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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Crosslinking this announcement from the ME Association thread:

hotblack said:
The ME Association awards Decode ME the Howes Goudsmit Award 2025
The ME Association are pleased to announce that we have awarded DecodeME the Howes-Goudsmit Award 2025 for their extensive work and commitment to their genome-wide association study.

The Decode ME team is led by Professor Chris Ponting (Chair of Medical Bioinformatics, University of Edinburgh & Decode ME Chief Investigator), Sonya Chowdhury (CEO of Action for ME) and Andy Devereux-Cooke (Patient Representative and Co-Investigator at DecodeME) and they represent a much wider team of individuals involved in the DecodeME project.

The DecodeME team have informed the MEA that they intend to use the £5,000 prize money on ME/CFS research that builds on DecodeME with the current first priority being a whole genome sequencing project, Sequence ME and Long Covid.
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meassociation.org.uk

The ME Association awards Decode ME the Howes Goudsmit Award 2025 - The ME Association

The ME Association are pleased to announce that we have […]
meassociation.org.uk meassociation.org.uk
 
Merged thread

Luke O’Neill highlights DecodeME in radio show
www.newstalk.com

Luke O’Neill: The Science of chronic fatigue syndrome

This week on Show Me the Science, Professor Luke O’Neill discussed chronic fatigue syndrome and it's potential causes.
www.newstalk.com www.newstalk.com

Luke O’Neill is quite a prominent immunologist in Ireland and has ties to the biotech industry. He focuses on RABGAB1L & BTN2AZ in discussion.

He says questionable things in this show like “if you tested for these genes in the GPs office you could then diagnose chronic fatigue syndrome” which seems wrong at this point.

But it’s good to see interest from him because he is involved in drug development. And having him recognize ME/CFS on the radio in Ireland is useful.
 
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@Jonathan Edwards I don’t know if you ever reach out to scientists like this to try and bring them further onboard or give them a more robust understanding of where the science is. Prof O’Neill seems to have an interest but not fully understand what ME/CFS is as far as understanding PEM, or the seriousness of Severe ME, as he doesn’t mention it. Would be great to educate him further on where the science is, and see if he could be an ally. He has started companies and managed to progress new drugs (some of his work is related to itaconate), so I think he would be really helpful. My sister has emailed him before but didn’t get far, maybe a medical professional like you would.
 
Braganca said:
Prof O’Neill seems to have an interest but not fully understand what ME/CFS is
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I have heard O'Neill present in the past. He was a popular character on the fashionable immunology scene. If he gets the use of the genetics that badly wrong he probably isn't a useful person to recruit. We have had enough misinformation over the years. We need people interested in ME/CFS rather than interested in being on radio.
 
I got an email from a company called “re-origin” (no idea how they got my email). That basically uses decodeME to promote their brain retraining.

New Research Validates What We've Always Known About CFS
Breakthrough study confirms ME/CFS has real biological roots

Last month, researchers from The University of Edinburgh released findings from the largest genetic study of ME/CFS ever done, looking at DNA from over 15,000 people with chronic fatigue syndrome. The study shows clear genetic proof that ME/CFS is a real medical condition with actual biological markers.

The Key Finding
The study found eight genetic areas linked to ME/CFS. Several of these areas are near genes that control our bodies' response to infections. This backs up what many patients and doctors have noticed: ME/CFS often starts after viral infections and involves the immune system and nervous system.

Why This Matters for Recovery
If you've ever been told "it's all in your head", this research proves ME/CFS is real and physiological, not just psychological.

At re-origin, we've helped countless people overcome ME/CFS symptoms by retraining their nervous system patterns that keep the body stuck in fight-or-flight mode. This research backs up what we already know works. ME/CFS has real biological roots that respond when you retrain your nervous system.

The future of ME/CFS understanding is here, and so is your potential for recovery.
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Not suprising. Given the immunity to evidence of the brain retraining charlatans and that all private companies care about is earning money. But a bit disappointed to see Decode weaponised like this.
 
Yann04 said:
I got an email from a company called “re-origin” (no idea how they got my email). That basically uses decodeME to promote their brain retraining.



Not suprising. Given the immunity to evidence of the brain retraining charlatans and that all private companies care about is earning money. But a bit disappointed to see Decode weaponised like this.
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It's just inevitable, I'm afraid - they'd be saying the same thing whatever Decode had come up with (and continues to come up with in future).
 
Yann04 said:
I got an email from a company called “re-origin” (no idea how they got my email). That basically uses decodeME to promote their brain retraining.



Not suprising. Given the immunity to evidence of the brain retraining charlatans and that all private companies care about is earning money. But a bit disappointed to see Decode weaponised like this.
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:jawdrop: the audacity

... or is it utter delusion from them given whatever they've a tendency towards/told themselves to start doing it calling it 'help' for others in the first place

I looked up with a certain search term what this was and the spiel seems to have been written ready for the pre-bunking with things like 'whilst some might be skeptical of brain retraining... Re-origins focus' and 'whilst some brain retraining tools lack strong scientific evidence... re-origin' type things. Lots of non-sequitur potentially there?

And it seems like there is a lot of non-sequitur in how they've tried to claim what they offer somehow relates to DecodeME.

The fun bit is how if the Advertising Standards got involved they are going to prove their claim

At re-origin, we've helped countless people overcome ME/CFS symptoms by retraining their nervous system patterns that keep the body stuck in fight-or-flight mode. This research backs up what we already know works. ME/CFS has real biological roots that respond when you retrain your nervous system.
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particularly given they are obviously trying to infer these 'biological roots' both respond in a medically helpful way and not a harmful one and their inference is clearly trying to use sophism to infer that DecodeME has somehow proven that their 'therapy' is backed up by it (this research backs up what we already know works) when it says nothing of the kind.

It puts in a whole different light the question of whether it is appropriate vs necessary for researchers to have to say things like 'confirms it is not in the mind' or more specific things when the risk is leaving it open to parasitic usage if the opposite isn't underlined etc.
 
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