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    Monitoring Carotid Blood Flow Using In-Ear Wearable Device During Tilt-Table Testing, 2023, Hemantkumar Tripathi MD et al

    What we have been told is they are also developing and testing to get approved as a medical device. It’s a work in progress. What it is, is not what it will be. They also purposely chose not to make the current version (not the medical version) not comparable to medical measurements because...
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    Maeve Boothby O'Neill - articles about her life, death and inquest

    When my daughter (35) was born I was told she had to be on her stomach so she wouldn’t asperate her own spit up. Clearly this was a presumption because my son was born after the change was to put infants on their backs to prevent SIDS. Lots of advice and practice that isn’t based on actual...
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    Trial Report Blood Flow To The Head Is Reduced in a Patient With Myalgic Encephalomyelitis With Confirmed Post-Exertional Malaise, 2024, Lee

    Jonathan Edwards I clearly misspoke when I said vein. I am not a scientist or a doctor. I am a very, very sick person desperately trying to save myself. I am in the beta trials and can share my experiences as a sick person that’s all. I have been to their lab and met the people involved. I...
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    Trial Report Blood Flow To The Head Is Reduced in a Patient With Myalgic Encephalomyelitis With Confirmed Post-Exertional Malaise, 2024, Lee

    No. It does not supply the brain. They never claimed it did. It does however measure blood getting to that part of the body. There is no non-invasive way to measure blood to the brain.
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    Trial Report Blood Flow To The Head Is Reduced in a Patient With Myalgic Encephalomyelitis With Confirmed Post-Exertional Malaise, 2024, Lee

    It’s not the ear it is the vein that is being used to track blood flow to the brain which is only found in the left ear. It is the closest that can be had outside the brain itself. Presentations, I believe, are to attract funding for the kind of research we all want and need. I expect that...
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    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    Well I go through periods where I am endlessly over budget but currently have managed to stay under some days alot under others barely. And yet continue to get worse. What I am not doing is crashing. I look forward to seeing what the research shows given that there is so much data coming in...
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    Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

    I did not. It showed up years later.
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    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I was thinking of it as a way to figure out that magical baseline and learn ways to stay under it.
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    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    I’ve seen a lot of guidelines and listened to various people talking about using monitoring to help with pacing and I have been and will continue to use the Visible app but my question is has there been data showing that this kind of monitoring does in fact increase the effectiveness of pacing...
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    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    https://www.youtube.com/live/zWOLxwwp75I?si=MtFr1MeQC7bSLoGY i’m not sure if I did this correctly. Interview with Harry Leeming. He talks about on going changes to the software and how research data is being used. Interesting to me is how they are finding HRV is working differently for...
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    UniteToFight2024 Long Covid and ME/CFS conference, 15th and 16th May 2024

    I’m watching Todd Davenport's presentation and he just addressed Effort Preference. He believes his test clarifies that this is NOT happening. CPET test.
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    Monitoring Carotid Blood Flow Using In-Ear Wearable Device During Tilt-Table Testing, 2023, Hemantkumar Tripathi MD et al

    I attended an open house yesterday. This device is amazing. I’m also impressed at the attention to detail of the people developing this. They are working on connections with researchers who are also excited based on what I have read.
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    2024: NIH National Institutes of Health - ME/CFS Symposium on Intramural study - 2 May

    Honestly I’m not sure I would trust my memory - I couldn’t believe that right out the gate they cited the part of the research that was most discussed here. I shut it down for a few minutes to calm down, negotiate with myself about if I wanted to hear more. When I listened in again I heard an...
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    Monitoring Carotid Blood Flow Using In-Ear Wearable Device During Tilt-Table Testing, 2023, Hemantkumar Tripathi MD et al

    I’m attending an open house this weekend unless my body refuses. I will be in the first group who are giving feedback - beta trials (ish).
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