News from Scandinavia

Such diseases get a lot of attention in the mass media
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What do we have here, a comedian? The worldview of psychosomatic fanatics is so telling: they are solipsists, the only world that exists is the one they perceive and if they don't perceive something it doesn't exist or is simply unimportant. It also follows that what they perceive is what everyone perceives, that if they read a lot and are obsessed with this stuff then clearly everyone must know and talk about the stuff that interests them.

You can see the same stuff in old writings about neurasthenia, how "everyone is talking about this stuff, it's the talk of the town", simply because this is what they think about. Or some people like Gerada weirdly describing a world in which people perceive medical doctors as all-knowing geniuses, a lifeline for people's non-medical problems, which absolutely no one does.

It's a form of toddlerism, where one's worldview is a tiny bubble centered around themselves. Lacking object permanence, to boot. It's really weird that medicine can't filter out such people. Having a great memory simply isn't good enough, especially with misanthropes who seem to have little care for human life other than their own.
 
mango said:
I don't know if he is what you would could call "a known doctor" or not.
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Jörgen Malmquist is a former hospital doctor and also an Associate Professor ("docent"). He has published several books and several opinion pieces in the Journal of the Swedish Medical Association ("Läkartidningen"), and he has appeared in media on some occasions. I think he is fairly well known, but I don’t know if he is respected. Probably in some circles that share his ideas.

Sometimes when I argue with him, I wonder if science theory is in the medical curriculum. He can make arguments such as “chronic unexplained fatigue is a cardinal symptom of ME/CFS, therefore ME/CFS is the same as chronic unexplained fatigue.” When I try to explain that a) it is not the symptom that best differentiates ME/CFS from other illnesses and b) even if it is an important symptom, it is not necessarily the only defining symptom of the syndrome; he just doesn’t get it, but repeats ad nauseam that ME/CFS is chronic unexplained fatigue. :banghead: :banghead: :banghead:
 
A young Swedish woman with ME and EDS writes about her new functional/psychogenic diagnosis. She's a patient at Bragée ME Center, according to her earlier IG posts.

:(



This is her recommendation for further reading (in the IG post caption) :(
http://funktionellasymptom.se/

ETA: Just in case it's not obvious: I think it's hugely problematic if a ME center (that claims to be biomed..!) is adding problematic psychiatric diagnoses for symptoms that are not uncommon in ME, especially severe/very severe ME.
 
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PAEDIA (Ahus, Wyller) is looking for a postdoc to work on late effects after infection, particularly fatigue.
https://www.jobbnorge.no/en/availab...w-at-dept-of-pediatrics-and-adolescent-health

The person holding the position is supposed to plan, conduct and supervise immunological laboratory analyses of acquired biological specimens from post-infectious cohort studies, such as flowcytometric analyses and functional in-vitro assays of viable peripheral blood mononuclear cells (PBMC). Other working tasks include statistical analyses of the relationship between laboratory results and clinical data, drafting of scientific papers, and supervision of at least one PhD-student affiliated with the project. Furthermore, the postdoctoral fellow will participate in managing the COFFI-consortium, and will contribute to relevant grant applications.
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English translation; Commentary/feature, 10 Aug 2020 in the newspaper Firda



"Is being met with respect and understanding too much to demand?"

‼️⚠️ An exceptionally and uniquely good statement from Agnete Skrede

Commentary/feature, 10 Aug 2020 in the newspaper Firda (@firdamedia) "Is being met with respect and understanding too much to demand?", By the Charity Organization, Focus on ME (@fokuspame) by Agnete Skrede from Stryn, Norway (support/donate their work: VIPPS 548006 or see their homepage)

Link: https://www.firda.no/synspunkt/a-bl...ng-er-det-for-mykje-a-forlange/o/5-15-1026408

Very Severe ME patient (25% group) Agnete Skrede writes:

Last autumn (13.09.19) I wrote a newspaper article in Firda with the headline "it is the seriously ill who suffer, not the healthy". There I asked why not all patients should receive a health service that ensures quality for the patient's best ? I referred to Article 12 of the UN Convention on Economic, Social and Cultural Rights (EESC), which states that everyone has the right to the highest attainable standard of health, both physically and mentally.

I have mentioned several times that this is something we do not have in Norway when it comes to the disease Myalgic Encephalopathy. The World Health Organization classified ME as a neurological disorder in the ICD10 system G.93.3.

What does the World Health Organization mean for Norway?
The health authorities in Norway do not currently accept ME as a somatic disease. We do not consistently use the World Health Organization's classification.

One uses the trump card that we have freedom of expression, but freedom of expression also entails duties and responsibilities, cf. Article 10 of the Human Rights Act.

The right to speak, express and acquire information and opinions must from time to time be weighed against other rights such as the protection of privacy or discrimination.

One can restrict freedom of expression to protect health or morals, to protect the reputation or rights of others.

It cannot be the case that freedom of speech is to be at the expense of patient safety.​

Where has the editorial responsibility gone when one goes on the attack on seriously ill patients? Something that has occured with several newspapers.

If there is one thing that takes the hope away from patients who are seriously ill, it is the arrogance and neglect that part of the support system is able to execute.

Trust is one of several elements that are absolutely crucial to whether one is able to help the patients you are responsible for.

How can anyone trust the health/support services when one has experienced to be pressure into a more serious degree of the disease, when one is denied that ME is a physical disease, when one is discriminated against, harassed and subjected to abuse?

What if you do not feel any safety when you are admitted to hospital?​

Why do the child welfare service get involved in cases?

How did it go so wrong?​

The reason is that the knowledge is not there and there is no willingness to acquire knowledge, as well as faith in the World Health Organization's classification. We need a support system that understands all the symptoms of ME, and its degrees."

"The August 8th has been chosen as an international memorial day for raising awareness of severe to very severe ME. The date was the birthday of a young British woman, Sophia Mirza, whom died of ME at the age of 32 years old.

Sophia died of ME in England in 2005. At autopsy, nothing wrong was first found that explained her long-term illness, but when the body was given for research and a thorough autopsy was performed, they found that 75% of her posterior ganglia cells, nerve cells in the spine, was infected with a virus. Sophia had been subjected to gross abuse and harassment by the English health service.

We do have severe afflicted ME-patients in Norway. Several are exposed to gross negligence and abuse. We have several who have died of the disease. The most severe ME patients are cared for years. They need to be listened to and treated with respect. The abundant range of symptoms is often divergent from what coming forth ».

15 years after Sophia Mirza passing in London in 2005, people with severe and very severe ME suffer indefinitely without hope of treatment, cure or being met with respect.​

Why do the Norwegian health authorities not commit themselves to taking the responsibility that weighs on their shoulders?
Why does the general public not commit themself to care for ME patients?

Is being met with respect and understanding really too much to ask for?​

Read the rest of the Commentary/feature...

#MEawareness #SevereMEday8aug #SevereMEweek
#MyalgicEncephalomyelitis #PwME #MEcfs #LifeMatters
#MEadvocacy #MEspokesperson #MEresearch #BioMedicalMEresearch #ResearchDissemination #Health #HealthAuthorities #WorthyofLife #WarrantyOfDignity

☆'·.¸✮'·.¸☆☆ME-HEROES☆☆'·.¸✮'·.¸☆☆'·.¸✮'·.¸☆
Amazing Agnete Skrede (｡◕‿◕)ﾉﾟ°º✫•❥ Thank you

❤. ƸӜƷ ℒƠѵℯ & Hugz ƸӜƷ .❤
 
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The newspaper Dagsavisen Fremtiden has written several good articles about the Norwegian Labour and Welfare Administration's (Nav) horrendous treatment of ME patients.

Today Jane tells her story. She came down with swine flu in 2014 and never recovered. She was diagnosed with CFS/ME in 2015.

In Norway, you receive work assessment allowance for three years if you get ill for a longer period. The idea is to during these three years assess whether or not you will be able to return to work (which is very hard, as medical assessment and treatments often takes much longer). If it is obvious by then that you are too ill to work and that relevant treatments have been tried, you can apply for disability benefits. If the Norwegian Labour and Welfare Administration thinks there are still treatments left to try in order for you to return to work, disability benefits will be denied, and you have to live on social benefits which is next to nothing until the Norwegian Labour and Welfare Administration agrees that you've tried sufficient amount of treatments.

According to the Norwegian Labour and Welfare Administration, CBT is a treatment for ME, so you have to try that before applying for disability benefits.

Jane had a rehabilitation stay for a month in 2015, which included CBT. She's also tried to access additional CBT as this was a demand from the Norwegian Labour and Welfare Administration, but has been rejected four times, because the treatment places don't think she needs it. The Norwegian Labour and Welfare Administration then said if public health service won't offer her the treatment, she needs to try CBT privately. But this is too expensive for her and the Norwegian Labour and Welfare Administration won't agree to guarantee to cover the costs.

She is now taking her case to the National Insurance Court.

Dagsavisen: Jane (43) i paradoksal kamp med Nav: - Jeg har gjort alt de har bedt meg om
google translate: Jane (43) in a paradoxical battle against Nav: - I have done everything they've asked me to do
 
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from OMF email
Cecilia Ekhem Publishes “Weaponless,”
A New Novel About Life with ME/CFS

Swedish Open Medicine Foundation (OMF) supporter Cecilia Ekhem is no stranger to using her pen to bring her experiences with Myalgic Encephalomyelitis / chronic fatigue syndrome (ME / CFS) to life on a page.
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Prior to life with ME/CFS, Cecilia had already published two books in her spare time when she wasn’t working as a business developer.

After she developed ME/CFS, however, her ability to write as she knew it abruptly came to an end. Despite the personal tragedy, Cecilia didn’t give up—with remarkable resilience, she found a way to continue writing within the confines of a cruel disease that has left her mostly bed ridden.

Since the onset of ME/CFS, Cecilia has written poetry that inspires, gaining thousands of followers, and received the Anders Frostenson scholarship for her hymn texts three years in a row.

In June of 2020, Cecilia published “Weaponless,” a novel about “finding your context and awakening the glow of a soul hidden in a limited body” to help raise awareness of ME/CFS and bring comfort and inspiration to other ME/CFS sufferers.

“The title Weaponless is from a poem by the famous Swedish poet Karin Boye. I chose it because life with ME/CFS sometimes feels like entering a war without weapons” Cecilia explains. “The book is written from bed with around five sentences a day as headaches and fatigue don’t allow more writing than that.”

Cecilia’s determination paid off.

“The book has received a warm welcome from many readers, both ill and healthy, young and old,” she says. “A month after the release, around $800 has been raised through book proceeds for OMF-funded research into ME/CFS. There is also information about OMF on the cover.”

OMF sends our gratitude to Cecilia and all those in our community who use their creative talents to help us raise funds and awareness. We are incredibly inspired by all of our supporters that have done and continue to do incredible fundraisers, including publishing books and articles. We are so lucky to have you in our OMF family!

Visit Cecilia’s website to learn more.
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rvallee said:
It's a form of toddlerism, where one's worldview is a tiny bubble centered around themselves. Lacking object permanence, to boot. It's really weird that medicine can't filter out such people
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Very much so! It's sad but not that weird, all you need to get into medical school is essentially good grades, and to not behave as a sociopath during the education. Even if a minority gets accepted through interviews they aren't really scanning for signs of "arrested development". Rather than being filtered out they seem to be drawn in:thumbsdown: Narcissistic Personality Disorder is much more prevalent among medical students than in the general population (approximately 16% compared to 1-3%).
Supposedly the hierarchical structure of medicine is part of the allure.
 
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Anna H said:
Very much so! It's sad but not that weird, all you need to get into medical school is essentially good grades, and to not behave as a sociopath during the education. Even if a minority gets accepted through interviews they aren't really scanning for signs of "arrested development". Rather than being filtered out they seem to be drawn in:thumbsdown: Narcissistic Personality Disorder is much more prevalent among medical students than in the general population (approximately 16% compared to 1-3%).
Supposedly the hierarchical structure of medicine is part of the allure.
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Is there a source for your statement about Narcissistic Personality Disorder?
 
NelliePledge said:
Is there a source for your statement about Narcissistic Personality Disorder?
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It’s from a presentation by Ramani S. Durvasula, PhD, during a free online summit about narcissism last year - "Understanding Narcissism". I don't remember the exact study she was referring to, but I could try to find out.

ETA:
"It is estimated that NPD is present in 0.5% of the general United States population [4] and in 2-16% of those who seek help from a mental health professional. NPD is found in 6% of the forensic population, [5, 6] in 20% of the military population (the actual disorder as well as narcissistic traits), [7, 8, 6] and in 17% of first-year medical students. [9, 6]"

Found it! I got the numbers a bit wrong though, 0,5% in the general (US) population and 17 % in (first year) medical students.

https://emedicine.medscape.com/article/1519417-overview#a5
 
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Today, the Court of Appeal hearing begins about the high-profile case of Richard Lundgren who helped his seriously ill wife to die. The district court sentenced him to 1.5 years in prison for manslaughter, but the verdict was appealed by both sides. Now the defense lawyer Tomas Bodström wants this not to be seen as a criminal act and that his client should be acquitted completely.

https://etidning.allehanda.se/369/Tidningen-Angermanland/329723/2020-09-14/r/4

https://www.tv4play.se/program/nyheterna/13291147

https://www.tv4play.se/program/nyhetsmorgon/13291199
 
Swedish BPS-proponent Jörgen Malmquist wrote a really rubbish opinion piece in Norwegian Dagsavisen the other day, accusing Jørgen Jelstad of fearmongering etc.

Jørgen replies in Dagsavisen today :thumbsup:

«Donald Trump ville ikke høre på Anthony Fauci. Det vil ikke Jörgen Malmquist heller»
En rekke internasjonale fagfolk er bekymret for at langtidssyke etter covid-19 har ME-lignende symptomer. Men det skal vi visst ikke snakke om, mener Jörgen Malmquist.
https://www.dagsavisen.no/fremtiden...et-vil-ikke-jorgen-malmquist-heller-1.1778482

Google Translate, English
"Donald Trump didn't want to listen to Anthony Fauci. Neither does Jörgen Malmquist."
A number of international experts are worried that covid-19 longhaulers are having symptoms that resemble ME. But apparently we're not supposed to talk about that, according to Jörgen Malmquist.
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