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  1. Chandelier

    News from Austria and Switzerland

    https://www.sn.at/panorama/oesterreich/me-cfs-koenigsberger-ludwig-wir-183067384
  2. Chandelier

    News from Germany

    https://www.moz.de/lokales/bernau/freitod-in-bernau-leben-in-dunkelheit-und-stille-warum-marc-kirch-seinen-suizid-plant-78247849.html AI summary:
  3. Chandelier

    News from Germany

    https://www.uniklinik-ulm.de/aktuelles/detailansicht/long-covid-und-me-cfs-bei-kindern-versorgung-verbessern-forschung-staerken.html
  4. Chandelier

    News from Germany

    https://www.abendblatt.de/hamburg/hamburg-nord/article409526110/corona-hamburg-theo-bekommt-trotz-bettlaegerigkeit-pflegegrad-null-er-ist-halbtot.html
  5. Chandelier

    Using Heart rate monitoring to help with pacing.

    I just found this free app for the Apple Watch that measures the heart rate continuously: BeatWatcher You can set your desired threshold and once that is reached it creates a haptic and/or audio feedback.
  6. Chandelier

    News from Austria and Switzerland

    Longer article on daslamm.ch: https://daslamm.ch/chronisch-krank-und-permanent-angezweifelt/ The article also mentions this study: Health system support among patients with ME/CFS in Switzerland, 2023, Tschopp
  7. Chandelier

    News from Germany

    Very severe patient story covered in Schwäbische: https://www.schwaebische.de/regional/oberschwaben/ravensburg/in-neuseeland-veraenderte-eine-krankheit-valescas-leben-doch-nicht-nur-die-gesundheit-macht-ihr-zu-schaffen-3830289
  8. Chandelier

    News from Germany

    Bundesgesundheitsministerium on Instagram asks for your questions. There are already a couple about ME/CFS. Don’t forget to like them:
  9. Chandelier

    United Kingdom: ME Research UK (MERUK) News

    https://www.meresearch.org.uk/altered-neurometabolite-levels-in-the-brains-of-people-with-me-cfs/ Altered neurometabolite levels in the brains of people with ME/CFS 13 August 2025 Kiana Kothe is a PhD student working with Prof. Zack Shan at the University of the Sunshine Coast on an ME Research...
  10. Chandelier

    Famous people diagnosed with neurological diseases

    https://apnews.com/article/tennis-monica-seles-health-myasthenia-gravis-b36b3d132edc3e7eecde19ca759e36ff Tennis star Monica Seles reveals her diagnosis with myasthenia gravis
  11. Chandelier

    DecodeME in the media

    Austrian newspaper Der Standard: https://www.derstandard.at/story/3000000283013/womoeglich-genetischer-hintergrund-von-mecfs-identifiziert
  12. Chandelier

    News from Germany

    Interview in the big german newspaper DER SPIEGEL: https://www.spiegel.de/gesundheit/diagnose/me-cfs-eine-psychotherapeutin-erklaert-weshalb-die-krankheit-so-oft-verkannt-wird-a-a65d8a5f-c658-4a12-958c-99ed59fa0583
  13. Chandelier

    DecodeME in the media

    Article in the german Deutsches Ärzteblatt (paper for medical doctors, requires account): https://www.aerzteblatt.de/news/mecfs-hinweise-auf-genetische-pradisposition-gefunden-a1027752-b2fe-4989-8071-433a15b45788
  14. Chandelier

    News from Austria and Switzerland

    https://www.meinbezirk.at/muerztal/c-lokales/ein-spendenlauf-fuer-die-krankheit-mecfs_a7516048
  15. Chandelier

    Long-term air pollution exposure and incident dementia, 2025, Best Rogowski et al.

    https://www.thelancet.com/journals/lanplh/article/PIIS2542-5196(25)00118-4/fulltext Summary Background A rapidly evolving evidence base suggests that exposure to outdoor air pollution is a risk factor for the onset of dementia, with an upturn in publications since 2022. We sought to synthesise...
  16. Chandelier

    DecodeME in the media

    Thanks for the feedback. Seems like the answers were given in seconds. Here’s what the AI answered in hh:mm:ss: 2 and 3 indicate that one might still be wrong but that’s all the investigation my energy allows for now.
  17. Chandelier

    DecodeME in the media

    That’s a potential question for AI. Here’s my prompt: https://www.perplexity.ai/search/https-youtu-be-cgumcb-yiaa-wha-XYJN8tpZREOd50lBlvDyrQ#0 And the answer:
  18. Chandelier

    How do you pace?

    I do the exact same thing! And if I should forget it once because the start was already so fun, I‘ll have to pay dearly. Unfortunately, splitting a phone call into 3x 15 mins on the same day doesn’t work neither. Slight side-note but I‘m currently experimenting with social isolation. My current...
  19. Chandelier

    How do you pace?

    I might very well fall into this category, too. However, I feel in this special case where you have to actively decide to stop your (whatever tiny bit of) activity and rest, the target group becomes basically everyone. Of course I‘m speaking from my perspective close to the severe side. There...
  20. Chandelier

    How do you pace?

    I use a very similar technique that I call the 5-10-15 technique. Basically, the main challenge for me to start resting is, well, transitioning into it: Giving up holding onto whatever small activity of life I I‘m taking part in… and let go, sliding into the void of semi-sleep. To ease into this...
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