DecodeME - UK ME/CFS DNA study underway

Congratulations!! Very good to hear

Just wondering: is this project financed by the UK government or was it financed by private funds?

 

You can only add threads to the calendar. Create the thread, then go back into it and use the Thread Tools drop down menu and use Calendar Add option.

 

By government - the MRC and NIHR are government-funded.

 

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?”

 

https://twitter.com/user/status/1275434949433102337

 

That article was great. Superb interview with Muirhead. Much better report than the Guardian, who as usual can't resist a knife to our back. That picture is so insulting.

When I read the Guardian piece, right next to it was the BPS grievances report about the "perils" of online activism, how ironic. The "perils" are a large genetic study, impressive for an "anti-science" community. This study is the result of years of relentless activism. Though it's true that this is the most perilous of outcomes for our BPS overlords. Seeing other ME coverage below the article shows how much of a mess of things the Guardian has made.

Congrats to everyone who made it happen! This is really big news.

I had not thought of the public reaction and I think it would be really important to record the inevitable rantings on the "Bad ME quotes" thread. There will be a lot of angry people spewing vitriol at us, including the people who have been screaming "ACADEMIC FREEDOM" for years but somehow don't share the same sentiment when it comes to real research.

 

Wow, impressive numbers!

The UK is really the best place for this to happen. Bastion of woo, where 2 decades of clinical practice have failed miserably. But probably the country with the most organized patient community, able to spread the word to thousands in part thanks to all the bad influence from the BPS folks.

And the timing could not be more perfect. Not only will COVID-19 bring many new patients in, it will also help massively with recruitment and visibility.

 

Can someone post Tom Whipple's piece? I have maxed out my 2 free articles. Thanks.

 

Scroll to the bottom of Andy's post to see it full-size.

(Link edited - thanks, @lunarainbows!)

 

I think you meant this post :

https://www.s4me.info/threads/decodeme-uk-me-cfs-dna-study-underway.15604/#post-268718

(you’ve linked to twitter accidentally)

 

Oops! Thanks - I've edited that link.

 

There are so many people who made today's announcement the success that it has been, esp @Andy @Simon M Sonya, the charities, the funders and our comms/marketing partners. There will be many obstacles to overcome on this 4 year journey. But the best bit about today - for me - was that I now know that we won't be travelling alone. So thanks to everyone who commented and supported today. It means a lot.

 

I hope this study will demonstrate that the right answer to "medically unexplained symptoms" is research to find the biological basis for them.

 

Thank you, Chris! This has been a brilliant day for all of us. I've waited more than 30 years for serious, large-scale science like this. I can't thank you and your team enough for everything you've done and are going to do.

 

“Feel the love – and the heat”

 

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 .

 

No pressure, no pressure....

 

Absolutely ... no pressure .

Very sincerely, huge congratulations to all involved in making this happen.

My wife signed up, and as there is an option to register an interest if you don't have ME/CFS I signed up too - seemed like the right thing to do.

 

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.

 

That’s even more impressive!! The tide is really turning

Also, the amazing amount of people signing up to contribute to research in such a short time, should hopefully interest journalists to turn this ridiculous narative around of patients being “against” research. Quite the contrary it seems!!