Letting peME suffer costs nothing, but adequately supporting them is expensive. In America, the average person with multiple sclerosis incurs far more costs than the average person with ME, because there are drugs for MS, but they're very expensive.

 

[Sly Saint]

Major knowledge gaps about exhaustion disorder

The diagnosis exhaustion disorder accounts for the majority of all long-term sick leave in Sweden. However, a research review indicates that the scientific evidence behind the diagnosis is weak.


Elin Lindsäter, a researcher at the Department of Clinical Neuroscience at Karolinska Institutet and psychologist at Gustavsberg Healthcare Center, and colleagues have recently published a review of all the research done on the diagnosis since it was introduced in 2005. The researchers found 89 studies.

"There has been surprisingly little research, given that it is a major societal problem and that the diagnosis accounts for the majority of all long-term sick leave," she says.

One research question is whether there are biological changes, in the brain for example, that are unique to exhaustion disorder. According to Elin Lindsäter, the research as a whole does not provide answers.

"The findings are scattered and the studies have not been done in such a way that it is possible to say whether any changes are unique to exhaustion disorder," says Elin Lindsäter.

There is also a lack of evidence on which treatment is efficient. The studies are usually small and have methodological shortcomings. Only a small number of randomized, controlled studies have been conducted.

The research shows that many people diagnosed with exhaustion disorder have a range of psychiatric and physical symptoms. But how these symptoms differ from other related diagnoses, such as depression, various anxiety disorders, fibromyalgia or chronic fatigue syndrome, is largely unresearched.

The diagnosis exhaustion disorder exists only in Sweden, but the symptomatology is common globally. According to Elin Lindsäter, it would promote further knowledge development to have increased collaboration with international researchers studying severe fatigue conditions from different perspectives and across different diagnoses.

https://medicalxpress.com/news/2022...s-exhaustion-disorder.html?deviceType=desktop

(paper here: https://www.cambridge.org/core/jour...ed-diagnosis/7CE153EF7FF5B89F09849F36EA10CD7C)

 

[Kalliope]

Article today from TV2 about 36 year old Heidi Andresen who suffers from ME. For the last 13 years her ME has been quite stable, and she's been able to work part time and have a bit of social life as well.

Then she deteriorated after the third dose of covid-19 vaccination.

TV2 say they've been in contact with several ME patients who deteriorated after 2nd and 3rd dose of vaccine.

The Norwegian Medicines Agency says there's no reason to believe that ME patients are experiencing other side effects than other people.

Professor Nina Langeland says the benefits of the vaccine are larger than the risk of not taking it. She says that the ME symptom fatigue also is one of the most common side effect of Covid. She also says health care workers should be honest about there being side effects of vaccines, even though they are rare.

Heidi's GP believes there is a connection between the vaccine and her deterioration. The doctor who is anonymous says:
- Many ME patients experience deterioration in symptoms after a virus infection. I believe this type of patients have a sensitive immune system, which can make them react stronger to a vaccine than what is to be expected.

TV2: Blei sjukare etter vaksine: - Me vil berre bli tatt på alvor
google translation: Became sicker after vaccination: - I just want to be taken seriously

 

[Peter T]

Article today from TV2 about 36 year old Heidi Andresen who suffers from ME. For the last 13 years her ME has been quite stable, and she's been able to work part time and have a bit of social life as well.

Then she deteriorated after the third dose of covid-19 vaccination.

TV2 say they've been in contact with several ME patients who deteriorated after 2nd and 3rd dose of vaccine.

The Norwegian Medicines Agency says there's no reason to believe that ME patients are experiencing other side effects than other people.

Professor Nina Langeland says the benefits of the vaccine are larger than the risk of not taking it. She says that the ME symptom fatigue also is one of the most common side effect of Covid. She also says health care workers should be honest about there being side effects of vaccines, even though they are rare.

Heidi's GP believes there is a connection between the vaccine and her deterioration. The doctor who is anonymous says:
- Many ME patients experience deterioration in symptoms after a virus infection. I believe this type of patients have a sensitive immune system, which can make them react stronger to a vaccine than what is to be expected.

TV2: Blei sjukare etter vaksine: - Me vil berre bli tatt på alvor
google translation: Became sicker after vaccination: - I just want to be taken seriously

Great shame there is no systematic recording of people with ME’s response to the Covid vaccine. Anecdotal reports like this are important, so well done to this paper for being up front about this. It has long been reported that some of us respond badly to vaccines but also possibly some even respond positively.

For people with ME and presumably those with Long Covid that presents like ME, if they are to make informed choices about vaccinations we really need at least some idea of the percentage risks. If we are as seem likely seeing higher rates of adverse reactions in people with ME wouldn’t also it make sense to try to find out what are the differences between those that respond badly and those that do not. This may help identify those that should consider avoiding vaccination despite the risk that involves.

 

[Dolphin]

 

[Andy]

Copying this here in case anybody would be happy to be interviewed by Mike.

hi all, and happy new year.

Am still going! Closing in on £47K, hoping to get to £50K soon.

Off to Bergen/Norway to run on April 29th and hoping to meet or interview some ME peeps over there (and maybe meet some scientists/researchers at Haukeland)

I put an appeal out to see if anyone wanted to tell me their story on Twitter and had a few replies but I wondered if anyone here knew of anyone? #norway

Cheers

Mike

 

[mango]

The Swedish Society of Medicine (Svenska Läkaresällskapet) is arranging their very first symposium on long covid rehab today, with both national and international experts.

Doctor and activist Lisa Norén is representing the Swedish Covid Association at the symposium. She tweeted:

Thomas Lindén from the National Board of Health and Welfare opened the programme. He wants to transfer knowledge from postcovid to the care of other diseases we have not been so good at, e.g. ME. Good!

However, he is unsure whether physical activity makes patients worse. He has heard it said by patients but doesn't think he has seen data on it.

Read more on Norén's Twitter:

The Swedish Society of Medicine is "the independent scientific and professional organisation for Swedish doctors, medical students, and allied healthcare professionals."

 

[mango]

Läkartidningen/the Journal of the Swedish Medical Association is again organising a webinar for medical professionals on burnout, ME and long covid. (Has been running yearly since 2018, if I remember correctly?)

Stressrelaterat utmattningssyndrom, ME/CFS och postcovid
Fredag 17 februari 2023, klockan 13:00
Webbseminarium via Zoom
https://events.magnetevents.com/Event/stressrelaterat-utmattningssyndrom-mecfs-och-postcovid-50576/

Stress-related exhaustion disorder, ME/CFS and post-covid
Friday 17 February 2023, at 13:00
Webinar via Zoom

Programme on 17 February 2023

13:00 - 13:05 Introduction. Associate Professor Margaretha Bågedahl-Strindlund
13:05 - 13:40 About exhaustion disorder. Senior Professor Marie Åsberg, Stress rehab KIDS, Danderyd Hospital, Stockholm
13:40 - 14:15 Treatment and rehabilitation of exhaustion disorder. Associate Professor Emma Brulin, Department of Occupational Medicine, Institute of Environmental Medicine, Karolinska Institutet, Stockholm
14:15 - 14:30 Break
14:30 - 15:05 Postviral fatigue, ME/CFS and postcovid. Per Julin, MD, Postcovid Clinic, Karolinska University Hospital, Huddinge.
15:05 - 15:40 Cardiovascular dysautonomia in postcovid. Artur Fedorowski, Senior Consultant, Cardiology Clinic, Karolinska University Hospital and Karolinska Institutet, Stockholm.
15:40 - 16:10 Closing and questions to the panel

 

[mango]

Two articles in the Swedish newspaper DN today, commenting on companies selling expensive gut microbiome self-tests and advice that lack scientific evidence. ME is mentioned.

Dyra tester och tveksamma råd: Så tjänar företagen pengar på tarmflora
https://www.dn.se/sverige/dyra-tester-och-tveksamma-rad-sa-tjanar-foretagen-pengar-pa-tarmflora/

Expensive tests and dubious advice: How companies make money from gut flora

[...] For between around 1,290 and 3,500 SEK, customers can find out what bacteria are present in the large intestine, how to eat and what supplements to take to change their gut health. This is despite the lack of scientific evidence that changing our diet and gut flora makes us healthy or prevents disease.

- The companies target their aggressive marketing at vulnerable groups, such as people with depression, obesity, ME or digestive problems. Send us your stools and we'll solve your problems. That's not how it works,' says Fredrik Bäckhed, Professor of Molecular Medicine at the University of Gothenburg.

Företaget: “Det är möjligt att vi var lite naiva i början”
https://www.dn.se/sverige/foretaget-det-ar-mojligt-att-vi-var-lite-naiva-i-borjan/

Companies offering gut flora tests are criticised for being too aggressive in their advertising. Fredrik Bäckhed, a professor and researcher at the University of Gothenburg, says they create unnecessary anxiety among vulnerable people with conditions such as ME (chronic fatigue syndrome), IBS (sensitive bowel syndrome) and depression.

 

[Trish]

Some posts have been moved to a new thread:

Sweden: termination of the contract for specialist medical care for ME in Stockholm, including the Bragée ME Center, 2023

 

[mango]

Johanna har skrivit en bok om ME – "Vården greppar inte vad ME är"
https://sverigesradio.se/artikel/johanna-har-skrivit-en-bok-om-me-varden-greppar-inte-vad-me-ar

Johanna has written a book about ME - "Healthcare doesn't understand what ME is"

ME sufferer Johanna Sjöström from Jönköping has written a book about what it's like to have ME.

With her book, she wants to reach out to ME sufferers and their families, but also to healthcare professionals and politicians, as she feels that ME sufferers are not always taken seriously.

"People in healthcare still don't think it's a real disease," she says.

ME/CFS is a neurological disease that makes you very tired and exhausted. It can't be rested away. You can feel sick and have aches and pains in your body. There is no treatment that completely removes the symptoms. But there are things you can do to relieve many of the symptoms. Source 1177.se

 

[mango]

Johanna har skrivit en bok om ME – "Vården greppar inte vad ME är"
https://sverigesradio.se/artikel/johanna-har-skrivit-en-bok-om-me-varden-greppar-inte-vad-me-ar

 

[mango]

The regional council assembly (regionfullmäktige) in Region Örebro, Sweden, recently rejected a motion to develop the region's compentency regarding ME.

The minutes of the meeting:
https://politiskamoten.regionorebrolan.se/committees/regionfullmaktige/mote-2023-02-13

Video recording of the debate:
https://secure.quickchannel.com/qc/create/mainshow.asp?id=5y8j7b9

We propose that the Regional Council decides:

* that Örebro Region establishes a knowledge centre for ME at Örebro University Hospital,

* that Örebro Region invests in knowledge acquisition and strengthens the competence around ME, mainly within primary care.

* that Region Örebro enables this patient group to be offered long-term rehabilitative interventions to increase quality of life.

Why they rejected the motion:

There is still insufficient scientific evidence and insufficient experience from the healthcare system, and there is a lack of consensus in health care on diagnosis and treatment [...]

The focus is [already] on securing access to care by raising the level of competence in primary care [...]

Örebro Region is working continuously to secure and develop the care chain for ME and post-covid diagnoses in both primary and specialist care. A consequence of this is a general increase in competence.

 

[rvallee]

That's some galaxy brain logic here.

"Let's develop skills and experience on this issue"
"No, we can't, we don't have skills or experience on this issue"

Shmart stuff. Truly the work of geniuses at being experts and stuff.

Just say you don't want to and can't be bothered to care. We all know this is what you mean, that you can't recognize your own failures and would rather keep on failing, harming people, than admitting to it and having to change.

 

[mango]

Hanne Kjöller (Swedish bps extremist, nurse, columnist) comments on a tv programme about the brain.

Vi älskar att prata om vad som gör oss sjuka – det gör oss inte friskare
https://www.dn.se/ledare/hanne-kjol...-som-gor-oss-sjuka-det-gor-oss-inte-friskare/

Hanne Kjöller: We love to talk about what makes us sick - it doesn't make us healthier

Of course it's convenient to have a diagnosis that puts the responsibility on the [social] environment. But it's ourselves and our own choices that we have control over.

[...] Exhaustion disorder is the single most common diagnosis of sick leave in Sweden. In other countries it does not even exist.

Doctors I speak to tell me that the closest alternative diagnosis (unless it's depression) is adjustment disorder. The name is not exactly appealing. Who wants to be "disturbed" (something wrong with me) when you can be "burnt out" (something wrong with the environment)?

But adjustment disorder, it is explained to me, really just describes that there is (at the moment) a gap between ability and demand. The diagnosis says nothing about whether it is the demands that are too high or the individual's ability that is too low. The solution lies in bridging that gap regardless of whose "fault" it is. And since it is undeniably more difficult to make the outside world adapt to the individual than the individual to adapt to the outside world, the sick person is empowered.

Very frustrating and sad that a serious paper like DN keeps publishing this kind of ignorant, dismissive bs...