Article about ME on the Swedish Brain Foundation's website. Hjärnfonden: "Sjukdomen har stulit mitt liv" https://www.hjarnfonden.se/2020/12/sjukdomen-har-stulit-mitt-liv/ Google Translate, English ("The Disease Has Stolen My Life")
I love that error, "post exceptional malaise". If this happens a lot that must mean there is a lot of exceptional work going on
Ah ah! It's that much-mythologized perfectionism! It was right in our faces all along, just as a typo! The fools we are!
Jørn Tore Haugen, Master of Science in Engineering, has written a guest blog on "Life with ME by Sissel" titled "CFS/ME - A "factor" in plasma?" The article is in both English and Norwegian version. Sub headlines are: Briefly about the blood Briefly about glucose and synthesising to ATP Fluge/Mella/Tronstad's group Ron Davis' group Prusty and Naviaux's groups Karl Morten's group Carmen Scheibenbogen's group Jonas Bergquist's group Julia L. Newton's group Two other groups 1. Alain Moreau's group 2. Mady Hornig, Ian Lipkin and others Summary Final Myalgic Encephalomyelitis, also called CFS/ME, is a disease without a known biomarker. Research by several research groups, independently of each other, has, however, made findings in plasma that may help to narrow the search for the cause of CFS/ME. Plasma from ME patients has shown to provoke aberrant responses, a form of hibernating, both in cells from ME patients and healthy controls. At the same time, plasma from healthy controls has eliminated this abnormal response in both cells from ME patients and healthy controls. In addition, several groups have shown that a key enzyme in energy metabolism, pyruvate dehydrogenase (PDH), is down-regulated.
@Kalliope do you know how to get in touch with Sissel or Jørn? There are some errors in this post, when they explain the biochemistry. The contact form does apparently not work if I am to understand a reply I got just now that Trine is not using the blog service anymore..
A Swedish novel about ME, based on a true story, is to be published in a couple of months. (I have not read the book, so this is not a recommendation, just info.) Blunda och räkna till hundra ("Close your eyes and count to one hundred") by Pernilla Soland. In the comments below the linked Facebook post the author says that "the book is about ME, written from the perspective of a mother, focused especially on the onset of the disease and everything that followed". On the mockup of the book cover it says that the main character is a 13 year old girl.
Another new Swedish book about ME, available to order now: Mamma med ME by Anna Azouz. (I haven't read the book, so this is just info not a recommendation.)
P4 Dalarna: ME-sjuka hoppas få hjälp av coronaforskningen https://sverigesradio.se/artikel/me-sjuka-hoppas-fa-hjalp-av-coronaforskningen
The Norwegian ME Association reports in their latest news summary that they have just published a new survey about disease course. The survey took place in 2019 and had 5 822 respondents. The survey had two main questions: what are typical disease courses and which factors have had a negative or positive influence. The report was presented yesterday for the Norwegian Directorate of Health. In the summary of the report they present ten main findings (hastily translated to English by me) - ME is a chronic illness - Many are moderately ill, which is serious - Large fluctuations or deterioration are typical courses - Recovery happens, but seldom (2% of the respondents) - A peak in new cases in 2009, which coincides with the swine flu - Severe disease is associated with early illness debut - Pacing was the best "medicine" - The health care system contributes both to better health and to deterioration - The Norwegian Labour and Welfare Administration makes ME patients worse - With better adaptions, treatments and understanding, it is possible to have a good life with ME. Here is link to the report in full (Norwegian only) https://www.me-foreningen.no/wp-content/uploads/2021/01/Rapport-undersokelse-forlop-komplett.pdf
I was just going to post this. Haven't read it yet, but look forward to doing so (although I guess there will be a lot of distressing answers). I can't remember if I answered the questionnaire myself.
Absolutely. I would estimate competent health care would cut total disease burden by 60-90%, meaning most of it, if not almost all of the total disease burden, is inflicted by neglect from health care services. Denial has consequences. It varies in time, by now it is 90%+, there has been no credible excuse for continued denial for many years. Almost all the pain and suffering is an ongoing choice made against our explicit dissent. Impressive numbers given a 5M population. Massive applause to those who did this.
Will this be translated into English? At least the bit about the different time courses should be more widely available as there's been so little research into this anywhere (section 4, starts on page 19). Very interesting reading. If anyone just wants to look at the graphs: svingninger/svingende=fluctuating forbedring=improvement forverring=worsening stabilt=stable store=large små=small
I don't know. But I hope they're able to make a summary in English. They've published several very good and thorough reports based on surveys and I agree it would be great if more was available in English. Probably comes down to capacity.
New guest blog from Jørn Tore Haugen, Master of Science in Engineering at the blog "Life with ME by Sissel". The title is: Energy failure in ME/CFS Sub headlines: Mitochondria What is PEM? What is a CPET? Overview studies Learn more The battle for truth In this blogpost, Jørn Tore Haugen has summarized 24 studies showing abnormal lactate and oxygen values in CFS/ME-patients following such a bicycle test (CPET). He has also made an overview of lectures and webinars for those who want to learn more. English: Energy Failure in ME/CFS Norwegian: ME-syke har energisvikt
A Swedish clinical guideline for ME has recently been published. Nationellt kliniskt kunskapsstöd: Kroniskt trötthetssyndrom, ME/CFS https://nationelltklinisktkunskapsstod.se/dokument/176d1b90-4fb6-4731-a544-1320d63fd741 There's some more info and discussion in this thread.
At the end of the description for mild: "The patient can manage work, for example" Of all examples to choose from
Aftonbladet: ME-sjuka Jessika: Jag ligger i sängen 22 timmar om dygnet https://www.aftonbladet.se/nyheter/a/GaB8qJ/me-sjuka-jessika-jag-ligger-i-sangen-22-timmar-om-dygnet Google Translate, English
Nina E. Steinkopf has written an opinion piece in the Journal for the Norwegian Psychologist Association about NICE's guideline draft appealing to health authorities in Norway to keep up with new knowledge and development in the ME field. Bør legge utdaterte råd på hylla google translation: Should put outdated advice on the shelf
