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    2024: USA NIH NINDS ME/CFS Research Roadmap - now published

    Good idea i.e. there may be circumstances where it's useful to highlight the rational for a particular suggestion.
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    2024: USA NIH NINDS ME/CFS Research Roadmap - now published

    I received this reply from NIH/Vicky* - not actually surprised i.e. it's consistent with my impression of Vicky - pragmatism +++. Hopefully I'll be pleased by the recommended options! Not sure I'll try to add anything since I've sort of covered immune stuff by reference to Maureen Hanson's talk...
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    Phenotypic characteristics of peripheral immune cells of ME/CFS via transmission electron microscopy: A pilot study, Jahanbani et al, 2022

    Decided I'd email this to Karl Morten & Dr Jiabao Xu - "Hi Karl, Fereshteh Jahanbani posted a link to this paper* on Facebook; there is a reference to Raman**. Seemed to be a positive response to Jiabao's NIH talk - so hopefully NIH will fund further work on Raman. Regards -- ** "Hence...
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    Phenotypic characteristics of peripheral immune cells of ME/CFS via transmission electron microscopy: A pilot study, Jahanbani et al, 2022

    I wonder if Raman spectroscopy would be useful here - "Speaker 4: Single-Cell Raman Technologies for Diagnosis and Investigation 25 of ME/CFS Immune Cells - Jiaboa Xu" https://event.roseliassociates.com/me-cfs-research-roadmap/recordings/
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    2024: USA NIH NINDS ME/CFS Research Roadmap - now published

    OK - you don't mind if I highlight that they [NIH] have offered to do this?
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    2024: USA NIH NINDS ME/CFS Research Roadmap - now published

    Interesting - did you have "special circumstances" (apologies you may have explained already)? I think the pragmatic approach they're adopting with you is good - I'd like to have the same!
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    2024: USA NIH NINDS ME/CFS Research Roadmap - now published

    Oh, I think I understand, my mistake - original deadline was Friday 5 pm ET/10pm GMT - your clocks changed over the weekend, so the new deadline was Monday 5 pm ET i.e. 9pm GMT.
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    2024: USA NIH NINDS ME/CFS Research Roadmap - now published

    Idiot - I missed the deadline! " Thank you for your feedback, ---. IdeaScale closed at 5:00 pm ET yesterday, so your comments were not added to IdeaScale. They will be included in the information that goes to the Working Group of Council as they finalize the report for the NINDS leadership...
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    2024: USA NIH NINDS ME/CFS Research Roadmap - now published

    Forgot to add "Gut-Immune-Metabolic Interplay in ME/CFS - Armin Alaedini, PhD; Columbia University" Some of Armin's immunological results seemed to be statistically significant & counterintuitive (response leaky gut?). Overall I thought there was a lot more: 1) evidence to work from [e.g...
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    2024: USA NIH NINDS ME/CFS Research Roadmap - now published

    Emailed this at "9:58 PM" (UK time)*. My wife told me to do it earlier - why do I keep making the same mistakes (re time management)! My keyboard doesn't have "M" & "n" - some typos! Forgot to indicate whether I wished to have my name published (or indeed include my address etc.) - kind of...
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    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    Listened to the talk on Raman spectroscopy - looks promising as a potential diagnostic tool. Hoping NIH will fund the necessary further investigation. Interestingly - tryptophan/aromatic (ring structure) amino acids were highlighted - they've turned up elsewhere e.g. Chris Armstrong's work...
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    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    Noticed Hanson mentioned Karl Morten's (single cell) Raman spectroscopy work - are they cooperating?
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    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    I listened to some of this presentation - I'm reluctant to express an opinion - not really qualified to --- but! Alaedini - I thought Alaedini talk was interesting - he produced some findings which were unexpected/counterintuitive - I think Jonathan reckons you should pay attention to those...
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    Making a 'Charter for Ethical ME/CFS Research'

    Yea, seems to go on & on --- self reported outcomes in unblinded studies. Researchers should bid for enough money to include objective outcome indicators; those responsible or public grant allocations (ultimately elected politicians - MPs in the UK) should require that applications which as...
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    UK: The Clinical Post COVID Society

    Having read Jonathan's post above, I'm reminded of this post by @SNT Gatchaman * I reckon Jonathan's right i.e. those who participate won't fit this description! *"I would however argue back with his point about not faulting clinicians because the researchers haven't given them the tools...
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    Chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS)

    More about this here: MIT Technology Review: Tackling long-haul diseases
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    UK: The Clinical Post COVID Society

    Random thought - "Dead Poet Society" came to mind - never watched it!
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    Scots scientists uncover DNA 'switch' which affects anxiety levels

    Yea sort of asks questions of those who claim that this (anxiety) is controlled by will power, positive thinking -- - some have it and some don't (i.e. will power, positive thinking -- -). Also, reminds me of Wallitt - "effort preference"!
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    Scots scientists uncover DNA 'switch' which affects anxiety levels

    Did this turn up via GWAS, whole genome sequencing---? Tagging @JonathanEdwards in case he missed this (unlikely!). EDIT - found by deleting genes (CRISPR) and looking at effect. Reminds me of an OMF talk where they found a mouse overgrooming (self harm) when they edited a gene (using CRISPR I...
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