News from Scandinavia

mango · Apr 3, 2023

Not specifically ME, but relevant to pwME. Opinion piece on the right to cognitive and communication aids.

Rätten till kognitions- och kommunikationshjälpmedel måste säkerställas
https://www.altinget.se/omsorg/arti...-kommunikationshjalpmedel-maaste-sakerstallas

Auto-translate said:

The right to cognitive and communication aids must be ensured

The National Board of Health and Welfare's national statistics on assistive devices already show that access is unequal across the country, writes the Swedish Speech and Language Therapy Association and the Swedish Association of Occupational Therapists together with a number of patient organisations.
"The right to cognitive and communication aids needs to be ensured," they write.

Cognitive and communication aids can be crucial to maximising independence and participation in society. People who often need support to communicate, remember, plan, structure and solve everyday problems include those with neurological disease or injury, intellectual disability, ADHD and autism.

In the worst case scenario, MDR can lead to people with disabilities being at even greater risk of exclusion than today.

In May 2021, the MDR regulation was introduced throughout the EU for medical devices, which means that the same rules will apply throughout the EU for a certain product area. The introduction of MDR is potentially a step in the right direction to ensure good quality and patient safety, but if the law is not implemented wisely, it risks having the opposite effect. In the worst case scenario, the MDR could lead to persons with disabilities being at even greater risk of exclusion than today. [...]
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Ravn · Apr 4, 2023

BT is one of the larger Danish tabloids. Over the past few months they've been running a series of articles featuring the plight of pwME in Denmark (links to the other articles at the link).

A bit heavy on the psych vs bio argument, which I'm not generally a fan of, but I can see how it would feel highly relevant to a pwME threatened with being committed to a psychiatric hospital.

google-translated extract said:

Julie's doctor threatens forced hospitalization: 'He doesn't believe in the disease'
[...]
Julie Sommer has the disease ME/CFS. A disease that affects the nervous, immune and hormonal systems - and a disease that neither the National Board of Health nor several Danish doctors still recognize as a physical disease.

Last week, Julie Sommer had a visit from one of the latter. Her doctor, Niels Iversen, who runs the Lægerne ved Botanisk Have clinic in Copenhagen on a daily basis.

And that visit ended, according to Julie Sommer, as a living nightmare.

"He threatened to commit me to hospital and emphasized to me that my illness is psychological. It's terrible - and I don't know what to do. I have ME. I am not mentally ill,' writes Julie Sommer.

On an audio recording in BT's possession, doctor Niels Iversen says that he "doesn't believe in ME," just as he declares that the symptoms she describes, such as being painfully hypersensitive to sound and light, are delusions
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https://www.bt.dk/samfund/julies-laege-truer-med-tvangsindlaeggelse-han-tror-ikke-paa-sygdommen

https://www-bt-dk.translate.goog/sa...uto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

Sly Saint · Apr 5, 2023

Rakel fears for her sons’ health, after emergency alerts on mobile phones were introduced – Dagsavisen

Previously, Dagsavisen wrote about Torild Finsæther (64), who has impaired hearing and thus cannot receive an emergency alert that is sent on his mobile phone at night. Single mother Rakel Johansen has the opposite problem; for her, a loud and unexpected noise is the last thing she wants to enter the house.

Rakel deliberately moved from the center of Skien to a more rural area of the city because of the health of her two sons.

– It’s almost like I’m considering putting up a stop sign outside the house, says Rakel.

When both boys contracted the kissing disease at the ages of three and five, it turned their lives upside down. The boys never recovered and both were diagnosed with ME, which meant that Rakel is home from her teaching job with childcare allowance so that she can look after her sons. At home, she implemented several measures.

The house had to be soundproofed, the light in the house was dimmed. She got rid of the kettle and everything that makes noise. Christmas dinners and other social gatherings had to be stopped.

The most important thing for Rachel was to protect her sons. If the boys are exposed to external stimuli that they do not have the energy to handle, they can get “postexertional malaise” (PEM) (exertional malaise/worsening of symptoms).

Symptoms may worsen immediately after an activity, or with a delay of hours or days.

– The sickest sufferers experience worsening symptoms even with the slightest physical, social or mental activity, such as talking or eating, she says.
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https://norway.postsen.com/trends/1...bile-phones-were-introduced-–-Dagsavisen.html

Kalliope · Apr 8, 2023

The Norwegian public broadcaster NRK writes about Iselin who suffers from severe ME and receives help by an assistant who makes her food and clean her place. They had made plans for which days the assistant should come during the Easter and had gotten approval for this. But suddenly the municipality changed its mind and decided Iselin would not get assistance after all during the holiday, with less than 24 hours notice.

This led to a lot of sudden administration work for Iselin and she says she'll be bed bound now for the Easter. She believes the reason for the decision is the extra pay and expenses for help during holidays. Schei from the Norwegian ME Association comments and says if a person is sick, then that person is just as sick also during holidays.

NRK ME-syke Iselin får ikke hjelp på helligdager - blir sengeliggende i påsken
google translation: Iselin, who suffers from ME, doesn't get help on public holidays - becomes bedridden during Easter

Kalliope · Apr 8, 2023

Opinion piece from 17 year old Dina Holst-Larsen whose mother has severe ME. She describes very well the lack of support both to her mother but also to the rest of the family, who are suffering as well.

Her uncle was diagnosed with cancer, and she compares the help and support he has been given with what is given to ME patients and their families.

She urges the Norwegian health care system to open it's eyes and get moving!

TV2 Jeg kunne ønske mamma hadde en dødelig sykdom
google translation: I wish mummy had a deadly disease

NelliePledge · Apr 8, 2023

Kalliope said: ↑

Opinion piece from 17 year old Dina Holst-Larsen whose mother has severe ME. She describes very well the lack of support both to her mother but also to the rest of the family, who are suffering as well.

Her uncle was diagnosed with cancer, and she compares the help and support he has been given with what is given to ME patients and their families.

She urges the Norwegian health care system to open it's eyes and get moving!

TV2 Jeg kunne ønske mamma hadde en dødelig sykdom
google translation: I wish mummy had a deadly disease
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Sorry for Dina and her mum. Dina has done a brilliant article.

Midnattsol · Apr 10, 2023

Not in the news, but a friend of mine told me of another friend they have with ME that "nearly died because instead of getting help in the home they [the muncipality] wanted to have them institutionalized".

mango · Apr 11, 2023

Midnattsol said: ↑

Not in the news, but a friend of mine told me of another friend they have with ME that "nearly died because instead of getting help in the home they [the muncipality] wanted to have them institutionalized".
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mango · Apr 11, 2023

Swedish activist/doctor Lisa Norén was live tweeting (in Swedish) while watching the WHO webinar on long covid research today. Very informative thread here:

https://twitter.com/user/status/1645732774983221251

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mango · Apr 16, 2023

Karin Thunberg: Jag minns hennes vrede över okunskapen
https://www.svd.se/a/jlgAkn/karin-thunberg-ingen-kan-forneka-postcovid-och-me-sjuka

Auto-translate said:

Karin Thunberg: I remember her anger at the ignorance

Both testify to not being believed. Not in the beginning when they could hardly do anything. Now more and more people are talking about the similarities between ME and post-covid. But there is still no cure, only relief.

She describes the fever as an "evil spirit" that consumes her. "She's my friend and it's been over a year since she fell ill with COVID-19. She's still not well. Nowadays, of course, she can be fever-free for several days in a row, but then ... usually after a day when she feels better and has made too much effort ... she goes to bed.

Must rest alone in a quiet, dark room. Wait for the fever to go away. Sometimes she thinks that a drug addict with a headache feels the same agony. Because when the "evil spirit" wakes up, she says, it is as if her "self" disappears. She has never experienced this before, not even when she was seriously ill with diphtheria [...]
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"Karin Alvtegen no longer dares to hope for recovery. The setbacks are too painful.

But she still sees hope for the future:

- No one can be so stupid as to say that ME and post-covid do not exist."
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ETA Karin Alvtegen Facebook post about the article:

https://www.facebook.com/KarinAlvte...ibBx3znBC9SumKGEcF6fDqcQLURrghnarcy6STKacpRul
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Sean · Apr 15, 2023

"No one can be so stupid as to say that ME and post-covid do not exist."

It isn't stupidity that is driving the denial.

mango · Apr 16, 2023

Utförsäkrade uppmanas gå samman mot Försäkringskassan
https://www.dagensarena.se/innehall/utforsakrade-uppmanas-ga-samman-mot-forsakringskassan/

[Sick people who have had their benefits withdrawn after the 180-day limit] urged to join forces against the Social Security Agency

Many people with exhaustion disorder or other mental health problems continue to be declared [ineligible for benefits after 180 days] and fall between the cracks. Lawyer Jimmy Laine is now calling on those who have been wrongly excluded from the insurance system to jointly claim damages from the Social Insurance Agency.

- "My hope is that these people will get the redress they are entitled to," says Jimmy Laine.

Last autumn, the Supreme Administrative Court ruled that objective examination findings should not be a requirement for a patient to be granted sickness benefit from the Social Insurance Agency. This requirement has meant that thousands, if not tens of thousands, of patients with psychiatric illnesses such as exhaustion disorder, anxiety or depression have been denied sickness benefit because it has not been possible for the doctor to make such findings. [...]

New justifications for rejection and withdrawal of benefits

It is not only about people who have been excluded from insurance due to the lack of examination findings in the medical certificate, but also groups who have undergone an activity capacity assessment (AFU) and subsequently had their decision changed or rejected.

- Patients suffering from mental illness or a diagnosis of ME/CFS may have difficulty completing the tests. There is a great deal of stress before and during the tests and many become bedridden for several days afterwards. A large number have actually become worse, which even the doctors have been able to confirm," says Jimmy Laine.

He says that the Swedish Social Insurance Agency does not have the authority to demand an AFU when there is a risk of deterioration, but they threaten to withdraw sickness benefit, which leaves patients with a difficult decision. [...]

Jimmy Laine is very critical of the AFU as a method of measuring the activity capacity of a person with, for example, exhaustion disorder or ME/CFS. "A major problem with the study is that it only measures the activity capacity for the moment, but not over time.

- Some days may be better than others, and even a sick person may be able to put together an IKEA shelf or sort the mail into boxes for 20 minutes, without disturbing stimuli and in a customised environment. This does not mean that the person has demonstrated a work capacity that can be used in the labour market over time," says Jimmy Laine. [...]

Jimmy Laine's hope with the class action is that the people affected by erroneous decisions from the Swedish Social Insurance Agency will get the redress they are entitled to.

- The hope is also that the Swedish Social Insurance Agency will review its processing and make more objective and legally secure assessments, and ensure that there is a basis for the decisions made, says Jimmy Laine.
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In the text above I have translated the Swedish term "utförsäkrad" as "having ones benefits withdrawn after the 180-day limit". Is there a better English word for it?

Exhaustion disorder is the diagnostic name for burnout in Sweden. It is a psychiatric diagnosis, and it is separate from ME/CFS.

Re: "many become bedridden for several days" after AFU. I personally know several pwME who suffered major permanent deterioration after AFU, and their benefits were still withdrawn.

mango · Apr 16, 2023

mango said: ↑

Utförsäkrade uppmanas gå samman mot Försäkringskassan
https://www.dagensarena.se/innehall/utforsakrade-uppmanas-ga-samman-mot-forsakringskassan/
Click to expand...

More about this, an article in the journal of the Swedish Medical Association:

Patienter går samman för att kräva skadestånd av Försäkringskassan
https://lakartidningen.se/aktuellt/...or-att-krava-skadestand-av-forsakringskassan/

Auto-translate said:

Patients join forces to claim damages from the Social Security Agency

[...] Now [Jimmy Laine's] firm is collecting information for a possible class action lawsuit against the Swedish Social Insurance Agency demanding redress in the form of damages. They are looking for people who have been rejected due to a lack of objective examination findings or those who have been forced to undergo work capacity assessments despite the fact that it has worsened their health. Mr Laine does not know exactly how many people have so far shown interest in participating in the class action, but says that it is in the hundreds.

- 'There are so many cases like this and as a representative I get very frustrated. I ask myself why so many people are declared [ineligible for benefits after 180 days] despite the fact that the healthcare system assesses that there is no work capacity whatsoever, regardless of the work tasks. You can't just turn a blind eye to the health service's assessment. I can't interpret it in any other way than that they just want to reduce the number of sickness benefits," he says.

Exactly how to proceed, however, is currently unclear.

- "In any case, we will submit a request for damages directly to the Social Insurance Agency. If we are refused, we hope to be able to pursue the matter in the district court," says Jimmy Laine.

Nor can he say how much they plan to ask for, as it depends on how many people will ultimately proceed with the class action.
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RedFox · Apr 19, 2023

mango said: ↑

Utförsäkrade uppmanas gå samman mot Försäkringskassan
In the text above I have translated the Swedish term "utförsäkrad" as "having ones benefits withdrawn after the 180-day limit". Is there a better English word for it?
Click to expand...

Long-term disability?

mango · Apr 20, 2023

RedFox said: ↑

Long-term disability?
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Thanks, yes it has to do with long-term disability.

"Utförsäkrad" literally means "out insured". It refers to the 180-day rule that was first introduced in 2008.

(During the first 90 days, you are entitled to sickness benefit if you are considered unable to do your normal work. After 90 days, you are entitled to sickness benefit if you are considered unable to do your normal work or any other work that your employer can offer you.)

After 180 days you are only entitled to sickness benefit if you are considered unable to work in any position at all on the so called common employment market (including hypothetical, imaginary jobs that don't exist in reality...). This assessment is done with no regard for your age, education, geographical location etc.

In other words, it's when the Swedish Social Insurance Agency decides that you are fit for work and withdraws your sickness benefit, regardless of your actual state of health and functional ability, and regardless of what your doctors' certificates say...

NelliePledge · Apr 20, 2023

Eligibility has expired.

mango · Apr 20, 2023

NelliePledge said: ↑

Eligibility has expired.
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I like that! Thank you

mango · Apr 20, 2023

(Not specifically ME, but relevant to pwME.)

The first ever official Swedish guideline for home health- and medical care has been published by The National Board of Health and Welfare.

Hälso- och sjukvård i hemmet – personcentrerad vård och rehabilitering
https://www.socialstyrelsen.se/kuns...d-och-nara-vard/halso--och-sjukvard-i-hemmet/

Auto-translate said:

Home health care -- person-centred care and rehabilitation

Health care in the home is an important part of the development of good and close care. The National Board of Health and Welfare's support material on home healthcare can be used by organisations that want to develop their working methods.

More and more people are receiving healthcare at home. The patients who receive care expect it to be designed according to their individual needs and wishes. They also expect that the organisations and professionals providing the care have coordinated their efforts.

Home healthcare affects the entire healthcare system. It is therefore important that municipalities, regions [the local governments responsible for healthcare etc] and private healthcare providers continue to develop their activities in collaboration, so that home healthcare is safe and person-centred. Collaborative development is also a prerequisite for continuing the transition to close care.

[...] The knowledge support contains examples of working methods, models, solutions and procedures that can contribute to good care for patients receiving healthcare at home. [...]

The knowledge support is primarily aimed at policy makers. It can inspire those responsible for the management and resourcing of primary care and specialised care, including rehabilitation, within regional, municipal or private healthcare providers. Decision-makers can be civil servants, managers and leaders at different levels.

The knowledge support can also inspire healthcare professionals and those involved in development and quality work in the field.
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mango · Apr 22, 2023

(Not ME) Swedish icehockey player Lukas Bengtsson talks openly about living with POTS (was very ill for a year but better now, needs compression garments; has a great team helping him through physiotherapy, chiropractic and naprapathic medicine; needs extra time for recovery and rest, etc).

Lukas Bengtsson berättar om sjukdomen som kunde ha kostat honom drömmen

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NelliePledge · Apr 22, 2023

Kristian Borg sniffing a faint aroma of coffee on waking

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