Discussion in 'BioMedical ME/CFS News' started by NelliePledge, Jun 23, 2020.
This took me to a tweet...
Sorry - I edited the link and it should be OK now.
Have signed up.
Feeling very emotional today. Thank you to all who have worked on this both directly on the project and over the years in preparing the ground so that others could take it forward.
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.
We will obviously promote any update, and the opening of recruitment, widely, so if you are going to regain access to your email address at some point then I'd suggest not doing anything, if you aren't, then I'd suggest signing up with your new email address, but, either way, it will not affect your ability to apply to participate in the study.
Hope that clarifies it.
There are reasons for all things...
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’.
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?
Good! Much better.
The real watershed moment will truly be once those misleading pictures are never used anymore.
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.
Does anyone know what ME criteria they are using for this study?
I'm not happy with that figure, I think it's based on the flawed 1994 CDC criteria.
My bolding, I am very happy to see ME be described properly for once.
Brilliant news. I’ve signed up. Thanks to everyone who made this happen.
Yes... my partner wasn’t saying not to do the research though. He’s very happy it’s funded. He’s just saying he doesn’t want me to get very disappointed/extremely sad incase the study doesn’t find anything, as emotional energy can also affect ME...so I was hoping someone could tell me more about how this genetic study works & likelihood of finding something..
After all, it’s been funded to a large amount, so there probably would be preliminary results from earlier studies / some degree of confidence perhaps about genetic causes of ME already??
That's great, thank you
Do you have to get past the paywall to see this?
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?
It cannot show nothing. Even if there are no gene associations at all that would be a crucial piece of information. It would also be a very important thing to explain, since there is evidence for a genetic component from epidemiological studies. The great thing about a study like this is that it will get the true answer whatever it is. And you get to the ultimate answer in this game by excluding possibilities at least as much as by including them.
The likelihood is that it will pick up some links though and that could take use directly to a relevant pathway.
Thanks @Jonathan Edwards. Very helpful
From the FAQs page:
CureME will apply its diagnostic algorithm (a very specific set of rules) to assess people according to well accepted diagnostic criteria: the Institute of Medicine 2015 or the 2003 Canadian Consensus criteria, but not the Oxford or NICE criteria. Post-exertional malaise (PEM) will be a mandatory symptom. This is because patients, patients’ organisations, and ME/CFS biomedical researchers all regard it as a defining symptom of the disease. Using these definitions will help to ensure that findings are compatible with those from biomedical research around the world, which uses these criteria.
We undertook an online survey and the majority of people supported this. These criteria were also agreed at the MRC/NIHR Workshop with researchers, patients and carers.
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