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Obviously serendipity can play a part e.g. I think that was one of the factors which led to Jonathan's breakthrough in (rituximab) autoimmune arthritis - people treated with rituximab (cancer patients) whose arthritis relapsed. I'm hoping GWAS DecodeME, and potentially the application of...

I assumed that it had passed - dah ---it's a Bill therefore it hasn't passed (it becomes an Act when/if it's passed).

Yes, I seem to recall that Ron Davis et al (& Ian Lipkin - separately via NIH grant) looked at this years ago - people with a ME/CFS diagnosis had been exposed to pathogens but to a lesser extent than healthy people (who tend to pick up more infections since they're out and about)- nothing...

Thank you.

EU - Horizon Europe Grant - Medical University Vienna - Thomas Vogl - "Unraveling the dark matter of infectious diseases, environmental and genetic factors tipping the balance towards NCDs"* I'd be interested to have @Jonathan Edwards take on this. Also, Ron Davis has looked at HLA genes -...

These (to my limited knowledge/understanding!) were objective genetic studies* i.e. not subjective psychological studies. However, it was clear that these diseases were highly genetic (based on the prevalence in identical versus non-identical twins) i.e. ideal candidates for genetic studies. We...

Great to see this. Apologies for my standard reply - wouldn't this turn up in a: GWAS [DecodeME - common genetic variants]; &/or whole genome sequence studies/rare variant genetic studies (e.g. families with more than 1 member affected & at least 1 severe); i.e. if it were a common cause of...

This discussion reminds me of this program on BBC Radio "Janet Treasure on eating disorders and the quest for answers" [I posted a thread here*]. Basically I was reassured having listened to the program - there is a remarkably high prevalence in identical twins i.e. indicating a strong genetic...

Blog here - so available to everyone (including those outside UK) @Peter Trewhitt - https://slam.nhs.uk/blog/the-life-scientific-professor-janet-treasure-3803

Interesting insight -thanks.

I wonder if the healthcare staff thought that challenging Maeve would work i.e. "tube feeding while raised (40 degrees from horizontal?)" or "well, your choice not to be treated"?

Jonathan - thank you for producing this https://www.qeios.com/read/T9SXEU I agree with the way you have dealt with the issue of psychological theories (and indeed physical illness theories) - you've acknowledged the beliefs and then highlighted that they don't have any evidence base and indeed...

Slightly shocked when I even read the full form of words i.e. of these abbreviations. Still, as you have stated, these are relatively commonly used in other diseases/circumstances. Yes, you'd rather unpleasant treatment, for your 27 year old daughter [who wished to live and wasn't e.g...

I think specialist training in ME/CFS is a contradiction in terms? ME/CFS is a diagnosis by exclusion i.e. you look at all of the known/understood/treatable conditions, which could produce this outcome, and when you've eliminated them then you're left with a diagnosis of ME/CFS i.e. left to...

Thank you for this - I think it's important i.e. since it moves things on from unacceptable outcome towards a more acceptable/better outcome -- it shows an improvement (on the status quo) is possible +++.

I recall the image of a Pilipino nurse offering a surgeon a tracheostomy tube as a patient was dying on the operating table - had the surgeon carried out the tracheotomy then the patient would have survived*. OK this Doctor is giving evidence to an inquest but it seems the shutters are down...

Thank you & interesting - so there is a dataset i.e. derived from other illnesses. As you say - data seems to support better outcomes (tube feeding via tube without elevation) versus certain death from starvation - that seems to be a basis to develop a [NICE] policy supporting tube feeding in...

Apologies for my lack of knowledge but is this one of those crazy catch 22 situations - tube feeding wasn't give because you need to be relatively upright (correct?); and Total parenteral nutrition (TPN) wasn't given because the RCP guidelines say it's not appropriate since you- (a) have a...

Re concerns statements (above) that nothing will happen as a result of the inquest. I recall attending a sort of prep talk given by a high profile planning barrister. Planning had transferred from central Government (back) to local government - UK devolved administration. The barrister noted...

Seems like a very good idea - at the very least I'd be interested to know who supported funding this one!