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
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. 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
Rakel fears for her sons’ health, after emergency alerts on mobile phones were introduced – Dagsavisen https://norway.postsen.com/trends/1...bile-phones-were-introduced-–-Dagsavisen.html
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
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
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".
Swedish activist/doctor Lisa Norén was live tweeting (in Swedish) while watching the WHO webinar on long covid research today. Very informative thread here:
Karin Thunberg: Jag minns hennes vrede över okunskapen https://www.svd.se/a/jlgAkn/karin-thunberg-ingen-kan-forneka-postcovid-och-me-sjuka ETA Karin Alvtegen Facebook post about the article:
"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.
Utförsäkrade uppmanas gå samman mot Försäkringskassan https://www.dagensarena.se/innehall/utforsakrade-uppmanas-ga-samman-mot-forsakringskassan/ 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.
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/
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...
(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/
(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
