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I've emailed my MP (Claire) to suggest including Long Covid: "Claire, further thought. Some of those involved in the flawed ME/CFS "research" have patented "treatments" based on these flawed studies - benefitting twice from their low quality research. They've now started targeting Long Covid...

Hi @Hutan interesting spot re elevated PXDN, and MXRA7, blood plasma levels. Worth contacting Hejbøl, cc Germain & Hanson, to see if they've considered using plasma levels of PXDN and MXRA7 as a biomarker for these basal lamina/extracellular matrix problems? Might make this a whole lot more...

Just wondering if I should have added "Long Covid" i.e. "will he now write to NIHR, and MRC, to highlight the need to ensure that all funded ME/CFS [, and Long Covid,] research must be high quality -". Thoughts?

Lets hope the question gets asked, and, more importantly, that Sajid Javid does write to the funding bodies to highlight our concerns - might help to etch it into their memories! Can't find a link but Jonathan summed it along the lines ---- now children ---- all together --- unblinded studies...

Finally got around to emailing my MP asking her to submit a [UK Westminster] Parliamentary Question - here's the email*. Hopefully my MP will assist, if not then I'll see if there's another MP who will. * "Hi Claire [Hanna], thank you for asking a Written Parliamentary Question (last June) on...

Thank you for the correction. So there's a possibility that this is relevant to ME/CFS - population overlap (Nath has stated that in many cases Long Covid looks like ME/CFS & most people have now been infected with Covid); interesting spot re these proteins, I'd pretty much given up on these...

EDIT - see Hutan's post below this text is inaccurate --- I hadn't read Hutan's post when I wrote it! Seems to be separation of test and control groups (plots below). However, as you point out, need to consider if the controls have similar activity levels etc. Still interesting though.

Yip I personally think they should be treated as looper pursuing their own agenda - but then I'm biased!

DEEP translation seems to be the most accurate - so I've been told!

I'm laughing - thanks --- OK that may not be appropriate.

You're entitled to hold unfounded beliefs - we all do it. However, it is e.g.: when they are funded (using public money) to carry out flawed research aimed at propagating those beliefs; when these unevidenced views form part of public policy e.g. old NICE guideline; or when these unevidenced...

Thanks. My memory was that they dropped actimetry half way through the study (proffering a range of apparently conflicting "explanations"); to me the study was pretty much a waste, of £5 million of taxpayers money, at that point. I would have liked to see the study carried out as designed i.e...

Neatly gets around quoting that the overwhelming majority of the estimated 250K people with ME/CFS in the UK [2 million in Europe], and their families, believe I'm talking complete and utter crap and don't understand the basics of scientific methodology ---- presented like that it might just get...

Excellent presentation by Chris & Shona Kerr - OK I'm a bit disappointed by the timescale 2.5 years before final data will be out - maybe the preliminary data (2023 - year ish?) will turn up some leads. https://www.decodeme.org.uk/webinar-recording-and-transcript-the-science-behind-decodeme/

OMF published (check out their annual symposium presentations) data on metal toxicity which didn't appear to show any link. There's some interesting stuff here* by Jonathan "They haven't actually found a route in GWI, although the link to genes involved in cholinergic effects is interesting."...

[EDIT - hadn't read Jonathan's post when I wrote this!] The cell is in a dilute saline solution [but more salty than the cell] so the cells is basically less "concentrated" than the surrounding salty solution - so the cell has to pump salt out -- stressor/work. I think the cell is intact so...

I've only read a couple of posts above but GWAS comes to mind - GWAS may provide a clue to the underlying cause(s). Anyone heard when Chris Ponting's GWAS study is due to start - enrolling, sampling ---- whatever?

Actually came to mind that there are comments on this thread* (from Jonathan) that e.g. if TPPP gene is relevant then you may not be able to develop a biomarker based on that (primary/disease causing) change. Genetic (GWAS) studies in Alzheimer's have demonstrated that it is an inflammatory...

Long winded as usual! I seem to recall that Crawley recently made a statement* [post Savid Javid!] along the lines that the Government funding wasn't enough to include objective outcome criteria --- erto the previous research was crap - but it wasn't us, it was the lack of Government funding...

I've been wondering if e.g. Chris Ponting could use some more funding and with Sajid in post --- might be a good time to ask! Anyone in touch with Chris? I'm no expert but DecodeME is about identifying the genetic basis - genes that increase risk and/or protect. I'm hoping that DecodeME will...