ME on Songs of Praise

 Hello

Last night on Songs of Praise there was a lady who has ME, it was an interesting interview.

Click here to watch it.

Miriam

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.  
 

Miriam

Watch the DecodeME results webinar + visit our new website

 

After sharing our initial DNA results two weeks ago, we have been delighted by the community response, as well as the widespread media coverage.    As we approach the end of August, DecodeME's study team will change, and some staff will be leaving, but the project - and the data - will live on.    The new DecodeME website will now be the central place for our updates and to find our contact information. To ensure everything remains accessible long term, we’ve moved it across to the University of Edinburgh. The site contains all the same content, including results and contact details, and will continue to be updated as new findings are shared.

Visit the new DecodeME website

Thank you to the 2,500+ people who joined our genetic results webinar last week! We hugely appreciate your engagement. For those who couldn’t attend live, you can find the recording and transcript on our new website.   Watch the initial results webinar

As we move into this next phase of DecodeME, our data access will continue to be open for applications, and we encourage researchers to analyse and explore our rich dataset. We are also looking to build on DecodeME through new research projects, which you can support here: Donate via Action for ME.    Thank you for all your kind messages in response to our initial DNA results. Whilst we are unable to respond to them all, we are grateful for your continued support.    Warmest wishes,  The DecodeME Team  Miriam

Groundbreaking DecodeME results revealed

 The long-awaited initial findings of the DecodeME project have been revealed, and as a valued supporter we are delighted to share them with you.

This is the largest ever genetic study of ME, involving over 26,000 participants – people who generously donated DNA samples and completed detailed questionnaires. It’s a study that has put lived experience at its heart, with people with ME shaping its design every step of the way.

Co-led by Action for ME and Professor Chris Ponting and his team at the University of Edinburgh (within the ME Genetics Centre of Excellence), DecodeME is a major milestone. The findings offer new insights into the biological basis of ME, helping to validate the reality of the illness, guide future research and, ultimately, pave the way for better diagnosis and treatments.

The main findings from the analysis are:

• Your genes contribute to your chances of developing ME/CFS
• 
  
• People with an ME/CFS diagnosis have significant differences in their DNA compared to the general population.
• Eight genetic signals have been identified. As DNA doesn't change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS
• The signals discovered are involved in the immune and nervous systems, indicating immunological and neurological causes.
• At least two of the signals relate to the body's response to infection.
• Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS.
• These signals align with how people with ME/CFS describe their illness.
• 
  

Find out more about the results here.

We will be holding a webinar on Thursday 14th August, where we will explain further what has been found and answer your questions. Please click here to register for the webinar.

This moment is only possible because of long-term investment in ME research – and supporters like you who believe in making progress where it’s most needed.

We’ve come a long way, but there is still so much more to do. We remain committed to driving increased research and understanding into ME, and bringing more talented researchers into the field.

With warmest thanks for all that you make possible,

Sonya Chowdhury

Chief Executive, Action for ME

Decode ME results...

 Hello

I have just received the following.

We are writing to let you know that the initial DNA results from the DecodeME study will be available in the next few days. We plan to send you an email with our findings on Wednesday 6th August around 7pm. We will also be announcing the results on our website at this time.
 

We're letting you know the timing in advance so you can pace yourself if needed. 

Thank you for your continued support and we look forward to sharing more very soon. 

 
Warmest wishes,
The DecodeME Team
 

 Miriam

Give today, change tomorrow

 

Dear Miriam Like you, we know that significant change is needed for people with ME, and it is needed now. At Action for ME, we know that change doesn’t just happen – it has to be made. That’s why, this year we are running a Summer Appeal and hoping to raise  £25,000  to fund vital change for people affected by ME. With your help, we can achieve: Changes to our scientific understanding of ME, through more  high-quality  research.  Changes to the  help and support available  to adults, children and their loved ones. Changes in  attitudes towards ME  – including those of politicians, health and social care professionals and educators. Donate or share this campaign between 20th - 30th June to bring much-needed change for people with ME.

Donate Now

Spread the word Tell your family, friends, neighbours or anyone who wants to see change for people with ME. If you are online, share our social media posts using the buttons below and help us spread our message of change even further.

Change for Frances Alongside funding new biomedical research and working to change attitudes, our work also creates positive change for people like Frances, who used our Doctor and Information & Support Services: “ME threatened everything about me that made me, me - my body, my mind, my relationships and my career. Action for ME has been there throughout, supporting me to hold these pieces together and to find myself again, albeit in a very different way of living.”

All money raised will go towards our services and other projects, including research, to improve the lives of people affected by ME. Thank you for your support, Sonya Chowdhury, Chief Executive, Action for ME. P.S. We know that costs are rising for everyone at the moment. We are so grateful for anything you can spare to help us create change for people affected by ME.   You’ve received this email as you are either opted in to receive emails about our work and fundraising, or you’ve made a recent donation to Action for ME and we have no contact preferences recorded for you. If you have any questions about our campaign or would like to opt out of future communications, please let us know by clicking the unsubscribe link below, calling 0117 927 9551 or emailing fundraising@actionforme.org.uk

Don't let it expire..

 Hello

A couple of months ago, my exemption certificate expired, and I had no idea, so now I am in a pickle facing fines, I just wanted to let you know, so you can keep an eye on your exemption certificate if you have one.

Miriam