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    Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

    My understanding of the whole discussion is that is precisely not how things work. My understanding is that the diagnostic process is more complicated than that and always includes signs of exclusions and inclusions. Additionally we have once again seen in the intramural study why exclusion is...
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    Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

    If one does identify pathologies that seems to be the more likely scenario to me. However, for the previously mentioned studies it would appear that this scenario is unlikely to be the case as we have seen over and over again, as it is far more likely that those studies have neither identified...
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    Biomarkers for ME/CFS - discussion thread on the next steps for testing biomarkers, and why we need them

    The point that is being made I believe, is that we don't need a diagnostic test because we already have one: The diagnosis itself (for example via the CCC). If we were to have a diagnostic test that is perfect, that is to say 100% accurate, i.e. 100% sensitive and 100% specific, we wouldn't have...
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    What stops you getting involved in Patient and Public Participation in research?

    I recall having seen only very few interesting projects in the past involving Patient and Public Participation (PPI) aspects, but before even being able to consider whether it was something I was even able to contribute something to, I have typically found that the geographical hurdles would...
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    Cardiopulmonary and metabolic responses during a 2-day CPET in [ME/CFS]: translating reduced oxygen consumption [...], Keller et al, 2024

    Would be good for someone with a background in exercise physiology to weigh in on this. Cardiopulmonary Exercise Test Methodology for Assessing Exertion Intolerance in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome writes I have had a look at “Cardiopulmonary Exercise Test Methodology for...
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    Cardiopulmonary and metabolic responses during a 2-day CPET in [ME/CFS]: translating reduced oxygen consumption [...], Keller et al, 2024

    Sure and there will be problems related to "cognitive function/cognitive PEM" that for example wouldn't be picked up, but at least for each individual there should be some consistency right? That is to say "are you feeling like you are experiencing more PEM on the first test vs second test"...
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    Cardiopulmonary and metabolic responses during a 2-day CPET in [ME/CFS]: translating reduced oxygen consumption [...], Keller et al, 2024

    The easiest thing for such studies to do would in my eyes be to ask patients "are you currently experiencing PEM" and rate it on a scale of 1-10 (the scale is a bit arbitrary and someone probably has a better idea, but the idea would be to get some notion for where the patients were during the...
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    Are there many conditions that have the very severe exhaustion where someone can barely move that can be seen in ME/CFS? Can it help with diagnosis?

    I'm pretty sure it could get this bad in an abundance of conditions if those are left untreated, typically they might come with some other symptoms as well (but so does ME/CFS). Luckily those conditions are often treated and research looking at "how bad could this get if we don't treat this"...
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    Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity, 2024, Beentjes, Ponting et al

    Similarly importantly you'd expect that in severe patients that the things that were used to model inactivity should be more abundant. In which case you'd have established that you did indeed have a good model of inactivity in the first place and should it not be the case it would put the model...
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    Is PEM a disturbance in the transmission of sensory information?

    I'm not entirely sure. I think there is a large difference between vague and meaningless descriptions of "chronic fatigue" vs ME/CFS as defined for example by the CCC and similarly other descriptions of delayed PEM appear to be rather specific. Of course there are still various problems, but...
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    Less Deformable Erythrocyte Subpopulations Biomechanically Induce Endothelial Inflammation in Sickle Cell Disease (Caruso et al 2024)

    Yes. I know that the study in cooperation with the MPI that studies RBC deformability is part of the BC007 reCOVer study at Erlangen (where they are giving BC007, testing for aabs via rat hearts, taking MRIs, OCTAs, testing for RBC deformability etc), and which from what I've heard won't be done...
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    Is PEM a disturbance in the transmission of sensory information?

    I think if one leaves away the term "PEM", you would have described something that would apply to most of the rest of the world. Students prefer to do study in libraries rather than in subway stations, seminars tend to take place in classrooms rather than at raves, athletes tend to perform...
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    Dr Avindra Nath, NIH USA, views on ME/CFS and Long Covid

    I am not up-to-date with all the different current testing procedures. However, Marques writes in her paper "Persistent Symptoms After Treatment of Lyme Disease" For the NIH that would seemingly make population recruitment as done for ME/CFS patients in the intramural study, even harder and...
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    Dr Avindra Nath, NIH USA, views on ME/CFS and Long Covid

    Thanks for pointing that out. However, the problem with the low participant number in the intramural study for ME/CFS patients, is not that there is an insufficient amount of patients that meet the CCC or similar or that there aren't already existing cohorts of ME/CFS patients, but rather the...
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    Less Deformable Erythrocyte Subpopulations Biomechanically Induce Endothelial Inflammation in Sickle Cell Disease (Caruso et al 2024)

    I can't remember any details, but I believe Hohberger in collaboration with Martin Kräter (from the Max Planck Institute/Guck Lab) had been looking at exactly this in both LC and ME/CFS (here is a small press...
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    Dr Avindra Nath, NIH USA, views on ME/CFS and Long Covid

    I'm not sure whether that should be surprising. The ME/CFS cohort required 484 people to end up with 17 PI-ME/CFS study subjects (edit: that is not entirely correct 484 inquires includes those inquires about participating as HV, I currently don't know how many people applied as ME/CFS patients...
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    Australia: News from Griffith University, National Centre for Neuroimmunology and Emerging Diseases (NCNED)

    When it comes to Griffith University findings I do think several other groups have tried to replicate the findings but failed. Most notably the recent intramural study looked at NK cells without finding anything. Davis also looked at NK cells I believe, so did this study and this study, Klimas...
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    Restoring hippocampal glucose metabolism rescues cognition across Alzheimer’s disease pathologies Minhas 2024

    In mice... Must be the 100th time Alzheimers has been solved in mice...
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    Persistent Autonomic and Immunologic Abnormalities in Neurologic Post-Acute Sequelae of SARS-CoV2 Infection, 2024, Goldstein, Walitt, Nath+

    One of the possibly more interesting findings in the intramural study, were the catecholamine findings. They don't report differences in norepinephrine here, but quote the intramural study findings with It seems valuable that they report More stability and follow-ups within LC studies will...
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    Do you think that any Long Covid researchers have made any significant findings about ME/CFS?

    I think the team at the Amsterdam UMC surrounding Wüst and van Vugt certainly might have, because right now the findings are still rather speculative, haven't been replicated and could easily have been due to things related to sampling and could be noise rather than anything else. These...
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