DecodeME in the media

Andy said:
If people would like to see donation links on the new DecodeME pages then I can only suggest that you get in touch with the University of Edinburgh and push them to reconsider their policy of no third party donation links on webpages they host. We will only give links for both, so if we can't then we won't link to any.

I can understand the desire to donate to Chris' team directly but I would point out that it says on the AfME donation page, "Donations will be managed by Action for ME, and used towards research projects delivered in partnership with the University of Edinburgh, such as the Genetics Centre of Excellence and Sequence ME and Long Covid.".
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I actually prefer it goes through trusted charities, with an emphasis on trusted. They'll know more than me about where to put the money, so that's preferable to me going around the web and clicking on projects. I donated to AfME for this specific project though, but I'm sure it'll be money well spent either way.

I'll try to find some others to donate as well. Got some healthy friends in the UK.
 
Mods please move if better thread .

DecodeME website has migrated to Edinburgh Uni


institute-genetics-cancer.ed.ac.uk

DecodeME : The world's largest ME/CFS study | Institute of Genetics and Cancer

DecodeME aimed to find genetic causes of why people become ill with Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS). The study will help us understand the disease and ultimately find treatments.
institute-genetics-cancer.ed.ac.uk institute-genetics-cancer.ed.ac.uk
 
Email update:

"Thank you, and what's next

As we move into the next phase of the study, we want to say a huge thank you to the incredible ME/CFS community who have made DecodeME possible.

DecodeME is not stopping, it’s transforming. While some of our team will be leaving, the data and its potential remain, and the research continues. 
We will: 

  • Continue analysing the DecodeME dataset and publish updated findings.
  • Encourage other bona fide researchers to use the world’s largest ME/CFS dataset.
  • Welcome the start of the PRIME project in October, which will build infrastructure and connections for research, as well as training people with ME and carers to get involved in directing research.
  • Seek funding for Sequence ME and Long Covid, which will use DecodeME data to analyse the entire genome.
Staying up to date
Going forwards, we will no longer be able to respond to emails or check our social media. We still aim to let you know of any key updates to the study, through our newsletter and on our website.

Your data
If you took part in DecodeME, your data will continue to be held securely by the University of Edinburgh. If you gave consent for wider use or recontact, that still applies and will remain available to bona fide researchers through our Data Access Process.

How to contact us

  • To update your details or consent, email: decodeme@ed.ac.uk Please detail in your message your name, date of birth, and what change you wish to make.
    (this email will be checked periodically – we will be unable to answer other queries).
  • For general information or support, we recommend visiting Action for ME’s support page
Thank you
As we step into this next phase, we want to say how much this study has meant to us. We are proud of what we’ve achieved together, and incredibly grateful to every participant and supporter. DecodeME would not be where it is today without you – thank you. 

Warmest wishes,
The DecodeME Team"
 

BBC Audio | Access All: Disability News and Mental Health | Is the DNA of people with ME different?

And high heels make some disabled people walk better
www.bbc.com www.bbc.com

DecodeME topic starts @22min, Interview with Professor Chris Ponting starts @ 26min.
For years, many people living with ME and chronic fatigue syndrome (CFS) have battled to have their experiences of ill health heard and validated.

Now, two recent studies have shown there could be differences within their blood and DNA compared to the general population. We meet the scientist behind the research – Professor Chris Ponting – and Laura Boyles who has been living with the condition for 15 years.

Blind podcaster, Evie Roberts, has only just finished her GCSEs but is already getting A listers to appear on her show and is keeping Emma Tracey on her toes.

And we meet our second professor of the day – Professor Cathy Bully – who’s part of the team behind a new shoe which is helping people with foot drop, walk again. And in one case get back into the mountains, hiking.

Presented by Emma Tracey with Kirsteen Knight
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