DecodeME - UK ME/CFS DNA study underway

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Very well done all those involved.

It has been easy to think that nothing changes, but it has. Things have changed out of all recognition since the days when I first learnt about the ME world in 2014. An awful lot of people we know have contributed to getting this realised by persevering in the face of what seemed a brick wall.

I would sign up at once - but I don't think they would have me!
 
Andy said:
I've not read the Guardian article yet but I'd just like to stress that we did NOT provide them with that image.
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You've helped make a lot of people happy this morning Andy et al. Thank you. :)

Bit of a numpty question here, but when press releases go out do they include example images to include? Just wondering if the Guardian and others choose a photo of a 'tired person' over supplied photos, or whether they're just choosing something they feel appropriate having not been sent anything.
 
ringding said:
Bit of a numpty question here, but when press releases go out do they include example images to include? Just wondering if the Guardian and others choose a photo of a 'tired person' over supplied photos, or whether they're just choosing something they feel appropriate having not been sent anything.
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I agree that the Guardian does not seem to have made any stupid mistakes this time, but the contrast with the photo in the Times is telling. The Times has real people and you can see they are real people. The Guardian presents a fantasy through a veil of its own preoccupations. The piece is so short it is almost 'OK we have to cover this but let's not lift the lid too high - we might discover some egg on our face'.

I am a bit disappointed in To Whipple's piece in the Times. He really doesn't see the wood for the trees and tries to play all sides equally. On the other hand his piece is relegated to the bottom, as if maybe this is an echo of an old story finally fading off the page.
 
YEEEEESSSSSSS!!!

'Game-changer' has become a cliche but this really is one. We've been waiting decades for serious, fundamental research like this, that has the potential to change everything.

Not only that, but the fact that the MRC and NIHR are funding it to the tune of £3.2m is surely a sign that they realise that the 'deconditioning' idea is dead.

Huge congratulations and thanks to @Andy, @Simon M, @Chris Ponting and the rest of the team for all their hard work and perseverance.
 
Jonathan Edwards said:
I agree that the Guardian does not seem to have made any stupid mistakes this time, but the contrast with the photo in the Times is telling. The Times has real people and you can see they are real people. The Guardian presents a fantasy through a veil of its own preoccupations.
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In the media, photos of real people are used when real people have been interviewed. Otherwise, images from stock libraries are used, and they use models. So the difference is really a function of The Grauniad not interviewing any patients. (Which is not inconsistent of presenting a fantasy through the veil of its own its own preoccupations but I thought this article was pretty good, certainly by the standards of The G's usual coverage of ME.)
 
On the FAQs page of the DecodeME website, it says:

How long will the GWAS study take to complete?
In total, four years but we will release preliminary results as soon as we can, prior to publication. The sooner we can recruit participants, the sooner the results will be released.​

So, @Andy, @Simon M, @Chris Ponting - could we knock four years off this thing by recruiting 20,000 eligible patients by March 2021?

If I knew any PwME in real life, I'd be emailing them now! I think we all should be.
 
ME Association said:
Patients, Scientists, and Advocates Celebrate £3.2m Funding for DecodeME, the Largest Ever ME/CFS DNA study!
June 23, 2020


DecodeME Press Release.

Funding for the world’s largest genetic study into myalgic encephalomyelitis (M.E.), led by a partnership of patients and scientists, has been announced today.

Despite its high cost to patients, the economy, the NHS and society, very little is known about the causes of M.E., also diagnosed as chronic fatigue syndrome (CFS, or ME/CFS), including how to treat it effectively.

Now, thanks to £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, the ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition....
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https://meassociation.org.uk/2020/0...r-decodeme-the-largest-ever-me-cfs-dna-study/
 
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