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  1. Chandelier

    DecodeME in the media

    I got the same response from a GP who visited me this week. Nothing’s gonna change until something huge enough is released to get this massive inertia rolling away.
  2. Chandelier

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Maeve‘s mother was interviewed on the LBC phone-in show hosted by Natasha Devon from yesterday. AI transcript:
  3. Chandelier

    DecodeME in the media

    LBC phone-in show hosted by Natasha Devon from yesterday. AI transcript:
  4. Chandelier

    Maraviroc treatment for hospitalized participants with non-severe COVID-19…: a randomized, proof-of-concept clinical trial, 2025, Gasca-Capote et al.

    Abstract Background: Therapeutic options for hospitalized people with COVID-19 remain limited, especially for people with non-severe COVID-19 at risk of progression. The anti-inflammatory role of maraviroc, a CCR5 antagonists, makes it a good candidate for therapeutic strategies for COVID-19...
  5. Chandelier

    Lower risk of dementia with AS01-adjuvanted vaccination against shingles and respiratory syncytial virus infections, 2025, Taquet et al

    This is the first paper that I post here. Please let me know if there’s any potential for improving the structure or if the subject is too far fetched for this forum. Thank you!
  6. Chandelier

    Lower risk of dementia with AS01-adjuvanted vaccination against shingles and respiratory syncytial virus infections, 2025, Taquet et al

    Authors: Maxime Taquet John A. Todd Paul J. Harrison Abstract AS01-adjuvanted shingles (herpes zoster) vaccination is associated with a lower risk of dementia, but the underlying mechanisms are unclear. In propensity-score matched cohort studies with 436,788 individuals, both the...
  7. Chandelier

    Severe ME Day, August 8 2025 and and Severe ME week

    I‘m very impressed by the quality of your production. Thank you very much for your work of art!
  8. Chandelier

    Closed UK: DecodeME updates, was recruitment thread.

    I‘m so thankful to everyone involved who made this massive study a reality!
  9. Chandelier

    Well known, famous people reported to have Lyme Disease.

    Skateboarder Dan Corrigan (also living in Los Angeles). Not super famous but he uploads daily to YouTube and gets around 20k views. He also talks about his health struggles publicly. See this recent scene for example: Transcript (edit: formatted and highlighted symptoms)
  10. Chandelier

    Patient led measure of outcomes

    Time spent laying down
  11. Chandelier

    AI-driven multi-omics modeling of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, 2025, Xiong et al.

    Published today: https://www.nature.com/articles/s41591-025-03788-3
  12. Chandelier

    News from Germany

    Source: https://www.zeit.de/politik/deutschland/2025-07/me-cfs-karl-lauterbach-forschung-investition
  13. Chandelier

    Using Heart rate monitoring to help with pacing.

    Thanks, I checked it out. Seems to be subscription based, $20/year. I wonder how your current app compares to Heart Graph by Smoky Cat Software Ltd. It also allows to set min and max heart rate and you can enable an audio alarm. From what I remember from the reviews, all the Apple watches had...
  14. Chandelier

    Using Heart rate monitoring to help with pacing.

    I agree. I find the chest strap uncomfortable while laying in bed, so I only use it on special occasions. The Quantified Scientist on YouTube has nice slides that compare the accuracy of different smartwatch models. I wouldn’t buy a new one without first consulting his slides. Especially after...
  15. Chandelier

    Using Heart rate monitoring to help with pacing.

    Just as a side note: My Fitbit Charge 5 is really bad at measuring heart rate spikes. Here’s a comparison with my Polar H10 Chest strap. According to The Quantified Scientist on YouTube, the H10 is the gold standard for measuring heart rate at home.
  16. Chandelier

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    I agree, you might be onto something. Does he mention it on his LinkedIn page?
  17. Chandelier

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    This bio from infectiouscongress.com/ mentions the following: biolife-publisher.it also mentions that time period. His former boss, Professor Theoharides, has a website called mastcellmaster.com.
  18. Chandelier

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    Here‘s an english translation. What a hellhole of a „scientific journal“:
  19. Chandelier

    Priced out: Some Long COVID and ME specialists charge high prices for concierge care, The Sick Times

    They started their podcast on Patreon for paying subscribers. Then made the content available for free and they are now in the process of moving everything to their YouTube channel. New episodes are released directly on YouTube.
  20. Chandelier

    Priced out: Some Long COVID and ME specialists charge high prices for concierge care, The Sick Times

    Yeah, from what I gather, their magic pill is the „septad“. It’s a diagnostic process that’s explained in more detail in this post over at HealthRising. They also did an entire episode about it on their Patreon, which they made freely available a few months back. They are currently in the...
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