My condolences to her friends and family. This is not the first person who has taken drastic action to avoid further so called "care" of the mental health professionals who have been involved in their case. Long past time for psychiatry to take a long hard look at themselves and the harm they inflict on their patients and the patients ' families.
Great article in a women's magazine (Except that Björn Bragée is claiming that "10-20% recover" ) https://www.amelia.se/halsa/halsa/alexandra-lever-med-me-det-ar-en-skitsjukdom-/
I, too, would like to know. What if people cancel for a variety of completely different reasons? Maybe being too ill and/or not able to travel, maybe feeling it's not worth going back for whatever reason etc, who knows? Also, he doesn't seem to ever talk about remission or a possible relapse-remission situation, or the risk of becoming ill again after a period of seeming to be recovered etc. Only recovery...
Former general secretary of the Norwegian ME Association Anette Gilje in an interview in the newspaper Dagsavisen. She warns against stricter and more difficult rules regarding benefits and against increasing patient blaming. Dagsavisen: AAP-endringene rammer ME-syke hardt google translation not possible
Nina E. Steinkopf with a blog post about a planned study in Norway on Lightning Process and ME/fatigue. The projects is supported by the Norwegian Institute for Public Health, the Directorate of health and the National competence service for CFS/ME. Prof. Wyller is in the project group, as is Silje Reme who did a qualitative study on LP and adolescents years ago in England. In the cooperation/support group to the trial are among others Esther Crawley and Henrik Vogt. The protocol is 110 motivated ME patients taking LP. One group takes LP right away, the control group will also take LP ten weeks later. According to LP coach Live Landmark, there are over 5 000 people who has taken LP in Norway. It costs 16 500 NOK. 5 000 X 16 500 = 82,5 million NOK (8 920 000 USD/6 840 000 GBP/8 200 000 EUR) No wonder someone wants to expand the business.. Helsemyndighetene støtter forskning på kontroversiell alternativbehandling google translation: The health authorities support research on controversial alternative treatment
It is interesting that the amount who has taken LP in Norway is the same as members in The Norwegian ME Association; 5 000. As comparison, Recovery Norge, the organisation for ME patients who has recovered by LP has 180 members (including LP coaches and relatives to LP coaches).
I just don't understand why we can't have actual biomedical research. Why must it always come to personal/commercial interests? Just like the PACE trial, this is money wasted for nothing. The usual culprits are in, Esther Crawley included. Setting up a petition against the study that points out the flaws of LP, with references to GET and CBT harm, as well as the recent support voiced by medical professionals in Norwegian newspapers could help. At least, I hope some possible participants would see it and wouldn't get involved as a result... EDIT: the open letter from the ME Foreningen in Denmark is definitely worth mentioning (https://me-foreningen.dk/wp-content/uploads/2020/01/Forskerbrev.-pdf.pdf)
This was on a Swedish TV this morning, 10 minutes long: TV4 Nyhetsmorgon: ME-sjuka Alexandra: ”Sjukdomen har tagit bort hela mitt liv” https://www.tv4.se/nyhetsmorgon/kli...ukdomen-har-tagit-bort-hela-mitt-liv-12526762 And this, drs Björn Bragée and Anna Lindquist (8 min): Läkaren om ME: ”Många förstår inte hur man ska hjälpa” https://www.tv4play.se/program/nyhetsmorgon/12526765?first=12526762 ETA: https://twitter.com/user/status/1229030287453097984
Two more articles in Aftonbladet today, with a comment from the Minister for Health and Social Affairs: Socialministern: “Vi ska ha en hälso- och sjukvård i Sverige efter behov” https://www.aftonbladet.se/tv/a/306...-ha-en-halso-och-sjukvard-i-sverige-efter-beh ME-sjuka Lotta tog sitt liv: ”Hon kämpade för att få hjälp” https://www.aftonbladet.se/nyheter/a/pLvQg6/me-sjuka-lotta-tog-sitt-liv-hon-kampade-for-att-fa-hjalp ME-vård saknas has published a comment on their Facebook page and blog: Vem ser till att regionerna infriar löftet från socialministern? https://mevardsaknas.wordpress.com/...gionerna-infriar-loftet-fran-socialministern/
For now the description of how the study is supposed to be carried out is just a few lines in applications for money. To be honest I'd be surprised if it ever gets started.
A Swedish woman with ME is fundraising to publish a book for children about ME. (I don't know enough about the book project or her as a writer to say whether I would recommend supporting it or not.) Code: https://www.facebook.com/donate/506188676991375/1356556321181376/
Note from moderators: This post has been copied and another has been moved to the thread about Sten's letter here: https://www.s4me.info/threads/letter-to-the-editor-about-me-cfs-in-swedish-medical-journal.13695/ Good opinion piece about ME in the Journal of the Swedish Medical Association. It's written by Sten Helmfrid and Sture Eriksson from the Swedish ME Association. When myalgic encephalomyelitis / chronic fatigue syndrome (ME / CFS) is noticed in the media, the lack of knowledge about the disease mechanisms and disagreement within the medical profession is often emphasized [1, 2]. Caregivers use the knowledge gaps as an excuse for inaction [3]. It is therefore important to point out that there is much that the researchers actually agree on and that the care of this disadvantaged patient group must be improved. Läkartidningen: Vården använder kunskapsluckor som ursäkt för passivitet vid ME/CFS google translation: Health care uses knowledge gap as excuse for passivity with ME/CFS
This was on Swedish TV earlier today (13 min): TV4 Malou Efter 10: Flera ME-sjuka har tagit sina liv - ”Det finns faktiskt mycket att göra” https://www.tv4.se/efter-tio/klipp/...v-det-finns-faktiskt-mycket-att-göra-12526936 (I'm too sick, haven't been able to watch it myself, nor any of the others from earlier this week, so I can't comment on them.)
Article in the Norwegian broadcasting cooperation NRK. I's about ME sufferer Elisabeth who had been ill for 12 years when she applied for disability benefits. It was rejected and she was told to try CBT, GET and a class in learning and mastery in health. She deteriorated so much from the graded exercise that her physiotherapist chose to stop the treatment. The Labour and Welfare Administration however says she stopped too soon, and might have gotten better if she carried through with the treatment. Specialist Dag Gundersen Storla has worked with ME patients for 15 years. He confirms that ME patients deteriorate if they do too much. He says there is one study that shows GET/CBT may better the quality of life for some ME patients, but that it doesn't improve the energy level or the ability to work. It may even cause longer time to get well. A spokesperson from the Labour and Welfare administration says that each case must be viewed individually, and that it's therefore wrong to claim CBT is a systematic approach. He also doesn't know of any medical consensus about CBT making ME patients deteriorate. A spokesperson from the Norwegian Directorate of Health on the other hand is clear that these treatments may have a negative effect. They treatment should not be systematically applied to this patient group. NRK: ME-spesialist: Nav har misforstått forskningen google translation: ME-specialist: The Labour and Welfare Administration has misunderstood the research
It is strange, given the general societal concerns over issues of "health and safety", that there should be such an absence of concern and lack of safety protocols to protect those who seem harmed by treatments. Some might consider it negligent. EDIT Others might consider it deliberate.
