Being able to attend school only half time is, of course, not at all normal. I can think of many people with ME/CFS who were initially severely ill, and who improved over the first few years, either due to some healing and/or learning better how to manage their illness - all without any 'joy from horses'.
Posts on the questionnaire for classifying the level of functioning pf pwME under development by Kristian Sommerfelt/Norwegian ME Association has been moved to a new thread: Norway: Developing a new questionnaire for classifying the level of functioning in pwME/CFS, open for feedback
Forskning.no has a narrative review of sorts about what goes wrong in the body of pwME. Overall it's good, although I struggle to understand why the Mayo clinic is cited instead of say, the new NICE guidelines. This is going to be nice to have with the lightning process study approval meeting in just a few days and the usual nonsense from the people involved about pwME who don't want to be mentally ill popping up in the media. It mentions how little biomedical research has actually been done, decodeME, the comeback study (not by name), various theories by different researchers in Norway including Fluge and Tronstad. There is a quote from Wyller, but his theories are not given much space. Hva skjer i kroppen til de som har ME? What happens in the body of those who have ME? I really enjoyed the ending, encouraging more people to study ME:
A heartbreaking article about severe ME sufferer Aurora's fight with her municipality to get the help she and her doctors says she needs. Dagsavisen: Mens hun venter på helsehjelp, ligger Aurora (24) i mørket google translation: While she waits for health care, Aurora (24) lies in the dark quote: Aurora's mother and grandmother are worried about what will happen to her. They have devoted almost all their time to helping her, and are afraid that her pain will be chronic forever. But all the time they have spent writing applications for the district has not worked. Aurora is still in a health center in the dark. - It's like banging your head against a bureaucratic wall. It is as if Aurora becomes totally invisible and all information about her is completely uninteresting. As a relative of a child who is seriously ill, it becomes impossible to have a good dialogue when we encounter such bureaucratic general answers, says mother Hanne.
The newspaper Dagsavisen is following up this story. The health political spokesperson for the socialist party (SV), Marian Hussein, has started to get engaged in ME and supports the patients. She has asked the Minister of Health and Care Services to answer how ME patients should be ensured a better health service, and will get a reply within a month. The Minister shared the article about Aurora yesterday on her Facebook page, so that might be a sign of something positive. Quotes from today's article: An ongoing research project under the auspices of the research foundations Sintef and Fafo, which was recently mentioned in Klassekampen , indicates that many of the health services ME patients receive today contribute to making them sicker. - It shows that here we have a human view that is not worthy of our time. We must stop and say that this is not how people should meet. We need to find out how we can set up our health care system so that people get the health care they need. People should not get sick from meeting the health service, says parliamentary representative Marian Hussein (SV). ... Hussein believes that ME patients are generally distrusted, and are expected to receive treatment that may have worsened their situation. - The key must be that the patient group is treated as equals, and that we must see the people where they are, and not reject them on the basis of any thoughts that do not belong to our time. We have to take them seriously, we can not sit and watch in silence, she says. She believes one of the main challenges today is an ME patient being met by a healthcare system that lacks sufficient knowledge. Dagsavisen Mener ME-syke blir mistrodd: - Vi kan ikke sitte og se på i stillhet google translation: Believes ME patients are distrusted: - We can't sit and watch this in silence ETA: Hussein is a social worker with leave from the Norwegian Labour and Welfare Administration while she's in the Parliament.
ME gets a tiny mention in this article on mental fatigue/brain fatigue ("hjärntrötthet") in the journal of the Swedish Medical Association today: Hjärntrötthet – ett osynligt gissel https://lakartidningen.se/klinik-oc...kt/2022/03/hjarntrotthet-ett-osynligt-gissel/
Region Stockholm VISS.nu's webpage about ME has been updated (March 2022). Vårdprogram ME/CFS https://viss.nu/kunskapsstod/vardprogram/me-cfs
I found this on twitter, posted by AMMES (American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society). It's dated Jan. 28, 2022, so it's a few months old. I did a search to see if it had been posted before but didn't find it. Please delete if this has already been posted or is not useful. ===== The Journey Towards Becoming Diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Patients’ Experiences Authors: Kristina Tellmar, Petra Christensson , Gabriella Bernhoff, Bo Christer Bertilson and Hanne Konradsen https://www.ecronicon.com/ecne/pdf/ECNE-14-01012.pdf
A post about a University of Copenhagen Master's degree project has been moved to a new thread: Ethnographic research project called ‘INVISIBLE ILLNESSES.’ 2022, recruiting UK participants
Two paywalled articles in the Swedish newspaper GP today: Benjamin blir sjuk av att ta en promenad Livsstil / Benjamin Glänte, 24, är ständigt trött och blir sjuk av en promenad. Efter en omgång körtelfeber för sex år sedan fick han kroniskt trötthetssyndrom, en omtvistad diagnos utan bot. – Jag hade gett upp allt, mina företag och pengar, om jag bara fick slippa detta och börja om på nytt, säger Benjamin. https://www.gp.se/livsstil/benjamin-blir-sjuk-av-att-ta-en-promenad-1.70474710 Postcovid kan ge upprättelse till ME-sjuka Livsstil / Patienter med kroniskt trötthetssyndrom, även kallat ME/CFS, har länge varit utlämnade till en oenig läkarkår och hemmasnickrade dieter för att råda bot på sina symptom. Med forskningen om postcovid får de en chans till upprättelse. – Det tidigare kontroversiella med att få långvariga besvär efter virusinfektion är inte lika kontroversiellt längre, säger läkaren Per Julin. https://www.gp.se/livsstil/postcovid-kan-ge-upprättelse-till-me-sjuka-1.70537527
Paywalled article in a local Swedish newspaper today. Björns långa vandring – efter kampen mot den svåra sjukdomen: "Ta det med ett brett leende" Han har redan vunnit en stor match, från att vara totalt utslagen till att springa ett maraton. Nu tar Björn Eklund nästa kamp – en promenad från Sundsvall till Stockholm. – Det här gör jag för de 40 000 ME-sjuka i Sverige och det ska bli fantastiskt roligt. Jag ska ta stela leder, skavsår och vakna nätter med ett brett leende, säger han. https://www.st.nu/2022-04-16/bjorns...n-svara-sjukdomen-ta-det-med-ett-brett-leende (Sundsvall to Stockholm is approximately 400 kilometers, I think?)
Looking forward to hearing the stories of Agnetha & Anni-Frid . . . Sorry, not really a serious post discussing the stories.
ME on Swedish breakfast TV today: TV4 Nyhetsmorgon: Niklas lever med svåra sjukdomen ME: ”Man får hela sitt liv kidnappat” https://www.tv4.se/artikel/7DKJXCVM...-sjukdomen-me-man-far-hela-sitt-liv-kidnappat Osynliga symptomen vid ME-sjukdom: ”Kan vara en tortyr” https://www.tv4.se/klipp/va/13762050/osynliga-symptomen-vid-me-sjukdom-kan-vara-en-tortyr (I haven't watched it so I can't comment on it. Comments on social media are very mixed: some are grateful for the attention and that it shows that ME affects the whole family, while some are very disappointed and sees it as a missed opportunity to get even the most basic facts and needs across.)
I have written a text in response to the interview with Bertilsson in TV4 and Juhlin in GP. ”Yesterday, Myalgic Encephalomyelitis (ME) attracted attention in both GP and TV4. Some of what came out were good things, but the day still ended with me screaming. For is totally incomprehensible to me that two doctors with experience in specialist care for ME chose to use expensive media space to tone down the disease, when they should instead have taken the opportunity to sharpen the tone.” You can find a Google translate version via this link: https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp
Swedish author Fredrik Blomqvist will soon be talking about ME in an interview, in the local newspaper Mariefredsposten.
Paywalled article in a Swedish local paper today: "Jag får kämpa jättehårt för att klara av mammalivet" – Madelenes vardag raserades av ME https://www.tidningenangermanland.s...-mammalivet--madelenes-vardag-raserades-av-me
Sympathetic article about the importance of humility, written by a GP. Published in the journal of the Swedish Medical Association. »Ödmjukhet kanske är en av de allra viktigaste egenskaperna hos en duktig läkare« https://lakartidningen.se/aktuellt/...viktigaste-egenskaperna-hos-en-duktig-lakare/ Google Translate, English
