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

    I was surprised that they noted Granzyme A and not Granzyme B. Can you remember what Jackie found regarding Granzyme A vs B? Background :
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    Steroid dynamics in myalgic encephalomyelitis / chronic fatigue syndrome: a case-control study [...], 2025, Thomas, Armstrong, Bergquist et al

    After chatting to AI I can think of no obvious reason for the profound disruptions of the links between the hormones as many of the links are based on biological processing pathways e.g. more of one hormone leads to more of another hormone in the same pathway. It seems like the feedback...
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    Updates from the UK ME/CFS Biobank / CureME team

    Dr Jackie Cliff provided an update on NIH funding concerns. Her team has had long term funding from the US NIH for research and her lab provides services for the UK ME/CFS Biobank.
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    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    Carmen Scheibenbogen and Klaus Wirth have a hypothesis on calcium overload in ME/CFS. LINK
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    Open Medicine Foundation (OMF)

    Was meant to be a joke - the horse was lying down representing PEM symbolically. At conferences people start to fall asleep, stop paying attention so he likes to lighten things up, I guess to get people to listen or remember what was said.
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    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Lucibee on X wrote : Dr Alexis Gilbert has outlined what the Final Delivery Plan for ME/CFS *should* have looked like (on IG): https://instagram.com/p/DMa8sjPMzd2/
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    UK Invest in ME conference 2025

    Disease controls, fatigue, no PEM, patients from clinic with heart disease, PAH etc who also have CPET data and are fatigued.
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    Open Medicine Foundation (OMF)

    An update on the Bioquest study starting at 10:43 in the video by Dr Jonas Berquist at IIMEC17. Currently open to suggestions on what markers to add - including immunoassays. @Andy might be an opportunity for @Chris Ponting to ask to include some protein targets for DecodeME vallidation.....
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    UK Invest in ME conference 2025

    Dr Systrom talk starting at 11:41 is very interesting. Preliminary partial data showing reduced mitochondrial biomass in muscle and / or reduced electron transport chain in some with ME/CFS. This is related to the reduced oxygen uptake see on the CPET test in a subset. Preliminary data, study...
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    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Versus Arthritis funds fibromyalgia research. Many with ME/CFS could also get / have a FM diagnosis.
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    What (maybe home-based) useful new research could be done using the DecodeME cohort?

    An ME Action email today stated that Jaime Seltzer is working hard on an unnamed big data study. I hope that means that the Crash Course study is nearing completion. This will be a good test of wearables to see what kind of information can be gleaned from them and if anything correlates to...
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    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    My hope is that if there are clear leads, we can use the contacts gained through developing this delivery plan to really emphasize the need to follow up DecodeME leads. People want to be winners, and to be seen taking action. If we have specific targets that make sense, everyone becomes a...
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    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    This This This This This This Having a clinic with interested and curious clinicians backed by researchers is key! It's one reason why I posted this video by a researcher outlining the same issue for ME/CFS as for diagnosing rare disease. GP's can't diagnose the cases properly, and the...
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    Video : Dr. Laurel Crosby on Rare Disease Innovation at Stanford Genome Technology Center, 2025

    Slide at 8:56 in video - The Venn Diagram Result How this relates to ME/CFS. Without an ME/CFS clinic to pool patients from, the researcher has no access to the doctors who look after these patients to get a full clinical picture, and it is so much harder to get patients for a study. When...
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    Video : Dr. Laurel Crosby on Rare Disease Innovation at Stanford Genome Technology Center, 2025

    The presenter Dr. Laurel Crosby is part of Ron Davis's ME/CFS team at Stanford Genome Technology Center. I thought this video was particularly interesting as ME/CFS researchers share a lot of the same problems as researchers studying rare diseases. How to tie patients and doctors to...
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