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Merged thread Post on Twitter/X* re reactivating European Network on ME/CFS (EUROMENE) - noticed a question --- purpose? Ideas guys? Here's a useful discussion re purpose of original EUROMENE - @MSEsperanza "I mean, is EUROMENE really only a forum? What about the working groups on common...

Article here* noticed that they use engineered virus to look for autoantibodies - similar to the approach of the group at Yale [Aaron Ring etc. using genetically modified fungi to produce target protein]. From the press article - "They took a technique in which viruses are engineered to display...

I think there's a general point e.g. if you can't objectively measure "identity construction" then I'd suggest that the whole exercise seems pointless (or worse i.e. misleading) - so the general point re ability to (objectively) measure is relevant re this project - "identity construction"...

Hi, there's an excellent thread on this forum re measuring outcomes from interventions* - basically this community is strongly biased/focused towards objective outcomes - actimetry [Fitbit type devices] hours worked/attendance at school, college etc. One of the problems with your study is that...

This talk came to mind when I read Jonathan's comment (above) - NIH Metabolomics webinar -Shuzhao Li Jackson Laboratory (slide 50.08 minutes from the start) - "What we Know --"Dysregulation involves microbiome & xenobiotics"...

Yes i.e. you'd need to see the methodology. Interesting to see the responses (above) to the claimed figure {43% [34-51]} - thanks. EDIT - note - moved from another thread - discussion & comments from Simon McGrath - claimed genetic figure seems too high - DecodeME assumed 10% genetic contribution

Sure I'm reinventing the wheel here - what would you tell a researcher new to ME/CFS (heads up) - the PACE debacle and how the community has been repeatedly scammed - the APPG which held the line that yes some people did benefit from GET & CBT --- Then you'd say "how do you propose to address...

Haven't been following this & I've very little knowledge, but that seems to sum it up - treat them - prevent them dying unnecessarily.

Decided I'd make this comment* i.e. in response to the announcement** * **

Does someone wish to break this shocking discovery (joking) to the ME Association i.e. they could follow this protocol to monitor patients - they could also use patient reported outcomes and compare the results! In fact, if they did that they may actually get some useable data! Haven't read the...

Jarred Younger is another person who may have MRS/MRI data re Glutamate levels, or at least would be able to check these findings.

I've very little knowledge but my understanding is that "Magnetic resonance spectroscopy (MRS)" or "MRI" is considered a reliable technique - just wondering why e.g. Jonas Bergquist wouldn't have picked this up in his CSF studies?

RELEVANT? I recall that Maureen Hanson highlighted that Andrew Grimson found platelets to be dysregulated** in ME/CFS potentially related to clotting? So maybe there is something in micro clot findings. **NIH Immunology webinar -...

Which reminds me of Jonathan's comments re NICE Guideline "evidence" - mostly self interested professionals' saying -- "gizza job"

Interesting - any thoughts on who might fund this --? E.g. if it's a public body (UK Government funding) then it's deeply frustrating - surely a public body shouldn't fund this crap (again) --- but then our experience---! Are applications for funding publicised i.e. before the decision is made...

I think we need to be a little careful here - I (I've just retired) worked at a very junior level in policy development and well -- I recall a retired colleague describing voluntary organisations (with an inflated sense of importance) as "busybody's" who basically had no more merit than private...

I was slightly concerned that those with ME/CFS might end up, like a friend who suffers with back pain has, with a tap on the head and some words like - "-- nothing structural, you see there's an amplifier in the (brain) system which which measures pain & well, your amplifier is just set a bit...

Yea the gold is the ME Association funding --- shouldn't take too long to produce substandard work --- quid's in!

Not keeping up (as usual) had to Google "PROMs" - from the ME Association announcement of the study - "apply gold-standard techniques and develop patient-reported outcome measures (PROMs) and a clinical assessment toolkit to monitor people with ME/CFS who use NHS specialist services"* Sorry, but...

Wondering if this could e.g. result in a signal in GWAS [common variants - low to modest effects] and/or rare variant genetic study (whole genome sequences - higher impact variants)?