DecodeME - UK ME/CFS DNA study underway

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Kitty said:
'DecodeMe' is used in the subheading. I don't think it's really represented in the article, though.
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Ah thanks, I skipped over that obviously. My guess would be that is an error, as they correctly use capitals later on
British scientists have announced that they are launching the world’s largest research project to unlock the genetic clues to this condition. The DecodeME project will collect DNA samples from 20,000 sufferers, after receiving £3.2m funding from the Medical Research Council and National Institute for Health Research.
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Andy said:
"Chronic fatigue syndrome sufferers hope for breakthrough as they fight for recognition", https://inews.co.uk/news/long-reads/chronic-fatigue-syndrome-cfs-decodeme-genetic-research-456045
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I just shared this to friends on FB with the comment:

"Given anyone - you, your love ones, friends - could fall prey to ME/CFS, then it's better to understand the reality of it now. Especially as you may already know someone with the condition but misunderstand them without realising. There is a whole range of severities, but the one thing in common ... is that it completely screws up the life you used to have."

Edited very slightly for clarity on FB, so here also.
 
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JellyBabyKid said:
Just downloaded this week's New Scientist (thank you to my local library) and it seems really odd that so far I can see no mention of this in the news section. Or on the website. They are normally all over genetic projects.
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that is really weird. But they have this article which is currently #2 on their website:

https://www.newscientist.com/articl...ing-coronavirus-symptoms-can-last-for-months/

“Why strange and debilitating coronavirus symptoms can last for months
From extreme fatigue to weight loss, numbness, breathing difficulties and chest pain, some people’s covid-19 symptoms are proving very hard to shake“

However from what I can see, they’re not linking it to ME or even other types of post viral fatigue, rather it’s written as if it’s only specific to coronavirus.

I can’t access the whole article, if anyone can I’d like to know what it says afterwards. But it would be very odd if they didn’t mention ME at all in the whole article.
 
lunarainbows said:
However from what I can see, they’re not linking it to ME or even other types of post viral fatigue, rather it’s written as if it’s only specific to coronavirus.
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I think that's quite wise for now, at least in relation to ME. Yes, the possibility of patients developing it should be mentioned, but for those people with symptoms not often seen in ME, it's useful to keep it in its own category until we know more.

We might eventually see one or more subgroups emerging amongst the post-Covid group: some whose presentation looks typical of ME, some who have additional symptoms, and perhaps some who look broadly similar but lack a core ME characteristic such as delayed PEM.
 
lunarainbows said:
that is really weird. But they have this article which is currently #2 on their website:

https://www.newscientist.com/articl...ing-coronavirus-symptoms-can-last-for-months/

“Why strange and debilitating coronavirus symptoms can last for months
From extreme fatigue to weight loss, numbness, breathing difficulties and chest pain, some people’s covid-19 symptoms are proving very hard to shake“

However from what I can see, they’re not linking it to ME or even other types of post viral fatigue, rather it’s written as if it’s only specific to coronavirus.

I can’t access the whole article, if anyone can I’d like to know what it says afterwards. But it would be very odd if they didn’t mention ME at all in the whole article.
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It's incredible to see all this coverage. My head is spinning.
It doesn’t even seem to be linked to how severely they had the disease, as far as I can see,” says Danny Altmann, an immunologist at Imperial College London.
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This is so important. One of the initial tropes from Wessely was that this must have only happened from a severe illness, the kind that borderline leaves you wondering if it would kill you. Hence the trauma nonsense. It's all about something that probably floored the patient initially, leaving them in a state of shock about whether it was normal to resume daily activities.

And yet, nope. Not at all. Too many accounts of people with barely any initial symptoms developing the same, and all saying the same about exertion being the main trigger. This trope has been beaten down to a pulp, especially as there was a clear gearing up to label it all as PTSD, with expectations that the heavier cases would be the ICU ones, the traumatized ones.

Nope. Complete fantasy fabricated by people with no insight whatsoever into the illness progress.
 
What a week it's been, with the amazing launch of @DecodeMEstudy, the M.E./CFS DNA study that aims to help us understand the disease and ultimately find treatments.

It's been brilliant being able to share so much positive coverage, and see the overwhelming support from the M.E. community. Registrations from people with M.E. who want to take part have now topped 14,000 since Tuesday!
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Code: 
https://www.facebook.com/actionforme/posts/10158458029628209
 
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