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https://redcap.deakin.edu.au/surveys/?s=EY3DTJYKMR @Michiel Tack

I seem to recall that one of Maureen Hanson's metabolic papers (the last one her team published?) was reviewed by @Simon M and Simon pointed out that Hanson's group were basically saying that: they didn't find much (in that metabolic study); and if we were doing another, metabolic, study then...

Received this reply from Rory: "Dear Francis and Evelien, Happy to help with this if I can - have you approached any UK MPs at this stage? I can certainly seek some engagement with the Shadow Health team (Labour) - do you have a fuller briefing note or paper on the issues you raise that I...

I don't follow much of this discussion - probably already clear. I recall the local water company being prosecuted for the first time. They went to court said nothing of substance and were found guilty of polluting the waterway. They walked out of court and immediately briefed the media...

@bobbler reference to "pyramidy" resonates - the lightning process is a scam. It actually has advantages over other scams - they haven't been hauled off to jail and it's extremely lucrative ---- if they'd gone for another scam, pyramid scheme, drug dealing ---- then there'd be more risk of...

If thyroid problems are related to ME/CFS then I'd expect to see this turning up in the GWAS (Chris Ponting's) study. Don't know if you'd expect T3 (thyroid function) to be low due to sedentary lifestyle?

Interesting - thanks. @CRG was looking at the data re NIHR funding @ringding

Yea I get the impression that there was a bit of --- but we have a real illness.

This phrase covers a multitude ---- "We will remain a space for lively debate for practising clinicians."

Seems like one of those things where it depends on the question you ask: For the (poor, vulnerable) person, desperate to recover their former life, who pays for this, zero benefit; For the person running the class X (Norwegian) kroner; For the person at the next level in the scam --- millions...

Yes, we could e.g. ask a Parliamentary Question: NICE's review of NIHR funded research, into ME/CFS, found the studies to be low/very low quality. Typically these studies were unblinded and used subjective outcome criteria. Will the Office for Strategic Coordination of Health Research (OSCHR)...

Is a "GP Specialty Doctor in Oncology" not an oxymoron? Yes, she might make the trust's financial figures look good (cancer drugs can be very expensive) but, based on her statements above, not some you'd instinctively trust!

Excuse my ignorance but who is this (in the non-Twitter world)? Lou Today @louise_today

Agreed. We could also ask for a rerun of the MRC Committee appointed to identify potential research areas*, which led to the GWAS (Chris Ponting) study. @ringding @CRG *https://www.s4me.info/threads/if-and-how-to-research-pacing-discussion-thread.22860/

Just sent this email* to the former Labour MEP - Rory Pamer - see if Rory can come up with a helpful MP - really @CRG ideas @ringding "Rory, I am part of the EMEC [European ME Coalition] group, you spoke very eloquently in support of Evelien's (cc) petition, on funding for ME/CFS research in...

My immediate reaction, having glanced through some of the comments above, is that presumably there would be clues in the GWAS (Chris Ponting) - thank you to those who proposed the GWAS study via their participation on the MRC expert review panel.

Looks good - I like this bit "The Secretary of State agreed to work with Alex to ensure appropriate research projects are properly supported” Might just be that the concerns about the funding of "low and very low quality research", is finally getting through ---- let's hope so and well done to...

I've sent you a private message with Rory Palmer's email. As per the message Rory should be able to come up with a contact. Yes MEAction may have some contacts - that would be helpful.

I've another possible route; Rory Palmer [Bosworth - Leicestershire], former Labour MEP was quite helpful. I'll see if I can find contact details and ask him if one of the Labour MP from that neck of the woods could help.

Thanks ringsding, just wondering if @CRG would prefer an MP in a different geographic area - the South West of England (Bristol Uni) is benefiting disproportionately i.e. Esther Crawley (Bristol Uni) is getting 50% of the UK research funding.