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    USA: News from Solve ME

    Solve Announces Funding for Ramsay Grant Awardees Dr. Jo Cambridge and Dr. Dana Yelin Solve has awarded research funds to Dr. Jo Cambridge and Dr. Dana Yelin, both previous Ramsay Research Grant winners who are finding new ways to treat people with Long Covid and ME/CFS. Dr. Cambridge is...
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    Global clinical trial to test existing drugs as long COVID treatments

    Rinvoq is the main drug + others as secondary/alternate. Details in video posted here on Rinvoq thread.
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    Upadacitinib (rinvoq)--could it reduce fatigue in ME/CFS?

    More info on the trial and the work of Dr Douglas Fraser on this thread https://s4me.info/threads/global-clinical-trial-to-test-existing-drugs-as-long-covid-treatments.43837/#post-604728
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    Upadacitinib (rinvoq)--could it reduce fatigue in ME/CFS?

    Here is a video by Dr. Douglas Fraser from Western Univeersity in Canada who talks about a muli-center/multi-country phenotyping and biomarker discovery project with 5561 people, 1028 patient blood samples, that has been run and discuses some findings. Drug discovery analysis has highlighted...
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    Multicentre retrospective detection of nailfold videocapillaroscopy abnormalities in long covid patients, 2025, Ginaldi et al.

    Some nailfold images taken on an iphone camera + lens attachment on X posted by a person with severe ME/CFS. The images are quite good quality. All 10 fingers done, 6 photos succeeded of which not one really normal & quite remarkable differences.Not that we can do anything with it right away...
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    Closed UK: DecodeME updates, was recruitment thread.

    I assumed the GWAS results would be all at once as Chris Ponting stated in a webinar that funding runs out in August. Follow up studies using the data generated such as the announced projects by Precision Life and University of Glasgow will follow.
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    Using HRV to Characterise PEM

    I can't say I've noticed such a trend. I am severe so that might play into it. I'm not really sure what to make of HRV variantion. For seven day average I like to use a spreadsheet calculation that covers 3 days before, today, 3 days in future. That way the 7 day average is aligned to the data...
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    Video, Emerge Symposium 2019: Dr Neil McGregor, An Omic Analysis of ME/CFS – an Assessment of Potential Mechanisms

    I was excited at the time the Cornell paper came out and I looked at the raw data in Excel and saw the PFOS/PFAS numbers high. However in some later metabolomics datasets it wasn't highlighted. I did mention this to an ME/CFS researcher who studied PFOS/PFAS during their Phd but I don't think it...
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    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    Sorry, I was going to add this graph from 9:55 in the video to explain what they mean by truncated but I ran out of energy to post it. This is a reduced number of patients n=41 that also had insulin data and the slide explains the characteristics of the different responses. Insulin response is...
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    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    It is confusing. Does anyone know if there was a paper published on the Don Lewis clinic glucose tolerance testing? Slide at 11:00 showing: * 641 of 777, 82%, ME/CFS patients from Don Lewis who had a glucose tolerance test with complete data had a truncated glucose tolerance test response...
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    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    Here is the thread for the McGregor paper. Post-Exertional Malaise Is Associated with Hypermetabolism, Hypoacetylation and Purine Metabolism Deregulation in ME/CFS Cases, 2019, McGregor et al And a thread for a Swedish follow up study Sweden: ME/CFS lactate, glucose and hypoxanthine Status ...
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    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    I need to rewatch the video on the actual glucose response test measurement results. I did find this 2019 McGregor paper (link) which reported a 1.2-fold rise in glucose in the results section. The paper also highlights the glucose : lactate ratio in PEM as changed.
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    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    I find it fascinating that two of the three main biological findings in this paper are the same as highlighted by Neil McGregor in his 2019 OMF /Emerge presentations. 1. Altered Glucose repsonse / Insulin response 2. Liver changes. Even more interesting is that for (1) they used completely...
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    Trial Report Low Dose Rapamycin Alleviates Clinical Symptoms of Fatigue and PEM in ME/CFS Patients via Improvement of Autophagy, 2025, Ruan et al

    One of the comments about the video states they got much worse when taking Rapamycin and took a long time to get back to baseline. I commend that person for speaking out. Note : doesn't say in trial so probably an independant.
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    ME/CFS Research Chatbot

    Google AI is much better
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    What makes a disease curable?

    Stanford did a pilot study and it required a LOT of tubes of blood to get enough of the rarer T cell types to analyse further. This could have an impact on patients selected. Mark Davis presented on a "autoimmune" CD4 T cell type they were looking at and they came to the conclusion a...
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    Trial Report Low Dose Rapamycin Alleviates Clinical Symptoms of Fatigue and PEM in ME/CFS Patients via Improvement of Autophagy, 2025, Ruan et al

    Jarred Younger video 061 - Low dose rapamycin for ME/CFS Main points * It's a huge no-no to not count drop-outs in your statistics. * This is a paper for researchers, not patients or clinicians. * It should in no way change prescribing habits.
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    WGS (whole genome sequencing) findings possibly linked to mitochondrial/metabolic dysfunction – anyone with similar results?

    It's interesting that Invitae doesn't offer testing for SLC25A5 but does many other SLC25Ax genes. Not sure how one would go about verifying the variants found with clinical grade sequencing.
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