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    Achievements of Artificial Intelligence (AI)

    Identifying and then successfully using drug X for disease Z is a conceptual insight. Much of what humans call 'reasoning' is 'guessing' based on necessarily flawed and incomplete data anyways?
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    What do you think needs to be tested in the blood (plasma, PBMCs, etc) of patients?

    I think hypoxanthine is relevant, but it's not easy to test reliably. Elevated values, I think might be a very strong indicator (but not a diagnostic biomarker due to a lack of specificity) for having ME.
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    Donating and fundraising by people with ME/CFS - discussion thread

    What do you mean by 'necessarily'? I mean obviously it will not scale necessarily. The point is that we are very far from whatever the saturation point will be for what can maximally and safely be achieved through fundraising by patients and their loved ones. Furthermore, charities most often...
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    Donating and fundraising by people with ME/CFS - discussion thread

    That's a bad reason for not campaigning for fundraising, imo. It's actually the worst of all reasons, because it's exactly those people that need funds raised the most. I am a very severe patient myself, so I fall in this group, at least from a physical capacity POV. I said twice not...
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    Donating and fundraising by people with ME/CFS - discussion thread

    Who pressures anyone to do anything? How would this even be possible? Nobody has to do anything, obviously.
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    Donating and fundraising by people with ME/CFS - discussion thread

    Lack of private funding is the main impediment to change for ME patients. The first thing that must happen to achieve that change is a shift in mindset, a vibe change needs to happen in the community. PwME, and maybe even more importantly their loved ones, need to understand that they can bring...
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    How can we improve the quality of ME/CFS research and clinical care?

    Hi everyone, I just wanted to say that whatever you’re doing or planning to do to get the information from S4ME out into the “real world,” I’m all for it. I think it’s so important to amplify the work being done here, and I’d love to support that. To help with this, I’d be happy to offer a...
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    PEM-like descriptions and accounts in non-ME illnesses

    Can you say more about this? Where did you get this info from? I am specifically interested in the 'after resting' bit.
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    TANGO2: A Rare but Important Mutation 2024 Walters et al

    If your urine really is a dark brown (please google it for comparison) then that is essentially always an emergency. If it looks like Cola, you have to go to the hospital.
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    Should we change our name: 'ME/CFS Skeptic'?

    ME/CFS Review Inform ME(/CFS)
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    Cardiac Output–Cerebral Blood Flow Relationship Is Abnormal in Most ME/CFS Patients with a Normal Heart Rate & Blood Pressure ..., 2024, van Campen

    I am pretty sure this is relevant. On the other hand, I would be somewhat surprised if this is specific to ME/CFS. The degree of dysregulation and of the resulting hypoxia might be somewhat specific, though? This research needs replication, but the results should hardly surprise anyone. If...
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    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    Thank you, Chris. What is the situation in regards to funding? I am not sure what is the situation post Brexit, but could you apply for EU funding for this project? I vaguely remember reading something about how Starmer (?) wants to reestablish eligibility for UK based projects for HORIZON...
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    Blood Glucose and Insulin Resistance

    ME patients can't utilize sugar and fats normally, are we surprised to find 'insuline resistance?' If you eat sugar, and your cells can't utilise it (for potentially a whole bunch of reasons) your BS will rise. Increased BS doesn't automatically indicate IR though, it also doesn't help that IR...
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    ME Hypothesis- Noradrenergic Neuron Dysfunction

    Thank you for your insights. A few follow-up questions came to mind: 1. Are there specific methods or approaches to test your hypothesis? 2. How does the hyperadrenergic form of POTS integrate into your model? Specifically, considering that hyperadrenergic POTS is characterized by elevated...
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    Bridging Dx Gap for [hEDS] and [HSD]: Evidence of Common Extracellular Matrix Fragment in Plasma Potential Biomarker, 2024, Ritelli et al

    If the results are real, you were wrong about “all that pseudoscience” that led them there, I guess.
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    Inhibition of IL-11 signalling extends mammalian healthspan and lifespan. (Widjaja, Cook, et al 2024)

    Absolutely, the CF community fundraised billions of dollars privately to get there. There are no miracles.
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    “Adrenaline Rush” phenomenon— What helps?

    I think you talked about ‘very delayed PEM’ before, but can’t find it, what is that to you? Thank you!
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