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News from Scandinavia

Discussion in 'Regional news' started by Kalliope, Nov 2, 2017.

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Page 100 of 112

mango Senior Member (Voting Rights)

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Press release about a new Swedish non-fiction book about recovering from ME.

(Sharing for informational purposes only, as I haven't read it myself.)

Att övervinna kroniskt trötthetssyndrom: "Svarta hål och körsbärsblom" av Karin Tuvgren
https://www.mynewsdesk.com/se/lava-...l-och-koersbaersblom-av-karin-tuvgren-3336199

Auto-translate said:

Overcoming chronic fatigue syndrome: ‘Black holes and cherry blossoms’ by Karin Tuvgren

On 19 September, the book ‘Black holes and cherry blossoms’ by author Karin Tuvgren will be published by Lava.

‘Black holes and cherry blossoms’ by Karin Tuvgren is a deeply personal story about the author's struggle with chronic fatigue syndrome. With raw honesty, Tuvgren describes how her life turned into a daily struggle where simple activities became overwhelming. She describes an existence characterised by irrational fears, emotional trials and an everyday life filled with obstacles that seemed impossible to overcome.

The book highlights the author's experiences with a medical system that could not offer concrete answers, and the question of how to get well when the doctor is without solutions. Tuvgren shares his journey towards finding answers and overcoming a reality where every day was a battle against invisible enemies.

‘Black Hole and Cherry Blossom’ is not only a story about illness but also about hope and recovery. It is about finding light in the darkness and the strength to fight for days filled with cherry blossoms instead of black holes. Throughout the story, Tuvgren offers an informative and inspiring insight into different paths back to a meaningful life.

About the author

Karin Tuvgren is an engineer and worked in the IT industry before her life was turned upside down by a long illness. Now she is a student at Lund University trying to find a way to help others with similar health problems. Karin lives in Skåne with her partner. Their home is shared with well-worn hiking boots and a large collection of choral music.
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Looks like she believes a change of diet made her recover, according to this Facebook post by the author.

mango, Sep 18, 2024

#1981

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Trish Moderator Staff Member

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I don't respond well to people who claim a cure but you have to buy the book to find out what it is.

Trish, Sep 18, 2024

#1982

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Solstice Senior Member (Voting Rights)

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Yan said: ↑

And this is how I got a diagnosis for severe depression. My doctor agreed that I'm not depressed but to apply for disability benefits it would be good to do it with a depression diagnosis. Well, my application got rejected twice, complaints got rejected and in the end I'm still diagnosed with depression! Great system.
Click to expand...

My Dutch lawyer also told me it was easier to get disability benefits with a psychiatric diagnosis. I was lucky to have heard some cautionary tales and I didn't want to have that diagnosis hovering over me for the rest of my life. These systems aren't equipped to handle anything than the run-of-the-mill disabilities in my experience, I also got rejected twice.

Solstice, Sep 19, 2024

#1983

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mango Senior Member (Voting Rights)

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(Not ME) A Swedish article on functional neurological disorder, FND. Not a recommendation.

Skidtalangen Ebba kunde inte gå ordentligt – nu har hon fått svar
https://www.dn.se/sport/skidtalangen-ebba-kunde-inte-ga-ordentligt-nu-har-hon-fatt-svar/

An older article about the same person, published in December 2023:

Skidtalangen Ebba Larsson vaknade en dag utan att kunna gå ordentligt
https://www.dn.se/sport/skidtalangen-ebba-larsson-vaknade-en-dag-utan-att-kunna-ga-ordentligt/

mango, Sep 22, 2024

#1984

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mango Senior Member (Voting Rights)

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Finland:

Terveydenhuollon ammattilaisten tietämystä kroonisen väsymysoireyhtymän (ME/CFS) ja long covidin hoidosta ja kuntoutuksesta tulee lisätä
https://www.mediuutiset.fi/debatti/...e-lisata/1149ce0f-8847-4585-a2ff-8a29d15fdb6d

Auto-translate said:

The knowledge of healthcare professionals on the treatment and rehabilitation of chronic fatigue syndrome (ME/CFS) and long covid needs to be increased

Recognizing the symptoms of ME/CFS and long covid and investigating the causes are often lacking, which has led to underdiagnosis, inadequate care, and a poorer prognosis. In addition to the treatment is often negatively affected by the stigma faced by patients, writes over 60 social and healthcare professionals in their perspective article.

Efforts must be made to develop the treatment and rehabilitation of patients with chronic fatigue syndrome (ME/CFS) and long covid, the training of healthcare professionals and the implementation of treatment recommendations.

Chronic fatigue syndrome (ME/CFS) and long-lasting covid-19 (long covid) are long-term physical diseases that significantly impair functional and work capacity and quality of life, affecting several organs and organ systems (1–16).

According to current research data, the pathophysiology of ME/CFS and long covid includes disturbances in the regulation of the immune system, cardiovascular and neurological problems, as well as gastrointestinal, metabolic and mitochondrial dysfunctions (7, 9–12).

The symptoms of ME/CFS and long covid are remarkably similar, and some people with long covid meet the diagnostic criteria for ME/CFS (3, 7, 8, 11–13). The disease picture is diverse and the set of symptoms and the severity of the disease vary individually.

The occurrence of phases of improvement and exacerbation is common. Disadvantages of functional capacity vary depending on which parts of the body the disease affects and how serious the dysfunctions caused by it are. (3,4,7,8,10-12)

The most important symptom of ME/CFS and long covid is PEM/PESE (post-exertional malaise/post-exertional symptom exacerbation), i.e. a significant worsening of symptoms and impairment of functioning even after little physical, cognitive, social or emotional activity. The PEM/PESE symptom occurs in all ME/CFS and the vast majority of long covid patients. (1, 3–8, 17, 19–21) PEM/PESE cannot be explained by deconditioning, i.e. poor physical condition due to inactivity (11, 23, 24).

Pacing is the main recommended method

Numerous recommendations have been published for the treatment of ME/CFS and long covid, which are consistent in content and based on up-to-date scientific evidence. The recommendations emphasize the importance of a long-term treatment relationship and patient-centered, individual and symptomatic treatment, as well as the fact that the treatment must not cause harm (18, 17–22).

With the help of multiprofessional treatment and rehabilitation, functional capacity can be supported and symptoms alleviated, although curative treatment is currently unknown (1, 3–7, 17, 19–21). Due to the consistency of the disease picture, it is recommended to use the methods recommended for the treatment of ME/CFS in the treatment of people with long covid (5, 7, 19). PEM/PESE is the most important symptom to consider in treatment and rehabilitation. The most recommended method is pacing, i.e. the rhythm of activity and rest adapted to the symptoms. The goal of pacing is to avoid or minimize the occurrence of PEM/PESE symptoms, to support symptom control and the experience of standing, and to optimize functional capacity (1, 3–7, 17, 19–21).

Methods based on deconditioning or avoidance behavior are not recommended

Key treatment recommendations do not recommend methods based on theories that patients' symptoms are caused by deconditioning, harmful beliefs, avoidance behavior, or fear of post-activity symptoms (1, 3, 4, 17, 21, 22).

A gradual increase in exercise using the GET method (graded exercise therapy) or other ascending methods is not recommended for patients with PEM/PESE symptoms, but the importance of minimizing the PEM/PESE symptom by means of pacing adapted to the symptoms is emphasized.

Moderate uphill training may be suitable for patients without PEM/PESE symptoms (1–7, 17, 19–22).

The recommendations emphasize that the psychosocial interventions offered to this group of patients do not assume that harmful thoughts or behaviors are the underlying cause of these illnesses. Instead, it is recognized that thoughts, feelings, behavior and physiological factors interact with each other (3, 17).

Cognitive behavioral therapy (CBT) or other methods should not be offered as curative treatment, but to support adaptation to the illness (1–5, 17, 19–22).

Psychological support must be available, as being seriously ill is often mentally taxing (1–5, 7, 17–21).
Investment should be made in the implementation of treatment recommendations and training

Research has progressed significantly in recent years, but healthcare professionals' knowledge of these diseases is still insufficient (1, 7, 12, 21, 26). Recognizing the symptoms and finding out their causes are often insufficient, which has led to underdiagnosis, insufficient treatment and a worse prognosis (1, 10, 11, 13, 21, 26). In addition, treatment is often negatively affected by the stigma faced by patients (8, 15, 17, 21, 26).

Efforts must be made to develop the treatment and rehabilitation of patients with ME/CFS and long covid, the training of healthcare professionals and the implementation of treatment recommendations. Research funding must be increased and international cooperation and patient participation must be promoted. Eliminating the stigma is important, and it should be ensured that patients receive treatment according to the recommendations. These diseases should be taken seriously in all social and healthcare sectors (4, 12, 16, 17).
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mango, Sep 28, 2024

#1985

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Sean Moderator Staff Member

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The most recommended method is pacing, i.e. the rhythm of activity and rest adapted to the symptoms. The goal of pacing is to avoid or minimize the occurrence of PEM/PESE symptoms, to support symptom control and the experience of standing, and to optimize functional capacity (1, 3–7, 17, 19–21).

Methods based on deconditioning or avoidance behavior are not recommended

Key treatment recommendations do not recommend methods based on theories that patients' symptoms are caused by deconditioning, harmful beliefs, avoidance behavior, or fear of post-activity symptoms (1, 3, 4, 17, 21, 22).

A gradual increase in exercise using the GET method (graded exercise therapy) or other ascending methods is not recommended for patients with PEM/PESE symptoms, but the importance of minimizing the PEM/PESE symptom by means of pacing adapted to the symptoms is emphasized.

Moderate uphill training may be suitable for patients without PEM/PESE symptoms (1–7, 17, 19–22).

The recommendations emphasize that the psychosocial interventions offered to this group of patients do not assume that harmful thoughts or behaviors are the underlying cause of these illnesses. Instead, it is recognized that thoughts, feelings, behavior and physiological factors interact with each other (3, 17).

Cognitive behavioral therapy (CBT) or other methods should not be offered as curative treatment, but to support adaptation to the illness (1–5, 17, 19–22).

Psychological support must be available, as being seriously ill is often mentally taxing (1–5, 7, 17–21).
Click to expand...

Good start.

Sean, Sep 28, 2024

#1986

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rvallee Senior Member (Voting Rights)

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Sean said: ↑

Good start.
Click to expand...

If only they could let go of the multidisciplinary rehabilitation now. Having people go to multiple exhausting appointments to help them manage their energy makes as much sense as having people on the verge of destitution pay hundreds of dollars to attend classes that will tell them how to manage their budget. Most patients have to teach this stuff to most health care professionals they encounter, how does it make sense that they will teach us what we tell them but understand far less, and are still unable to grasp?!

The key concept remains convalescence. It's not an active process. It's a supportive one. They need to let it go. And if it wasn't for Disney being so damn litigious it'd make a great campaign against the psychosocial ideology. No mention of anything beyond that they need to Let it go. Nothing else said about the psychologization, just Let it go.

rvallee, Sep 28, 2024

#1987

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Yan Established Member (Voting Rights)

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mango said: ↑

Finland:

Terveydenhuollon ammattilaisten tietämystä kroonisen väsymysoireyhtymän (ME/CFS) ja long covidin hoidosta ja kuntoutuksesta tulee lisätä
https://www.mediuutiset.fi/debatti/...e-lisata/1149ce0f-8847-4585-a2ff-8a29d15fdb6d
Click to expand...

Even though this is written as opinion piece, it's still interesting because it has over 60 signatures on it. Most by physiotherapists, then a few nurses. Probably organized by Hanna Markkula who is a physiotherapist and has been very active in recent years promoting information about ME/CFS and Long Covid among other things. Also just about the only person that has offered real help to me in form of advice.

Yan, Sep 28, 2024

#1988

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Sean Moderator Staff Member

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rvallee said: ↑

The key concept remains convalescence. It's not an active process. It's a supportive one.
Click to expand...

The best way to clear muddied waters is to simply stop stirring them up.

Sean, Sep 29, 2024

#1989

rvallee, NelliePledge, Peter Trewhitt and 1 other person like this.
mango Senior Member (Voting Rights)

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October is international dysautonomia awaress month. Dysautonomi Sverige is running an awareness campaign this year (in Swedish), and they usually publish very high-quality science based content, so I would like to recommend those interested to follow them on social media. They are well-informed about ME as well.

https://www.instagram.com/dysautonomisverige/

https://www.facebook.com/DysautonomiSverige

mango, Oct 1, 2024

#1990

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mango Senior Member (Voting Rights)

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RME Stockholm organised a talk on 30 September, to teach healthcare professionals at Södertälje Hospital about ME. Among the people giving presentations were a person with ME, the chairperson of RME Stockholm, Björn Bragée and a pain physician. Around 40 guests attended the talk. The talk (or parts of it?) was recorded, and is available to watch through the link below.

https://rme.nu/kunskapsspridning-om-me-pa-sodertalje-sjukhus-30-9/

mango, Oct 5, 2024

#1991

Peter Trewhitt, Dolphin, Kalliope and 1 other person like this.
mango Senior Member (Voting Rights)

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Paywalled article in a local newspaper.

Märgben, köttbars och kycklingknäcke: Dieten blev Jennies räddning
https://www.borlangetidning.se/2024...-kycklingknacke-dieten-blev-jennies-raddning/

Marrow bones, meat bars and chicken nuggets: the diet saved Jennie

For years, Jennie Ask was isolated in bed. She was unable to sit up. A visit to the loo was a project. The rescue was a completely different diet. Now her menu includes marrow bones, meat bars, pork rind and chicken nuggets.

- ‘I'm probably not like most people, but there's no alternative for me,’ says Jennie.

Borlänge resident Jennie Ask, 44, starts her days with eggs. For lunch, she eats around 300 grams of meat and the dinner menu looks the same as lunch. [...]
Click to expand...

mango, Oct 8, 2024

#1992

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mango Senior Member (Voting Rights)

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An article written by Björn Bragée, in an online membership magazine for serior citizens.

Tröttare än vanligt efter covid?
https://www.senioren.se/expert/trottare-an-vanligt-efter-covid/

Auto-translate said:

More tired than usual after covid?

Post-covid can come as an unwelcome surprise after a viral infection. Have you had covid and not recovered your strength but become brain tired? Or had a low-grade fever and memory problems for months after the infection? Then it's time to seek medical attention!

By Björn Bragée

A few months after we realised that COVID-19 was a pandemic, I wrote an article in Dagens Medicin predicting a subsequent tsunami of fatigue syndrome. Since we were investigating and treating patients with ME/CFS or ‘chronic fatigue syndrome’ at the time, we knew the story well. Previous pandemics had resulted in a lot of people being knocked out.

On the wall above my bed in the village in Dalarna where I spent 25 midsummers is a heartbreaking photo from 1918 of 25-year-old Augusta, then recently deceased. She had just married the boy next door and was heavily pregnant, but had been panting for a long time in the ‘Spanish’ flu pandemic. She now lies still, dressed in white.
-I won't give up until the baby dies, she had told her mother.
And so it was. She shared this fate with 100 million people around the world, mostly healthy young people. Of those who survived, one in twenty suffered ‘severe debilitation’.

Other pandemics had the same aftermath. Many will remember the ‘Asian’ flu of the 1960s. ‘Post-infectious asthenia’ became something medical candidates would learn as a subsequent diagnosis. Many smaller epidemic outbreaks, such as in Iceland with the ‘Akureyri flu’, eventually led to the diagnostic name ME/CFS, ‘chronic fatigue syndrome’. The symptoms are the same as post-covid. Three million people have contracted COVID in Sweden and with the rule of thumb - one in twenty - there may be over a hundred thousand who have experienced some degree of post-covid fatigue.

Post-covid

The World Health Organisation (WHO) defines post-covid as follows:

‘Post-covid is found in people with a history of probable or definite SARS-CoV-2 infection, where symptoms are found three months after infection, have lasted for at least two months and cannot be explained by an alternative diagnosis. Common symptoms include, among others, fatigue, difficulty breathing, impaired thinking, generally affecting daily functioning. Symptoms may be new after initial recovery from acute COVID-19 or may have persisted from the initial phase of the disease. Symptoms may also vary or recur over time.’

Patients object to the word ‘tired’ - the term ‘fatigue’ may better describe the paralysing feeling and incapacity where every little task can mean days on the couch. Even children or those with mild infections can suffer. Of course, there are degrees of hell, and some people cope well with milder symptoms.

But help is available. Mainly rehabilitation in primary care - and referral is not required. Specialised rehabilitation can also be important. For respiratory problems, there are effective techniques that relieve, for pain there are others, and knowledge from rehab often promotes health better than pills.

Many doctors are researching the condition. The consensus is that rest is necessary and that careless exercise can be harmful. We contribute in one corner. Colleagues from Linköping University studied with us 100 patients at my clinic with ME/CFS, where we showed that it may be a matter of ‘dormant viruses’ after previous infections that are awakened by covid, i.e. you get a kind of double infection hit.

Finally, a health trick: Do you recognise these symptoms? Rest for fifteen minutes between exertions with your eyes closed and stomach breathing. Google ‘belly breathing’ and you'll easily learn.
Click to expand...

mango, Oct 8, 2024

#1993

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Kalliope Senior Member (Voting Rights)

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mango said: ↑

An article written by Björn Bragée, in an online membership magazine for serior citizens.

Tröttare än vanligt efter covid?
https://www.senioren.se/expert/trottare-an-vanligt-efter-covid/
Click to expand...

Thanks for sharing, @mango

I thought this was a very good article where he points back to history and shows that this is not at all a new phenomenon. But then he manages to imply that help is in rehabilitation, without a word on pacing or on PEM and the importance of not triggering it.

Kalliope, Oct 8, 2024

#1994

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mango Senior Member (Voting Rights)

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mango said: ↑

RME: Konferens 2024
https://rme.nu/aktivitet/konferens-2024/

Date: 9 October 2024
Registration deadline: 5 October 2024
Click to expand...

This conference started today.

RME says on their Facebook page that there are about 100 people attending in person and 600 watching online.

mango, Oct 9, 2024

#1995

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mango Senior Member (Voting Rights)

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A news article today about the fact that more and more courts are letting AI do the job of masking sensitive information in judgments and preliminary investigations. With the Swedish National Courts Administration's own tool, "fewer errors will be made and the work will go faster".

Interestingly ME/CFS is one of the triggers mentioned on this fairly short list of words. The word "diagnosis" is also on the trigger list, but very few other diagnoses (only epilepsy, eating disorders and whiplash).

Så ska AI hjälpa till att maska uppgifter från domstolarna
https://www.svt.se/nyheter/lokalt/j...lpa-till-att-maska-uppgifter-fran-domstolarna

mango, Oct 13, 2024

#1996

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mango Senior Member (Voting Rights)

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An Icelandic documentary about ME.

https://www.ruv.is/sjonvarp/spila/me-sjukdomurinn-ormognun-uti-a-jadri/33851/a2qg5h

mango, Oct 14, 2024

#1997

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mango Senior Member (Voting Rights)

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mango said: ↑

RME: Konferens 2024
https://rme.nu/aktivitet/konferens-2024/

Date: 9 October 2024
Registration deadline: 5 October 2024
Click to expand...

Recorded talks and a panel discussion from this conference are now available on RME's YouTube channel (in English).

Jonas Bergquist, David Systrom, Artur Fedorowski, Ingrid Gurvin Rekeland, Suzanne Vernon, Resia Pretorius.

https://www.youtube.com/@rmesverige1475

Last edited: Oct 18, 2024

mango, Oct 18, 2024

#1998

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mango Senior Member (Voting Rights)

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Paywalled article in a local newspaper:

Maja, 20, lever sitt liv i en säng – blev aldrig frisk efter covid
https://www.avestatidning.com/2024-...-liv-i-en-sang-blev-aldrig-frisk-efter-covid/

Auto-translate said:

Maja, 20, lives her life in a bed - never recovered from covid

Maja Westerlund, 20, lives her life in a bed. She neither watches TV nor uses her mobile phone. Flashing headaches and lack of energy have characterised her life for the past two years.

- ‘You think health care is supposed to be there for you, but it's been just the opposite,’ she says.

Maja's story is about struggling to get the right care.
Click to expand...

mango, Oct 19, 2024

#1999

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mango Senior Member (Voting Rights)

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mango said: ↑

Paywalled article in a local newspaper:

Maja, 20, lever sitt liv i en säng – blev aldrig frisk efter covid
https://www.avestatidning.com/2024-...-liv-i-en-sang-blev-aldrig-frisk-efter-covid/
Click to expand...

This article was apparently the first in a whole series of articles about Maja. Still paywalled, unfortunately. 3 articles have been published so far, several more to come:
https://www.avestatidning.com/story/a4897877-dade-4ffe-9b2a-e69392b81d8b?pageSlug=fallet-maja

Experten om postcovid: ”Svårt att få rätt vård”
https://www.avestatidning.com/2024-10-18/experten-om-postcovid-svart-att-fa-ratt-vard/

Auto-translate said:

Expert on post-covid: ‘Difficult to get the right care’

The concept of post-covid has strong scientific support, according to researcher Judith Bruchfeld. But with a lack of knowledge in primary care, it has been difficult for patients like Maja Westerlund to get the right care.
- ‘There should be a chain of care with the possibility of referral to specialised care for the more difficult cases,’ she says.
Click to expand...

mango, Oct 20, 2024

#2000

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