Not ME related, but in "Dagens Medisin" there is an article now about pwDiabetes, where the doctor says it is important to not downplay risks of relapse if the patient no longer qualify for a diabetes diagnosis due to blood glucose levels below the diagnostic threshold (for example due to a change in lifestyle). Just a very different perspective than talking about hope for recovery. Another recent article on heart health stated that the evidence base for using exercise as treatment is poor (and they were doing a new study to get better evidence). Again, very different from what we're told time and time again - even if the evidence base when it comes to pwME is even poorer.
Vetenskapsradion På Djupet: De mystiska sjukdomarna postcovid och ME – kan forskarna lära av varandra? https://sverigesradio.se/avsnitt/de...stcovid-och-me-kan-forskarna-lara-av-varandra (Audio, 20 minutes, in Swedish.)
Vetenskapsradion Nyheter: Postcovid kanske kan lösa gåtan med ME https://sverigesradio.se/artikel/postcovid-kanske-kan-losa-gatan-med-me (Audio, 2 minutes, in Swedish)
The ArchMethod has started popping up in certain Swedish ME groups lately. It's an alternative kind of low-level transcranial laser therapy, it seems? One of the sellers says she has recovered from ME. I haven't bothered reading up on it, but I'll leave the link here in case anyone else would like to find out more. (Not a recommendation!) https://humanrecharge.com/archmethod-science/
Ny studie ger hopp för ME-sjuka: ”Stort steg” https://www.expressen.se/premium/halsa/ny-studie-ger-hopp-for--me-sjuka-stort-steg/ A paywalled Swedish mainstream news article today, about the Gotaas et al CBT study. Seems to be based on the Norwegian Dagbladet news article published in May?
It's a shortened and translated version of this article from September 19 (pay walled) https://www.dagbladet.no/tema/me-forskere-har-funnet-tre-undergrupper/74229259 Translated excerpts from Expressens article "Ny studie ger hopp för ME-sjuka: Stort steg":
Thank you so much, @Anna H I just noticed that the Swedish health magazine MåBra has published an article too, based on Expressen and Dagbladet's articles: Studie: Kan finnas undergrupper av ME – öppnar för bättre behandling https://www.mabra.com/medicin/forskning-me-cfs-kan-finnas-undergrupper/7907150 Google Translate, English
A new motion to the Swedish Riksdag (Parliament), submitted 1 October, 2021. Bättre behandling för människor med diagnosen ME/CFS https://www.riksdagen.se/sv/dokumen...handling-for-manniskor-med-diagnosen_H9022241
The Norwegian ME Association, The National Competence Service for CFS/ME and the Norwegian Institute for Public Health are organising a research conference in Oslo November 22-23. The conference is aimed at researchers, health care personnel and students. Lecturers: Karl Johan Tronstad Marte Viken Kjartan Sarheim Anthun Jonas Bergquist Anne Kielland Ingrid Gurvin Rekeland Anthony Komaroff Vegard Bruun Bratholm Wyller Nina Langeland There will also be a separate conference in the afternoon of November 23. which is open for everyone. More information will be provided soon. https://www.me-foreningen.no/2021/09/30/forskningskonferanse-2021/
Västra Götalandsregionen: Nytt avtal skrivs med Smärthjälpen Sverige AB https://www.pressmachine.se/pressrelease/view/nytt-avtal-skrivs-med-smarthjalpen-sverige-ab-32847 Smärthjälpen is a privately owned BPS pain clinic...
Two more job listings for the planned ME clinic in Umeå, Sweden: Fysioterapeut till vår nya ME-mottagning (Myalgisk Encefalomyelit), Umeå https://www.regionvasterbotten.se/jobb?itemid=85e26ef800934234f2d6c0e6dcc82d16 Arbetsterapeut till vår nya ME-mottagning (Myalgisk Encefalomyelit), Umeå https://www.regionvasterbotten.se/jobb?itemid=c22a1925ef77d619b6e08a443a2cdc0b
Halsont utlöste mardrömmen för Elisabeth – lever med både ME och POTS-syndrom https://www.allas.se/halsa/elisabeth-drabbades-av-virusinfektion/7914566 Google Translate, English
Long covid on Swedish TV: Malou Efter tio: Patric drabbades av corona – två gånger Code: https://www.youtube.com/watch?v=RwWFBO4UW3I Så många drabbas av långtidscovid https://www.tv4play.se/program/malou-efter-tio/så-många-drabbas-av-långtidscovid/13381079
(Not a recommendation.) RME (the Swedish ME Association) is arranging a webinar in collaboration with the Swedish EDS and Fibromyalgia patient organisations. The title of the talk is "Long-term pain: psychological aspects - Pain in the body, pain in the soul" (Långvarig smärta: Psykologiska aspekter - Ont i kroppen, ont i själen) The speaker is Marcelo Rivano Fischer, psychologist. I asked Google, and Google replied: CBT/ACT, graded exercise, graded activity, changing beliefs and managing emotions, teaching the patient about pain (fear, avoidance, pain catastrophization, hypervigilance, anxiety, depression, perceived helplessness, fear of movement/activity, "pain doesn't necessarily mean there's something wrong in the body", thoughts and emotions exacerbate the experience of pain, a sensitised nervous system becomes overprotective, psychological flexibility, etc), "lose weight to get rid of your pain", and so on. List of publications: https://portal.research.lu.se/porta...no(3185dd7e-ba25-4d05-a97f-b2ce6ef68d47).html A talk on the cultural aspects of pain (video, in Swedish): Code: https://vimeo.com/110463002 Slides from one of his talks on the psychological aspects of pain (in Swedish): https://docplayer.se/167955435-Marcelo-rivano-fischer.html Långvarig smärta kräver teambaserad rehabilitering https://lakartidningen.se/klinik-oc...rig-smarta-kraver-teambaserad-rehabilitering/ Smärta på gott och ont https://www.vetenskaphalsa.se/smarta-pa-gott-och-ont/ (Edited to fix typos.)
Vanja Wikström kraschade när sambon fick ME: ”Kroppen skrek efter hjälp” https://www.mabra.com/psykologi/vanja-wikstrom-om-kraschen-och-sambons-diagnos/7931094
(Not a recommendation.) Yesterday's episode of the Swedish TV programme Fråga Lund was about ME and fibromyalgia, among other things. https://www.svtplay.se/fraga-lund I haven't watched it myself, but comments written by pwME on social media suggest it was "very unhelpful", biased, ill-informed and factually incorrect.
A very well written opinion piece for the Norwegian public broadcaster by a young, severe ME sufferer. I hope the google translation is ok, because this is well worth a read. We have a new government and a new Minister of Health which is the 6th Minister of Health while Emilie has been ill. She hopes 6 is a lucky number and she has five suggestions for how the new Minister can improve the situation for ME patients. Emilie Brandshaug: Et liv i permanent lockdown google translation: A life in permanent lockdown Quote: ME patients have been left to fend for themselves in dark rooms for decades. While society opens up and people dance in the streets, thousands of Norwegians continue to live in permanent lockdown. I am one of them. ... Some of the worst is the feeling that the authorities accept the situation, despite repeated cries for help. I feel powerless and worthless. This letter is my last hope to reach you with the opportunity to do something about the situation of the country's sickest.
Here's to hoping that the sentence about prioritizing ME research in the new state budget leads to something.
Emilie Brandshaug has received a reply from the Minister of Health Veien ut av mørke rom google translation: The way out of dark rooms Quote: Dear Emilie, I understand very well that you are in despair. After many years with severe ME disease, you experience not getting the health care you need, and not having schooling or a job. You're definitely worth saving, Emilie. And you are not left to yourself. ME disease has been and is being researched. Both here at home in Norway and internationally. Researchers are still looking for the cause, and so far no safe treatment has been found. I also believe that the research will give us more answers. But we do not give up! We still have a great need for more knowledge and a better treatment offer. I totally agree with you. Research is expensive, but refraining from research is not an option. Therefore, we ask the Research Council to continue to prioritize research on ME.
Referring to the national competence center's guideline while talking about the importance of children being able to go to school... the ME Association could have received some credit for their work in this area (including providing resources and training material for schools). And the misspelling at the end (MS, instead of ME) was rather unlucky in a final paragraph when a lot of the text is about increased understanding and helping patients I'm a bit negative of our health services today, never mind me
