Search results

  1. Kalliope

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    It seems like this is the most popular suggestion. But there were several versions of it, and if we kept all of them for the poll, we'd lose other suggestions. How about we see if Justice4ME wins the poll, and then continue the debate whether other versions of the slogan could work better?
  2. Kalliope

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    Yes, I think ten options is plenty anyway, as long as most agree with how I narrowed it down. I don't think a hashtag like this will ever trend, but IF it catches on among us patients and supporters, and is used over time when we donate, I hope it might reflect how many we actually are...
  3. Kalliope

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    Yes, that is what I tried at first. But turned out polls here have maximum ten answer options, therefore I reduced our list :-)
  4. Kalliope

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    In order to make a poll, we need to narrow down our list to 10 suggestions or fewer. I've tried to make a new list by removing the most similar suggestions and went from this list: #RealScience4pwME #ExploreMEScience #RealSCIENCEforME #donate4MEScience #biosci4ME #ActualScience #MEScience...
  5. Kalliope

    Changes in fatigue, autonomic functions, and blood biomarkers due to sitting isometric yoga in patients with CFS, 2018, Oka et al

    I googled "isometric yoga" and found this study from two of the same researchers from 2014. Isometric yoga improves the fatigue and pain of patients with chronic fatigue syndrome who are resistant to conventional therapy: a randomised, controller trial This trial enrolled 30 patients with CFS...
  6. Kalliope

    The Norwegian Medical Association - Subjectivity and illness

    Elling Ulvestad is a specialist in immunology and transfusion medicine, head of the Department of Microbiology at Haukeland University Hospital and professor at the Department of Clinical Science at University of Bergen. He has written a text for The Norwegian Medical Association titled...
  7. Kalliope

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    I like it as a slogan. You think it would be ok to adopt it this use?
  8. Kalliope

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    Here are the suggestions so far for a hashtag/slogan to use when replying to the biopsychosocio-crowd with a donation to the ME-cause. Thank you for all the ideas and contributions! Any other suggestions anyone? #RealScience4pwME #ExploreMEScience #RealSCIENCEforME #donate4MEScience #biosci4ME...
  9. Kalliope

    Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort - Wyller et al (2018)

    Yes. Wyller is known for promoting the view that is doesn't really matter whether you use strict criteria or not. And now he has done a couple of studies he can quote himself from in order to prove it.
  10. Kalliope

    Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort - Wyller et al (2018)

    I wonder how much money has been spent in total on the NorCapital study and these publications and what really has come out of it.. Now Wyller is doing a trial on music therapy as treatment for ME. He wants to do an LP-study as well, but it hasn't been funded yet.
  11. Kalliope

    Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort - Wyller et al (2018)

    BMJ Paediatrics open: Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort: evaluation of subgroup differences and prognostic utility Objective Existing case definitions for chronic fatigue syndrome (CFS) all have disputed validity...
  12. Kalliope

    Caretaking resources and info needed

    Dear @Kafka I am so sorry to hear about your daughter. Perhaps Emily Collingridge's book "Severe ME/CFS - a guide to living" might be of interest/use? Some of the info is most for UK patients, but a lot can also be applied to patients in other countries. As far as I know the only place to get...
  13. Kalliope

    #OMFScienceWednesday - collection of the posts

    New Science Wednesday Post from OMF. Do infections lead to lasting changes in immune or metabolic function that lead to symptoms, or is the pathogen still present? This #OMFScienceWednesday, OMF discusses recently funded research into addressing this central question in ME/CFS. Post on OMF's...
  14. Kalliope

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    Added to the list. #RealScience4pwME #ExploreMEScience #RealSCIENCEforME #donate4MEScience #biosci4ME #ActualScience #MEScience #4MEScience #GoFundMEScience #MEScienceWorks #MyalgicEncephaloAccuracy #IDonatedToMEScience #Justice4ME #JusticeForME #JustScience #JustScience4ME
  15. Kalliope

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    #JusticeforME is a great slogan, I agree. But does donation to research and the pro science bit come across?
  16. Kalliope

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    I hear you and have added it to the list :) #RealScience4pwME #ExploreMEScience #RealSCIENCEforME #donate4MEScience #biosci4ME #ActualScience #MEScience #4MEScience #GoFundMEScience #MEScienceWorks #MyalgicEncephaloAccuracy #IDonatedToMEScience #Justice4ME #JustScience #JustScience4ME
  17. Kalliope

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    I was trying to narrow down the suggestions. It was pointed out that "PWME" in a hashtag would be a second thing for people to "get". But if you want, we can bring back the suggestions with PWME. I hope within a few days we can narrow the suggestions down to around five and then vote.
  18. Kalliope

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    Wow. Thank you again for all suggestions. It is so great to have someone to throw around ideas with! I've narrowed it down and removed the suggestions with Tuller's name and those including PWME. We are then left with these suggestions. (that doesn't mean you can't come up with new suggestions...
  19. Kalliope

    News from Scandinavia

    Swedish doctor Per Julin from the ME-ward at Stora Sköndal interviewed by Vetenskapsradion (The Science Radio) about the re-analysis of the PACE-trial. Says that it shows CBT and GET are not good treatments for ME, and that ME-patients rather need to pace themselves. Language: Swedish Duration...
  20. Kalliope

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    Thank you everyone for your inputs and ideas! Ideally one short hashtag should sum up a donation to science as response to rubbish, that ME-patients are the ones who are pro science and those most supportive of research into ME, and something outsiders can understand and hopefully support...
Back
Top Bottom