Part 5 about Maja. Avestahälsan om kritiken: ”Postcovid är inte beprövat och godkänt” https://www.avestatidning.com/2024-...tiken-postcovid-ar-inte-beprovat-och-godkant/
Yeah this is exactly what HIV and climate change deniers say. I don't get this refusal to do anything based on lack of information when it's their whole job to do this. Lazy bums waiting for a handout.
Part 6 about Maja. Mötet om Maja blev en chock: ”De säger att jag gör Maja sjuk” https://www.avestatidning.com/2024-10-22/motet-om-maja-blev-en-chock-de-sager-att-jag-gor-maja-sjuk/
An interesting watch. Related to this, an Icelandic doctor who has a son with ME/CFS has joined the board of IACFSME. More here: International: IACFS/ME - International Association for CFS/ME, IACFSME
Opinion piece in the Norwegian public broadcaster NRK by Guro Kjeilen Jakobsen. She is 23 years old and got ME after a tick bite when she was 16 years old. She tells about the cost of fighting for proper care: Systemet som skulle hjelpe meg Google translation: The system that was supposed to help me quote: When, more than ever, I needed to be met with help and care, I met distrust and rejection from the people and the system that was supposed to be there to receive me. I grieve for the life I lost because of the disease, but also have to deal daily with the fact that I have less value than patients with the "right diseases". To have ME is to be worth less. Every day is a fight for basic rights and I never get a break.
Paywalled news article in a local paper: Richard Gavettes låtar släpps efter hans död https://www.hn.se/noje/musik/richar...hans-dod.8ce0c630-0ae0-4541-840f-7200a3f0e151 http://richardgavette.se/
Two pieces in Sundhedspolitisk Tidsskrift, one written by editorial staff (based on press release by the Danish ME Association), the other an opinion piece urging the health minister to take note of Maeve's death and learn from it https://sundhedspolitisktidsskrift-...=da&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp https://sundhedspolitisktidsskrift-...=da&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp
Conference Stavanger 2025 Norway's largest conference on ME/CFS and Long Covid will take place in Stavanger on 7 and 8 May 2025. Here, 11 speakers from six countries will provide an introduction to research in the field and share experiences from clinical practice. https://www.mekonferanse.no/en/
Swedish healthcare advice 1177 now has a section for healthcare personnel. I have compiled what information the different regions provide to their staff regarding ME. Some regions have very problematic information. Link to blog post (via Google translate): https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
The 1177 healthcare page for my municipality states something like ”a few studies show patients improve with physical exercise”. This is never going to end, is it?
(Not ME specific.) An opinion piece about AI and medical records. Worth a read Elsa Kugelberg: Att ”bukbesvär” blir ”kukbesvär” kan låta kul – tills man börjar medicinera https://www.dn.se/kultur/elsa-kugel...var-kan-lata-kul-tills-man-borjar-medicinera/
More bad news from Stockholm, which affects all of us since they are the only dysautonomia specialist clinic in Sweden. Not specifically about ME, but it is affecting many pwME. No official info yet, the Swedish Covid Assocation is looking into it. Here's a summary of what we currently know, written by a pwPOTS: När vården rasar samman https://potssorkensresa.com/2024/12/09/nar-varden-rasar-samman/
The Swedish Covid Association published a template/guide today (in Swedish) to help patients, who have been wrongly discharged, report it to the patient advisory committee (Patientnämnden). https://covidforeningen.se/utskriven-fran-hjarta-karl-karolinska/
Oslo Chronic Fatigue Network on CFS and CBT. https://www.sciencenorway.no/chroni...-fatigue-conditions-are-not-incurable/2439883
'a gradual increase in activity helps people recover.' 'This new research provides evidence for treatments that will help people recover, and is consistent with the approach the Oslo Networks understanding of these conditions.' Signed by Paul Garner who was one of the authors of the BMJ review.
This is a Lightning Process story that has already been told several times before in the media, about a young woman who suffered from severe ME but now has recovered and has become an athlete. What's not to love? It was told once again today by Norwegian TV2. What's new to the story though are some critical comments about LP by a professor in psychology. It's so good to finally see some more nuanced media coverage about LP in my country: (auto translated) Lightning Process is a controversial self-help program. TV 2 has spoken to Professor at the Department of Psychology (UIO), Jonas R. Kunst, who is not convinced that the treatment is effective. – Lightning Process is a self-help program that claims to be able to improve the health of people with ME, a condition for which there is broad agreement in medical fields that there is no treatment. The program is based, among other things, on a purely speculative assumption that a chronic stress response, which is allegedly due to the sufferers' focus on symptoms, maintains the disease, he says. – Does the treatment work on ME patients? – There is no good evidence that Lightning Process has a positive effect among ME patients. On the contrary, several report that they have experienced a worsening of their symptoms after going through the program. Based on this, for example, British health authorities explicitly warn against people with ME participating in Lightning Process. In the UK, Lightning Process has also been convicted of being misleading in its marketing, Kunst replies. The professor points out that studies indicate that only a few patients with ME experience spontaneous recovery and recover. – What is your view on the Lightning Process? – Most up-to-date professionals have long since shelved the Lightning Process. Those who still hold on to this method often have personal or financial interests. For example, they may have built their careers on outdated psychological explanatory models for ME, or that they themselves are involved as LP therapists, the professor answers.
Maybe journalists could start interviewing Kunst instead of Reme when they need someone from psych at UiO. I'd like that very much!
Opinion piece in a local newspaper, by two politicians. ”Nya råden direkt skadliga för ME-patienter” https://www.barometern.se/2024-12-14/nya-raden-direkt-skadliga-for-me-patienter/
