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    Video : Dr. Laurel Crosby on Rare Disease Innovation at Stanford Genome Technology Center, 2025

    Video : Dr. Laurel Crosby on Rare Disease Innovation at Stanford Genome Technology Center, 2025, Presented at UC Berkeley Rare Disease Workshop Description : Join Dr. Laurel Crosby in this standout keynote ✨ from the March event at UC Berkeley, where she unveils a bold vision for rare disease...
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    Brain and muscle chemistry in ME/CFS and long COVID: a 7T magnetic resonance spectroscopy study, 2025, Godlewska et al

    Thanks to @ME/CFS Skeptic excellent summary write-ups I was able to make the following comment on the video. I'm happy Dr Younger was receptive to the information. Thanks again @ME/CFS Skeptic for providing the summary! Comment on video: Some comments on the paper (Notes from ME/CFS Science on...
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    Brain and muscle chemistry in ME/CFS and long COVID: a 7T magnetic resonance spectroscopy study, 2025, Godlewska et al

    Video from Jarred Younger discussing this study (I have not watched): 065 - Elevated brain lactate in ME/CFS chronic fatigue (converging evidence) Description : A new paper is out using a powerful 7 Tesla magnetic resonance imaging (MRI) scanner to find brain abnormalities in myalgic...
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    Addressing The Diagnostic Void Faced By Patients With Deteriorative Symptoms

    I often wonder this too. The issue is that there is no medical specialty for ME/CFS, so no biomedical clinics, no tracking of deterioration, no statistic on damage arising to organs, bones, and tissues. No solving of individual cases that can hint at pathways involved in others. The biggest...
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    Addressing The Diagnostic Void Faced By Patients With Deteriorative Symptoms

    Interesting discussion. While I have permanently worsened from (1) pushing too hard I have also worsened for what seems like (2) no reason at all, and also from a (3) TDAP vaccine. I also have (4) seasonal variation. Because (1) is discussed a lot it seems like the other reasons are not talked...
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    What (maybe home-based) useful new research could be done using the DecodeME cohort?

    Here is an example of a project. It's been running a number of years - people wear a smart watch for 3 months. This is a research team very experienced in using smartwatch data so lets see if they come up with anything and how useful the smart watch data is. I have not seen any updates for a...
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    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    Can we learn anything from Macrophage Activation Syndrome that might be applicable to the hypothesis? This is a syndrome with positive feedback between macrophages and T cells causing activation and TNF-alpha and INF-gamma release. If NK cells are normal the "inflammation" can be somewhat...
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    Personal project: Sick Genes, a website for compiling significant gene findings from studies on ME/CFS and other conditions

    GitHub works well for sharing the code. Just because someone sends a PR it doesn't mean you have to implement it! But it could be a way for others here to help you on certain tasks. To start with you could make it a private repository and play with the features yourself. And then if/when happy...
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    Should we change our name: 'ME/CFS Skeptic'?

    Yay! I'm really loving your social media explanations of the papers you look at these past few months. You guys have a real skill in condensing down the information into an easy to understand realistic explanation. Well done!
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    Personal project: Sick Genes, a website for compiling significant gene findings from studies on ME/CFS and other conditions

    I assume they are referring to differential chromatin accessible, where differential is either between PwME vs Control, or before and after CPET difference. From the paper: That is a rather technical paper and I agree it's difficult to understand. Well done for trying. According to AI in...
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    Research news from Bhupesh Prusty

    A follow on tweet was very interesting where he posted this link that shares many publishers use AI peer review of submitted papers and thus submissions can be rejected very quickly. https://www.nature.com/articles/d41586-025-02172-y He then followed up with an example where the AI peer review...
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    Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In [ME/CFS],2025, Lee, Cliff et al

    This was the tweet contents by @Susan K in case you can't access: Standard flow cytometry doesn't involve cell sorting like the magnet sort FACS. So the latter isolates a much more specific population, & allows sorted cells for further analysis like cytokine secretion Video describing...
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    Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity In [ME/CFS],2025, Lee, Cliff et al

    When I asked Drs Selin/Gil about double positive CD4+CD8+ cells they said that you need to sort the cells first before analysing and that is why the CureME immune paper did not detect differences. This was the post where I provided more information...
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    Abnormal arginine-vasopressin secretion and water metabolism in patients with postviral fatigue syndrome 1993, Bakheit, Behan et al

    @MelbME I think water metabolism was an interest of yours. Tagging in case of interest.
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    Upper Airway Resistance Syndrome (UARS): a common underlying cause for all "chronic complex illnesses"? (ME/CFS, fibro, GWI, etc.)

    It looks like inspiratory flow limitation is very common in the normal population. Evidence without comparison to proper controls are meaningless. Inspiratory Flow Limitation in a Normal Population of Adults in São Paulo, Brazil This limitation almost always happens in POTS studies for...
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    Available ME/CFS datasets

    Perhaps Wenzhong Xiao might have a list as he is the OMF lead for computational biology and he had looked at different datasets. You could try emailing him at MGH. Here is the LINK to his profile that has his contact info.
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    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    I don't think so, and the hypothesis doesn't cover symptoms. However I think it's worth more discussion, perhaps it's own thread? I wonder if drug sensitivity could be related to sensitivity to nerve signalling changes. There was discussion that the nerves could be affected by T-cells/IFN-gamma...
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    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    Perhaps dendritic cells might be better suited than macrophages for migrating to interact with T cells upon engagement of FcγRI by "junk" antibodies. From what I read they travel to the lymph nodes and spleen to engage with T-cells upon "stimulation". But then I go back to the recent Cambridge...
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