Search results

  1. Joh

    Use your Amazon Smile to fundraise while shopping

    In addition to Amazon Smile, there's also Gooding. Gooding works for over 1800 online-shops (many big ones like Deutsche Bahn, iTunes, online pharmacies, Etsy etc.) and while Amazon Smile gives 0,5% of a purchase, they give up to 8%. I have an "app" (don't know the right term in English) in my...
  2. Joh

    #RCPsychIC hosting a panel on patient engagement with Rob Howard, Mental Elf and Simon Wessely

    From the Tweets of the Royal College of Psychiatrists About Wessely's talk: Then Prof. Howard is speaking about "confessions of a dementia doubter" and refers to "dementia activists". Sounds familiar.
  3. Joh

    Harvard ME/CFS Collaboration Symposium June 8th 2019

    I'm currently listening to Dr Davis' talk. The nanoneedle has now been tested on 30 pwME and 30 healthy controls (at the time of publication it were 20 pwME and 20 hc). This screenshot shows the next plans with the nanoneedle:
  4. Joh

    Harvard ME/CFS Collaboration Symposium June 8th 2019

    Youtube playlist of the talks: https://www.youtube.com/playlist?list=PLl4AfLZNZEQPNU0GYk3crnEnbQu_cYvO5
  5. Joh

    youtuber: Have you been misled...? // What is PACE? // Medical Scandal

    Jessica's channel is amazing. I started watching it after @Esther12 started this thread a year ago (thanks!). :) There are (among other interesting topics) many great videos about disability and chronic illness, e.g. needing a carer, being disabled in school, spoon theory, independence, "are you...
  6. Joh

    ME/CFS conference in Hamburg, Germany, June 22 2019

    First pictures and a short summary.
  7. Joh

    ME/CFS conference in Hamburg, Germany, June 22 2019

    Thank you! Will keep my eyes open regarding this topic. Best wishes to you and your family member with ME!
  8. Joh

    ME/CFS conference in Hamburg, Germany, June 22 2019

    From what I've heard so far from participants it went really well (I wasn't there as I'm homebound). It was fully booked and several doctors attended. Apparently the topics were a good mix of science, advocacy and practical stuff. PwME, carers, doctors, scientists and patient advocates were able...
  9. Joh

    ME/CFS conference in Hamburg, Germany, June 22 2019

    I read the thread and I have no answer why this physician claims that it's a "standard treatment" for ME in Germany. My only explanation would be that he thinks ME is a severe psychosomatic/psychiatric condition (what wouldn't be too surprising). I've searched through German ME forums/groups...
  10. Joh

    ME/CFS conference in Hamburg, Germany, June 22 2019

    I'm the last person to defend the German healthcare system when it comes to ME (or chronic tiredness syndrome, as it's called here) – it's horrendous. But pwME are not treated with electroshock therapy, haven't heard of a single case.
  11. Joh

    ME/CFS conference in Hamburg, Germany, June 22 2019

    A ME/CFS conference takes place in Hamburg, Germany today. It's organized by the German Association for ME/CFS (their first conference). The conference is aimed at medical professionals and pwME. It's accredited for Continuing Medical Education (CME). Program - PD Dr. med. Patricia...
  12. Joh

    Mike's EU Marathons

    :emoji_military_medal::emoji_runner: Thank you! Was looking for a superhero emoji, but couldn't find one. :)
  13. Joh

    Jen Brea: My ME is in remission

    Jen Brea is answering questions on Reddit: Edit: Sorry this is so long, just posted the link :)
  14. Joh

    May 2019 - Awareness Week including Millions Missing

    @Andy has kindly already posted about this action. The fan club of Berlin football team Hertha BSC has shown its support for pwME in the Olympiastadion Berlin. I'm posting about it again, as they've now published an article in English and asked me to share. The English statement can be found...
  15. Joh

    May 2019 - Awareness Week including Millions Missing

    This is amazing! I shared with the other volunteers and everyone though this is funny. Thanks for educating the German public, please consider team Gent from now on an honorary member of #MillionsMissing Germany. :)
  16. Joh

    May 2019 - Awareness Week including Millions Missing

    Pictures from Berlin, Munich and Halle in Germany (more are being uploaded): https://meaction.smugmug.com/MillionsMissing-2019/Europe/Germany A few from Berlin The big red image says: "Imagine you life is gone. But you're still here.": Stories from severe pwME in the "black box"...
  17. Joh

    May 2019 - Awareness Week including Millions Missing

    Germany The three #MillionsMissing visibility actions in Germany – in Berlin, Munich and Halle – were amazing. :) During the last week we had more press about ME in Germany than ever before (and new press is still being released). The link above that @Sly Saint kindly posted is from the...
  18. Joh

    MillionsMissing Germany needs followers on Youtube

    We made it. Thank you! :)
  19. Joh

    MillionsMissing Germany needs followers on Youtube

    #MillionsMissing Germany now has 749 subscribers, nearly there! :) We are very grateful for your support, so that volunteers can livestream via YouTube from the visibility actions in Munich, Halle and Berlin. Link to YouTube channel: https://www.youtube.com/channel/UCEaUZZDxY72llnlHmpZ2dJg...
Back
Top Bottom