I'm a big fan of the idea of patients reaching out via their social networks but I think this is an optimistic calculation. Outside of this forum,...
Thinking a bit more about the celebrities. If we can get one onside, I wonder if they can communicate how unique and desperately needed this...
Can instructions be added to the site in the meantime?
@Andy - thanks very much for all the hard work that you've been putting into this. If we want patients (and others?) to register on the site,...
Lots of great ideas from everyone! :thumbup: Should we be so quick to dismiss celebrities? Some celebrities have said some things about ME that...
I wonder if the PR were thinking in terms of who would have impact on the public, as opposed to who would have impact on potential recruits to the...
I don't think a lot of people know what a genome is. Also, if you pronounce GenoME as 'genome' it loses the ME connection, and if you pronounce it...
Hi Kitty - I think you're right that we definitely do want engaged patients to reach out to others that they know. But my suggestion goes wider:...
For the GWAS, which will need 20,000 patients, I think we will have to ask each patient, carer and supporter to ask everyone in their social...
Well done, @JohnTheJack. Appalling that you should have had to go through such a battle.
From the other thread: So how about: Decode ME/CFS The WIGWAM Study: Worldwide Investigation of Genome-Wide Association in ME/CFS
I've set up a thread for suggesting names: https://www.s4me.info/threads/suggest-a-name-for-chris-pontings-me-gwas-project.10352/
What it says on the tin! Please suggest your names here about this project. :)
I like it! Should we start a thread for name suggestions for the project (so that this thread can focus on the science)?
I think this is a hugely exciting project. If we'd had this done twenty years ago, who knows where we'd be now? This basic science is exactly what...
I was wishing I'd asked where they get their FM for the FMT in the clinical trials! From healthy relatives? From other people, who've been...
Some time ago, I think I read that the Quadram research was designed to produce a blood test to measure whether 'leaky gut' was a genuine thing,...
Thanks! I was wondering if it was a Systrom thing, but seem to think it was something else.
Is this the only paper indicating that OI in ME isn't due to deconditioning that has come out within the past year? I seem to remember something...
Good idea to get MPs involved, @dave30th.
Separate names with a comma.