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I don't know. I've heard it's quite arduous, but this suggests it's easy (and doesn't require a lawyer): https://knowhownonprofit.org/how-to/how-to-get-started-guide

Does anyone know any UK lawyers to tag? @Valerie Eliot Smith? Anyone else? Very pleased they're not waiting to get the UK position fully funded before recruiting.

Pleased to see this. We need academics and clinicians speaking out in their journals.

Is there time for Australians to do some rapid advocacy work there?

That was the quote that particularly struck me too, @Tom Kindlon! :)

The ones that cause sleeping sickness are found only in Africa, apparently. But obviously not all PWME have been to Africa! If trypanosomes are the answer for all of us, they must be a different kind, presumably.

Good to see scientists piling on to help patients in the Netherlands - excellent international effort.

Oh! I thought everyone would have them if I did. I guess not! Another thing he mentions is that trypanosomes cause sleeping sickness and that the treatment for that is suramin, which of course Robert Naviaux used in his autism trial and is interested in for ME. Ron said he doesn't know what...

o_O Thanks, fixed it! :whistle:

Although he says that trypanosomes may cause ME with 'high efficiency' so maybe that would be why, if the other infections are less efficient at producing it (and from the Dubbo study, the ME rate was about 11% from EBV and the other infections they were following).

I don't know. But Ron is saying that he's trying to develop a probe for RNA in the blood now (but expects it to be difficult because RNA is unstable).

There was a little bit of discussion about this when people were tweeting about it from the conference but I'm watching the conference DVD now and this seems quite striking. I hope the biomedical brains here (such as @Jonathan Edwards!) might weigh in on how to think about it. Davis reported...

I'm just watching Ron Davis's talk at the IiMER conference (just got the DVD). In it, he says that the blood circulatory system is the sewer of the body and no matter where an infection is in the body, cell-free fragments of that infection's DNA will end up in the blood to be got rid of...

Just skimmed it - they seem to be well behind schedule.

Does anyone know of any publications Dr Systrom has on his work on the prevalence of SFN in ME/CFS and/or POTS/OI? In Dr Oaklander's talk (on another thread, also very interesting) she mentions an abstract that he published with her and others about this but I've been unable to turn it up on...

Thanks for posting that, @ScottTriGuy - I just watched it and it was indeed very interesting. Does anyone have a link to the the abstract of the paper that Dr Oaklander mentioned that she'd written with Dr Systrom on SFN/CFS? I gather that there isn't a full paper yet.

Although enteroviruses may be in tissue, wouldn't tissue fragments end up in stool and any enterovirus get picked up in microbiome tests?

Yes! Thanks. :)

Thank you, @dave30th, for keeping the pressure on and sending all these letters. Surely one of them will find someone actually prepared to do his/her job.