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Good to hear the harms being highlighted - I'd commented here* that it is a lucrative scam (for those at the top) - this illustrates the harm through the creation of false hope/beliefs and inevitable disappointment when the "treatment" doesn't work and worse still, they're blamed ----...

"Jesus, my back is itching, isn't yours?" Still making me laugh - thanks.

Check out the comments here* if TPPP1 is implicated then there may not be a clear biomarker in blood or even cerebro spinal fluid (not that accessible). I think Angela Vincent mentioned to me once that there'd need to be a technological discovery to understand ME/CFS - check out comments in this...

Reminds me of a comment from Brian Hughes, during his talk to the Norwegian ME Association* - (from memory) if ME/CFS is psychological then you would expect psychological treatments to work - but the evidence is weak, typically from unblinded studies with subjective outcome criteria ---. So...

Just thought I should highlight that although the hunt for infections (e.g. the potential link to EBV) could be investigated by e.g. looking at the US Army data - I'm not aware of any proposal to do that. So although there are potential research areas, lack of funding etc. mean that these may...

If you hunt around this forum then you'll find some discussion re EBV in MS [large US Army study] - how that could be replicated for ME/CFS.

I'm no expert but--- I think that's why GWAS (Chris Ponting's study) and indeed the recently published, much smaller, Norwegian study* are important i.e. they're looking for cause, rather than downstream events (consequence). I recall this comment* since it indicates that the way in (to...

Awesome presentation, just listened to it - calm, coherent, informed --- thanks to the Norwegian ME Association & Brian Hughes

Too early to say but there are some interesting comments here* re a potential cause of ME/CFS uncovered by a genetic study (GWAS) --- something like this, an intracellular problem, wouldn't necessarily give an easy to detect signal in blood or whatever. To be honest I think something like this...

We're laughing here i.e. "bejeebus" - do you have Irish roots?

"UK: NIHR funding opportunity: 22/37 Non-pharmacological interventions for fatigue management in adults with long-term health conditions" I laughed when I read the title. Perhaps someone like @Brian Hughes Could consider whether anything meaningful (like funding for an MSc project) could come...

Surely the assumption is that anyone who definitely had Lyme, and who has disabling fatigue (post Lyme but not before), is suffering from post Lyme fatigue not ME/CFS? Is this publication suggesting that you are more likely to get ME/CFS after Lyme? Tangential - as often! Wonder if they ever...

Interesting - I wonder if the research into Alzheimer's may help - understanding how to investigate abnormalities in brain cells - potential ways to treat. Sounds optimistic - understatement, but they may have come up with techniques/technologies which could help to understand e.g. TPPP1...

If you mean a large scale GWAS project, in ME/CFS, then yes, these have been carried out in a number of other, higher profile, illnesses - which does beg the question why they weren't funded earlier ---- thankfully, the expert MRC group Jonathan sat on, identified the opportunity and Chris...

Hopefully you'll get a better answer than this. Not sure if you noticed this comment from Jonathan (previous page): "I think its effects may only be found within cells. So yes, this would explain exactly why the mechanism of me is so hard to observe. Tubulin is a polymerising protein that...

Thank you very much.

As per comments above, we don't know if this finding will be replicated in a larger GWAS study - DecodeME or whatever. However, on the face of it, this could potentially explain why no biomarker has been identified in ME/CFS i.e.: presumably the effect of this gene (TPPP) is to expressing a...

Interesting i.e. "I don't suppose, when the team from Harvard TH Chan School of Public Health did their big longitudinal study (10m blood samples from US military personnel over 20 years), they looked at incidence of ME/CFS as well?" If you search on this thread then I think you'll find a...

@CRG & @Shadrach Loom only scanned this but possibly a Parliamentary Question which welcomes this initiative and ask whether it will end NIHR funding for low/very low quality research into ME/CFS i.e. unblinded studies using subjective outcome criteria (questionnaires) which provide no useful...

I'd be inclined to act now. Sajid Javid Secretary of State for Health and Social Care* has been making the right noises** "We need to do more on ME/Chronic Fatigue Syndrome. There’s been a real lack of research over many years". Sajid also met with Professor Chris Ponting [Genetic Study "GWAS"...