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"The study also aims to see if there's a difference in iciHHV-6 frequency between ME/CFS patients who initially had symptoms suggesting an infectious disease and those who didn't"

@forestglip I suggested about that you check out Dr Li's (Jackson Laboratory) metabolomics talk (part of the NIH metabolism webinar). There are references to xenobiotics being relevant - I'd guess products of (gut) microbial metabolism - probably not what you had in mind re "environmental...

I was reminded of Jonathan's comments re unfounded general statements "multi system" disease, ("copious" - my term) evidence of immune dysregulation, exhausted immune cells etc. However, this was really about judging the reaction to the research suggestions made in the NIH Roadmap webinars and...

Thanks - could you send a link to this?

As per Jonathan above - we don't have anything environmental to investigate! OMF looked at (toxic) heavy metals (small study - nothing) incidence of prior infections (small study - nothing) --- think Ian Lipkin looked at exposure to pathogens (larger study but still nothing). Only thing I can...

"10am ET and the Roadmap will be presented from 1:30 – 2:30pm" "1.30pm ET" is roughly 6.30pm British Summer Time? https://savvytime.com/converter/est-to-gmt

Derek Pheby [Professor of Epidemiology?] comes to mind - if there was any clear evidence, re environmental factors, then I guess Derek would have spotted the opportunity! One thing that's struck me re the "discovery" [they were testing the hypothesis] that roughly 29 out of 30 cases of MS...

I recall MEAction’s Jaime Seltzer using the term "menarche"* i.e. to describe age of onset. The only data I recall was the (fairly) famous Norwegian study** Also, I wonder if the age of onset was a factor in Jonas Bergquist doing a hormone study -- looking for hormone dysregulation? I guess the...

Not keeping up/late to the party (as usual!) - CAR-T seems a remarkable tool* - would it help re T cells i.e. are testing whether T cells are relevant ME/CFS (Mark Davis Stanford)/not? While the sort of understanding Jonathan & Jo et al developed, i.e. re rituximab/successful application RA, is...

I think it's possible to assess whether your activity is normal/average - e.g. I recall Paul Garner was challenged about claiming he was ill - someone pointed out that his posts effectively stated that he was doing more than the average person his age (maybe 500 steps was average and he publicly...

I don't follow this topic (COVID) but I hadn't heard of "cytokine storm" - it's an actual thing - if so then I guess that would differentiates COVID & ME/CFS?

One of the big game changers(?) re CBT, & exercise, type interventions is actimetry Fitbit type devices. E.g. my limited understanding is that you can get relatively good information re time spent upright i.e. as well as number of steps. In addition there are indicators like ability to...

I reckon they should just do a large sleep study i.e. using high end actimetry - then look at possible interventions and run trials on groups who have an identified problem + existing treatment already approved. See what comes out of it! Yes, there should be support systems (social security...

Tad concerned that this is black box stuff i.e. difficult to measure things that elucidate pathology/mechanism. Perhaps GWAS would provide clues e.g. genes related to infection &/or genes involved in signaling? Also, metabolomics could potentially turn up clues - apparently coverage is low in...

Thanks for the analysis - I was hoping they'd - monitor sleep and if e.g. sleep was disrupted then look at other illnesses, with similarly disrupted sleep, and ask - how much of the symptoms are common i.e. related to sleep disturbance. Yes if "X" works in a known/understood illness (with a...

Posts moved from the NIH news thread Interesting --- sleep

Merged thread Austria - best clinical infrastructure for #MECFS patients on the planet (not that difficult, I know..) Interesting - wonder what this will deliver - one to watch

I'm a bit concerned by this i.e. thought that the ME/CFS disease processes may be "completely invisible to pathological analysis" - I guess that may explain mental health diseases which are poorly understood; & (in a similar vein) I recall a scientist saying that they thought it would take a...

My post above was based on working as a technician in a veterinary research laboratory which (among other things) looked at trace minerals/deficiency diseases. Selenium deficiency (which effectively equates to oxidative stress) was one of the two main areas (cobalt/B12 was the other). This was...

Interesting, wondering if this was done as a trial i.e. biomarker (indicating oxidative stress), blinded - control group get placebo and trial group supplement?