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Yea (as someone who didn't follow this i.e. NICE guideline development closely) wasn't the complaint that the NICE guideline panel was weighted towards patients - yet those selling a product (exercise & CBT) were on the panel --- seems like asking for a standard but not wanting it to apply to you.

A few court cases might get the system on track - if you treat someone then, if harm occurs/is alleged, you need to be able to explain why you treated the patient and that there was some (defensible) logic to the treatment. E.g. the inability to explain the basis for a treatment involving...

Again I know nothing but if your daily activity wasn't typical [activity of people with ME/CFS is much lower (EDIT & presumably for people with long covid?)] then perhaps that would explain the (EDIT - difference)?

Chris Ponting's genetic (Google "GWAS") study might provide evidence of the underlying cause(s) of ME/CFS; e.g. this* very small study indicate the TPPP gene might be implicated. If the underlying cause can be identified then that should help in the identification of biomarker(s). I have very...

Can someone post on social media re the claim about "fraud" - Hansard is the official record but I'm not sure if you can e.g. check for "PACE" & "fraud" - used together. Or simply ask her when this occurred? Might be interesting if it turned out they were self identifying!

Surely this being economical with the truth i.e. MRC and NIHR are wholly funded by Government Departments - public/taxpayers money. I'm wondering if I could draw on this for a parliamentary question; here's a few initial thoughts: "I welcome the Secretary of State for Health's recent...

If anyone wants the Sean O'Neill article then PM me [someone provided me with a link].

When you have a Minister who cares about something (it's personal) it would be an extremely unwise official who tried to derail that ---- want a transfer/early retirement/or reshuffled to somewhere unattractive --- well derail something a Minister (personally) wants done and these (normally...

Just checked Hansard (official record of Parliament - in this case the Commons - 12th May) and it's there - search the "Whole Day" PDF for (EDIT) "Sajid"! Haven't figured out how to get Sean O'Neill's article about his daughter - in case anyone has a suggestion (I scan subscribe & unsubscribe...

There was a picture recently (on social media/Facebook?) of Javid and the Chris Ponting et al (funding for DecodeME/GWAS stands out as an extremely rare +ve decision). I've a feeling the Crawley's +++ might not be on Javid's invite list ---- about time.

I have thought that ME/CFS might (at last) be getting some helpful/informed attention - thanks in no small part to Savid Javid --- I've been thinking of asking my MP to ask a Parliamentary Question - I seem to recall something about a quality in Science Research Government body (or some such)...

Having read the above description of C57BL/6 mice ----drinks alcoholic beverages voluntarily --- sounds like it might be a better model for humans!

I personally feel that people like Professor Riley should be contacted/given the opportunity to correct the record.

Have to say I found some of this quite entertaining - hopefully others will see through this nonsense.

People with ME/CFS, and interested academics, asked for the PACE data which showed that there was no objective (actimetry) data - even though they were funded by tax payers [£5 million] to collect same ---- charlatans. They claim to be the victims ----

Good point. I asked a neighbour, who worked for the BBC at one point, about the Newsnight program (Paul Garner et al - still disappointed by that) and he told me to write in and complain ---- might be an idea here. After all, the person who called in can hardly point to any evidence that they've...

See Jonathan's reply - I should have known that --- but I think it may illustrate that a GWAS study might provide leads in ME/CFS. The current position is pretty dystopian; OK it may turn out to be something with no off the shelf (repurposed) remedy. However, it may start a path to a remedy and...

Where to start - maybe assume that I'm extremely reluctant to change my preconceived ideas and I should acknowledge that maybe others do! I've seen a presentation where the GWAS results didn't show much of a pattern initially; however, more data produced a clearer picture --- and that was...

Diseases like Alzheimer's have had large GWAS studies and that helped to understand the basic (underlying) cause - inflammation--- one gene identified coded for 3 forms or a protein - 1 form provided protection (protein with 1 X tyrosine-tyrosine bond) 1 form was neutral (2 X tyrosine-tyrosine...

This discussion has been moved from: Unexplained post-acute infection syndromes, 2021, Iwasaki et al If there is a common cause then presumably this would be identified by a large genetic study (GWAS - Chris Ponting). *( the cause and development of a disease or abnormal condition.) Testing...