JellyBabyKid
Senior Member (Voting Rights)
This took me to a tweet...
Sorry - I edited the link and it should be OK now.This took me to a tweet...
Sure. As I explained up-thread, the original sign-up and the sign-up that is available on the website (www.decodeme.org.uk for those who missed it..) now was to get onto the mailing list for updates and notification when recruitment is open. Once recruitment is open (March 2021), anybody who is willing to take part will need to sign-up to the study, even if you have signed up to our mailing list previously.I've changed my email address since the first sign-up - hope that's OK? I don't currently have access to the original one.
There are reasons for all things...I notice the SMC have nothing to say about it yet, despite their pride in getting big scientific news to journalists hot off the press. I guess there must be a reason ... I wonder what it could be.
Good! Much better.Meanwhile, someone at the Guardian appears to have listened to the criticism and changed the photo at the top of its article:https://www.theguardian.com/society...ch-genetic-study-chronic-fatigue-syndrome-cfs
The times they are a changin’.
Before:View attachment 11282
Now: View attachment 11283
Billions have been spent on Alzheimer's research with nothing to show for it. No one ever uses that as a reason to say we should end it all.So I was just speaking to my partner who; is lovely but also goes through life with a much more cynical / “pessimistic” attitude than me, (opposites in ways!), in the sense that by doing that, he doesn’t get disappointed all the time and feel sad - as he says, expect nothing and then you won’t be sad. Which I totally understand especially if life is difficult.
Well, in his usual manner, he said “better not to be too excited just yet because what if it doesn’t show something, and then you might get too sad” And I got a bit deflated. Was wondering if anyone here could perhaps provide insight (ie reassure me... lol), that the study most likely show something... do we have preliminary results that show there likely is some sort of genetic signal in ME, already?
I'm not happy with that figure, I think it's based on the flawed 1994 CDC criteria.ME/CFS affects an estimated 250,000 people in the UK
My bolding, I am very happy to see ME be described properly for once.Post-exertional malaise, an adverse reaction to levels of exertion that many might consider trivial, is often considered to be the defining symptom
Ditto!Thank you, Sonya.![]()
![]()
Billions have been spent on Alzheimer's research with nothing to show for it. No one ever uses that as a reason to say we should end it all.
Only people arguing in bad faith use that as a weapon. Research is hard and you never know what you will find or how. It takes people of very bad faith to gloat about failed research and argue it means it should all be stopped. Those people can be ignored, they mark themselves as irrelevant.
Do you have to get past the paywall to see this?I was disappointed with Tom Whipple’s analysis in The Times
This is a good point. What is the best way to get this right in front of the eyeballs of the majority of medical professionals?I still feel a little shellshocked at the news. And so happy.
Every time a doctor starts to say something weird to me, like they did recently, I’m going to say, “oh did you know the MRC has just funded a huge genome study into the genetic causes of ME?”![]()
Was wondering if anyone here could perhaps provide insight (ie reassure me... lol), that the study most likely show something... do we have preliminary results that show there likely is some sort of genetic signal in ME, already?
From the FAQs page:Does anyone know what ME criteria they are using for this study?