The Swedish Covid Association has published a hugely useful and really important document (21 pages, .pdf) about patient rights, which also incluces some tips about how to best prepare yourself before an appointment: Dina rättigheter som patient https://covidforeningen.se/vard-och-stod/dina-rattigheter-som-patient/ RME, the Swedish ME Association, has published a slightly edited copy of the Covid Association's document on their own website.
I have received a response to my open letter from RME. It can be read in the comments to the open letter on my blog. Google translated link: https://mitteremitage-wordpress-com..._tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp#comments In short, one could say that they do not address my criticism but talk about other things. Therefore, I chose to respond as follows: ”Hello and thank you for your comment. My criticism of your debate article follows two tracks. One concerns my belief that it is careless for you (and Altinget) to draw simplified conclusions about which ME patients take their own lives (I do not question that this happens nor that we need to talk about it). The other track concerns the fact that you seem to completely overlook the very problematic national guidelines from the National Board of Health and Welfare and the risks that this entails if the National Board is made responsible for a national knowledge center, to further educate the healthcare sector, or to establish a patient register. None of this is addressed in your response.”
News article in the journal of the Swedish Medical Association, about the Swedish Covid Association's complaint to the Parliamentary Ombudsmen against the National Board of Health and Welfare: Socialstyrelsen JO-anmäls för brister i kunskapsstödet om postcovid https://lakartidningen.se/aktuellt/...ls-for-brister-i-kunskapsstodet-om-postcovid/
(Not specifically about ME, but relevant to pwME.) This petition is a protest against the Swedish government's proposal to reduce the high-cost protection for medication, adressed to the Minister for Health Care Acko Ankarberg Johansson. Försämra inte högkostnadsskyddet för läkemedel https://www.mittskifte.org/petitions/forsamra-inte-hogkostnadsskyddet-for-lakemedel The petition is being shared widely by the patient organisation Neuroförbundet (for everyone who lives with a neurological diagnosis, including ME) and many other major national patient organisations. It has 8 053 signatures at the moment. Learn more about the high-cost protection here: https://www.ehalsomyndigheten.se/languages/english/high-cost-protection/ Sign the petition: https://www.mittskifte.org/petitions/forsamra-inte-hogkostnadsskyddet-for-lakemedel For reference, 900 SEK is currently equal to approx 66 GBP, 79 EUR or 81 USD.
News segment on the radio (in Swedish, 2 minutes) and short written article about the Swedish Covid Association's complaint to the Parliamentary Ombudsmen against the National Board of Health and Welfare. Svenska Covidföreningen JO-anmäler Socialstyrelsen https://www.sverigesradio.se/artikel/svenska-covidforeningen-jo-anmaler-socialstyrelsen
Saw this on reddit. The pseudoscience scam industry just keeps growing, enabled both by misinformation on social media and the health care industry. Long-term disabled person discharged after fourteen days Kristine is back at work after her insurance company purchased a new treatment developed by Norwegian professionals https://www-nrk-no.translate.goog/v...l=auto&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp
There's a little recap here about the psychology professor Kvale whose treatment this is about. The treatment is originally an intensive version of CBT for OCD and anxiety. https://www.s4me.info/threads/professor-gerd-kvale-on-long-covid.34221/ There are some papers on the forum from her, for instance this thread about a study on mindfulness as curative treatment for ME/CFS which she co-authored: https://www.s4me.info/threads/a-4-d...-one-year-follow-up-2018-stubhaug-et-al.7230/ She and her team were the first ones in Norway to claim they could cure Long Covid at the centre Helse i Hardanger which recently closed down. She and her team are instead resurfacing with an online version of the same treatment approach and have re-launched themselves as someone who can offer a brand new and effective treatment for LC (and several other conditions).
Fairly long and sympathetic article about the difficulties of chronically ill people who are wrongly denied ill health retirement. Kristina en av tusentals sjukskrivna som tvingas leva på bidrag: ”Förnedrande” https://arbetet.se/2025/01/20/krist...rivna-som-tvingas-leva-pa-bidrag-fornedrande/
Another person with severe ME/CFS is being threatened with forced psychiatric hospitalisation in Denmark. There is a petition here. Petition thread here:Petition: 2025 Denmark: Protection of woman with very severe ME/CFS, Line
It now appears that the BPS lobby, the Oslo consortium, and Elin Lindsäter have direct influence over ME care in the Stockholm region - and that the region chooses to label ME as fatigue. Read more at my blog (Google translated): https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
They are targeting the insurance companies. They allegedly ran a 10 people pilot. I’ve seen comments from people that declined to participate (for obvious reasons), and from people that took part and experienced severe deterioration. I can’t verify their claims, though. It seems like they might have lucked out with one or two - but that’d all they needed for a puff piece and «proof». From what I’ve gathered, the OCD treatment might actually have some value. It’s a shame they are unable to stay in their lane though.
We have been off to a strong start of the year when it comes to opinion pieces, with several accepted from patient advocates Frøydis Lilledalen and Lena Kjempegren-Vold Forskning.no Helsesystemet står med svekket tillit i møtet med ME-pasienter | The health care system has little faith for patients with ME Psykologiseringen av ME-pasienter synliggjør psykologiens umodenhet | The psychologisation of ME-patients highlights the lack of maturity of psychology as a field Dagens Medisin Fra Semmelweis til ME-pasientene: Hvorfor vi må lytte til dem som står nærmest problemet | From Semmelweis to the ME patients: Why we have to listen to those closest to the problem From december last year, but I'll add it anyway Psykologtidsskriftet (Norwegian journal of psychology, that ran a special issue on health psychology in december that also included a text on the benefit of the mislabelled biopsychosocial model) Et forsvar for en biomedisinsk tilnærming til ME | A defense of the biomedical approach to ME
Pretty amazing article describing all the various body parts of an elephant, even somewhat self-aware of it, but censored into not saying it. They are trying very hard to blame this on mental illness, blaming 'lockdowns' is still popular in Sweden, even though they also love to boast about how they didn't do that. It's really something seeing how an entire society, its government and institutions can fall for the exact same conspiracy traps as random people. But here they prefer to go with a general "more stress" vibe. The elephant in the room is described, but mentioning it is forbidden. The minister on why sick leave is soaring: "I don't have the answers" https://www.tn.se/arbetsmarknad/41015/ministern-om-varfor-sjukskrivningarna-skenar-har-inte-svaren/ See, they're not at risk of medical issues, so it can't be medical. Bootstrap-based medicine. I think they just have no idea what illness is, does or even means. Just a comically inept, and intentional, misrepresentation of reality: Health care is extremely political and ideological. It is far more political than scientific.
Paywalled article in one of Sweden's largest newspapers. Forskare: ”ME och postcovid samma sak” https://www.svd.se/a/eMXwxl/maria-fortfarande-sjuk-men-snart-kan-gatan-om-postcovid-fa-svar
I have been gathering materials related to Elin Lindsäters ”Fatigue-study” for a while and have now compiled them on a special page on my blog. There you will find information about ethical review and applications for research funding, along with both documents and excerpts from them. Welcome to dig in! Google translated link: https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
Another good opinion piece at the start of the year: Psykologiske tolkninger av fysiske symptomer er ingen eksakt vitenskap | Psychological interpretations of somatic symptoms is no exact science Also, there are several old articles on ME (and long covid) on the main page of Forskning.no for some reason. I'm not complaining (I don't know if they have started showing different old articles to different readers or anything like that).
Opinion piece by the Swedish Covid Association in a newspaper, about their complaint to the Parliamentary Ombudsmen against the National Board of Health and Welfare. Thank you! For those who might be new to this or haven't been following along, the "knowledge support" this complaint is about is the clinical guideline for "post covid and other related conditions and syndromes" which includes ME/CFS. Svenska covidföreningen: Därför JO-anmäler vi Socialstyrelsen https://www.altinget.se/rikspolitik...reningen-darfor-jo-anmaler-vi-socialstyrelsen
Article in a local newspaper about a severely ill pwME, and about her not getting the help she needs at home, not even with food or basic hygiene. ME-sjuka Jessika: ”Jag ligger här och sakta dör" https://www.sttidningen.se/nyheter/...akta-dor.a35d1323-9fa9-4da4-97d8-3a37ff9d02e3
