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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...

When I glanced at this I thought - did microtubule (dysregulation) come up in the small Norwegian ME/CFS genetic (GWAS) study and I think it did --- check out Strategist's post here* Of course the Norwegian study was about ME/CFS and this is SARS Covid 2 ---- so I've no idea where I'm going...

This* was pointed out to me earlier - I couldn't access the Times article [subscription required]. Given Sajid's personal interest it seems a good time to raise the community's concerns. E.g. that poor quality research, i.e. unblinded and with subjective outcome criteria, shouldn't be funded. I...

Reminds me of @PeterW posts here https://www.s4me.info/threads/the-25-have-severe-me-statistic.27238/#post-416942 Thanks Peter

I think the reality is that where the (English) NHS leads the NI system is likely to try to follow. Basically if you ask a question then the standard reply is NICE Guidelines - AKA English NHS approach. It's difficult to get beyond that parrot following of the position in England, partly since...

BBC Radio 4 program "Working with Long Covid Money Box Seb Choudhury chats to a panel of experts about working, and not working, with Long Covid." Broadcast yesterday and available online. One contributor set out how she left her NHS job as an occupation therapist (after getting Long Covid) and...