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  1. Kalliope

    Petition against National Competence center for CFS/ME with BPS approach in Norway - anyone can sign

    New blog post from Nina Steinkopf, the initiator of this petition. She is asking patients and carers to tell their stories about what the consequences are from having a Competence Service with a biopsychosocial approach to ME. What are the experiences among patients on meetings with doctors...
  2. Kalliope

    News from Scandinavia

    The Norwegian ME Association with official, good and important inputs for the state budget 2019. 1. Continue the support to the research team at Haukeland university hospital 2. Establish ambulant services for housebound ME patients 3. Earmark allocations for research into clinical treatments...
  3. Kalliope

    Journal of Medical Ethics - National Standards for Public Involvement in Research: missing the forest for the trees (McCoy et al - 2018)

    National Standards for Public Involvement in Research: missing the forest for the trees Abstract Biomedical research funding bodies across Europe and North America increasingly encourage—and, in some cases, require—investigators to involve members of the public in funded research. Yet there...
  4. Kalliope

    Cochrane ME/CFS GET review temporarily withdrawn

    Good thing screen shots were taken. She's deleted some of her tweets, as the one James Coyne is answering to.
  5. Kalliope

    Petition: Per Fink Should Not Spread Lies about ME at Columbia University!

    #MEAction's response to the statement from Aarhus University Hospital Join the fight against stigma and pseudoscience in New York When people sent letters of protest, they were issued a boilerplate response that stated that ME was not the focus of Fink’s talks, and that no presentation was...
  6. Kalliope

    Petition against National Competence center for CFS/ME with BPS approach in Norway - anyone can sign

    5 000 signatures :party::emoji_boom::woot: and keep them coming!
  7. Kalliope

    Petition: Per Fink Should Not Spread Lies about ME at Columbia University!

    Statement from Aarhus University Hospital Danish research on functional disorders causes a stir in the USA The Danish consultant and professor, Per Fink, PhD, DMSc, has been invited to Columbia University in New York to share his knowledge on functional disorders at the conference "Healing...
  8. Kalliope

    News from Scandinavia

    Extrastiftelsen is a big foundation for volunteer work. On Oct. 24th 09.00 - 12.15 they invite to a seminar about user involvement in priority within research. As many of you remember, the Research Council of Norway invited among others ME patients to have their say in how an allocation on 30...
  9. Kalliope

    David Tuller: Trial By Error: Cochrane Withdraws Flawed Exercise Review

    Cochrane Withdraws Flawed Exercise Review Cochrane has decided to withdraw, at least for now, its fatally flawed review of exercise treatments for ME/CFS—or CFS, as the review calls the illness. This review, which reported that graded exercise therapy was an effective treatment, was first...
  10. Kalliope

    Protocol Faecal microbiota transplantation (FMT) in Norwegian outpatients with mild to severe ME/CFS: protocol (...), 2024, Skjevling et al. Comeback Study

    The Norwegian research project on faecal transplantation and ME, The Comeback Study, are still recruiting. They are cooperating with prof. Maureen Hanson. Here's an introduction to the study in English at the website Smart Patients - The Comeback Study
  11. Kalliope

    David Tuller: Trial By Error: ME/CFS is not a psychosomatic illness

    ME/CFS is not a psychosomatic illness W. Ian Lipkin, Director of the Center for Infection and Immunity and the Center for Solutions for ME/CFS at Columbia University, has written the following letter several days before the Fourth Annual Conference on Psychosomatics at Columbia University this...
  12. Kalliope

    Cochrane ME/CFS GET review temporarily withdrawn

    Professor Kristian Gundersen (PACE-apologist og critical of "ME activists") This is a worrying example that even acknowledged research institutions are caving in for pressure #PostTruthSociety
  13. Kalliope

    Cochrane ME/CFS GET review temporarily withdrawn

    Medscape has shared the Reuters-article. A pity they didn't do their own write-up.. Journal to Withdraw Chronic Fatigue Review Amid Patient Activist Complaints
  14. Kalliope

    Petition: Per Fink Should Not Spread Lies about ME at Columbia University!

    I assume this is a statement regarding Per Fink. Official statement signed by Ian Lipkin. Our studies of blood, cerebrospinal fluid, saliva and feces, using state-of-the-art methods that include microbial gene sequencing, metabolomics, proteomics, and immunological profiling, confirm that...
  15. Kalliope

    Cochrane ME/CFS GET review temporarily withdrawn

    @Trish you give great contributions to the debate. Thank you.
  16. Kalliope

    Cochrane ME/CFS GET review temporarily withdrawn

    South China Morning Post: Scientists appalled as journal withdraws ChronicFatigue study that prescribed exercise, after patient-activist complaints A respected science journal is to withdraw a much-cited review of evidence on an illness known as chronic fatigue syndrome (CFS) amid fierce...
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