DecodeME the ME/CFS Study - We aim to find genetic causes of why people become ill with myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) with our ground-breaking research.
 
You’re invited to the next DecodeME webinar.
This webinar will be a chance to hear updates about the study's progress and have your questions answered.  It’s on Friday 15th March 02:00pm (GMT) on Zoom and Facebook Live. 
 
There are only 500 spots to watch the webinar on Zoom on the day.  Don't worry though, if you don't manage to get a place this time (this can happen even if you registered in advance), you can also watch on Facebook live via our Facebook page, or watch the recording when it becomes available on our website.
 
Friday's webinar will be a chance to hear updates on the project including our recently announced project extension.  Join Chris Ponting, Sonya Chowdhury and Andy Devereux-Cooke from the DecodeME team to hear the latest news and what's next for the project.  There will also be a Q&A session at the end.  Send us your questions ahead of the webinar.  If you can’t make the webinar, don’t worry. There will be a recording available afterwards on our website.

Also, see our previous DecodeME articles.
 
For further background information, including information from Action for ME, The Medical Research Council, the National Institute for Health Research, the ME Association, and press articles go to our group’s previous •  DecodeME  blogs  These include -
 
• DecodeME the ME/CFS Study August 2023 Newsletter 
• ME/CFS Biomedical Partnership - Genetics Research - DecodeME UPDATE (2 September) ;
• ME/CFS Biomedical Partnership - Genetics Research. ;
• Biomedical Genetics Research: The ME/CFS Biomedical Partnership.

•  DecodeME  •  Research 

DecodeME
We aim to find genetic causes of why people become ill with myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) with our ground-breaking research.
 
March 2024 Newsletter update from the DecodeME Study
We have an important project update to share with you.  DecodeME participants have done a great job completing questionnaires and returning spit samples. But the next step - extraction of DNA at UK Biocentre - has faced operational and capacity issues.
 
We have been working hard with UK Biocentre to resolve as many of these issues as possible and to avoid delays. While some issues were mitigated, it became obvious that we simply would not have enough time to perform all necessary data analyses by August 2024, the planned end date.
 
We discussed this situation with both our Scientific Advisory Board and funders. They agreed with our assessment and funding has been awarded to extend the project until August 2025. This will give us sufficient time to finish the project.
 
We are acutely aware of the urgency to deliver the study results as soon as possible and we continue to work as hard as we can to fulfill these goals. We remain fully committed to completing this research to the highest possible scientific standards, ensuring that our findings are as robust as possible.  To find out more, please read our blog here.  
 
Warmest wishes,
The DecodeME Team
DecodeME Partnership, 
42 Temple Street, Keynsham, BS31 1EH,,
www.decodeme.org.uk

Also, see our previous DecodeME articles.
 
For further background information, including information from Action for ME, The Medical Research Council, the National Institute for Health Research, the ME Association, and press articles go to our group’s previous •  DecodeME  blogs  These include -
 
• DecodeME the ME/CFS Study August 2023 Newsletter 
• ME/CFS Biomedical Partnership - Genetics Research - DecodeME UPDATE (2 September) ;
• ME/CFS Biomedical Partnership - Genetics Research. ;
• Biomedical Genetics Research: The ME/CFS Biomedical Partnership.

•  DecodeME  •  Research 

Over 26,000 people have signed up and completed their questionnaire.  Currently around 4,000 spit kits have been sent out and not yet returned.  If you have received your kit, but have not yet returned it, please do so by 31 January 2024.
 
DecodeME - 
We aim to find genetic causes of why people become ill with myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) with our ground-breaking research.
 
November 2023 Newsletter update from the DecodeME Study
 
We have now closed all participant recruitment and would like to thank everyone who has given their precious time and energy to become a participant in DecodeME.
 
Over 26,000 people have signed up and completed their questionnaire, and over 21,000 have been invited to provide a DNA sample. This is an amazing achievement. Watch our video message here.
 
We are absolutely delighted to be moving forward to the next stage with such a strong cohort of participants.  Thank you to everyone for your extraordinary participation!
 
As we now move on to the next stage of the study, our focus is on getting as many spit kits back as possible.  We currently have around 4,000 spit kits that have been sent out and not yet returned.  If you have received your kit, but have not yet returned it, please do so by the 31 January 2024. As there can be unpredictable delays with the post, especially over the holiday season, please post your kit back to us as soon as possible and before this date, if you can.
 
If you have questions about returning your sample, then our FAQ page has a number of answers that might prove useful.  Each sample returned will strengthen the results of our research, so we really appreciate every kit sent back.
 
Finally, for a fuller update on the study and what to expect next, you can watch our most recent webinar here.  Subtitles, a transcript and an audio-only file are available. 
 
Thank you for supporting the study,
we couldn’t do this without you!
Warmest wishes,
DecodeME Partnership, 
42 Temple Street, Keynsham, BS31 1EH,,
www.decodeme.org.uk
 
 
Also, see our previous DecodeME articles.
 
For further background information, including information from Action for ME, The Medical Research Council, the National Institute for Health Research, the ME Association, and press articles go to our group’s previous •  DecodeME  blogs  These include -
 
• DecodeME the ME/CFS Study August 2023 Newsletter 
• ME/CFS Biomedical Partnership - Genetics Research - DecodeME UPDATE (2 September) ;
• ME/CFS Biomedical Partnership - Genetics Research. ;
• Biomedical Genetics Research: The ME/CFS Biomedical Partnership.

•  DecodeME  •  Research 

Join the world's largest study of ME/CFS. before the middle of November.
DecodeME -  We aim to find genetic causes of why people become ill with myalgic encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) with our ground-breaking research. Take part from your home.
 
October 2023 Newsletter update from the DecodeME Study
 
DecodeME, the world largest genetic study into ME/CFS, are now in the final stage of participant recruitment.
 
At 5pm on the 15th of November, DecodeME will be closing their registration portal to both new participants and to those who have signed up but not completed their questionnaire.
 
This is the last opportunity to sign up and be part of the ground breaking DecodeME study.  If you haven't already done so, please join those in the ME/CFS community who are doing something extraordinary by taking part.
 
Participants, who sign up and complete their questionnaire by the 15th of November deadline, and who are invited to participate in the DNA stage of the study, will be sent a spit collection kit. Final deadline for posting these back to DecodeME is the 31st of January 2024.
 
So, if you, or someone you know, are 16 or older, live in the UK and have a diagnosis of ME/CFS, please do take part now to help us decode ME/CFS at www.decodeme.org.uk/portal
 
Thank you for supporting the study,!
Warmest wishes,
DecodeME Partnership
42 Temple Street, Keynsham, BS31 1EH,
www.decodeme.org.uk
 
Also, see our previous DecodeME articles.
 
For further background information, including information from Action for ME, The Medical Research Council, the National Institute for Health Research, the ME Association, and press articles go to our group’s previous DecodeME blogs  These include -

• DecodeME the ME/CFS Study August 2023 Newsletter 
• ME/CFS Biomedical Partnership - Genetics Research - DecodeME UPDATE (2 September)
• ME/CFS Biomedical Partnership - Genetics Research
• Biomedical Genetics Research: The ME/CFS Biomedical Partnership

•  DecodeME  •  Research 

Join the world's largest study of ME/CFS.
DecodeME - We aim to find genetic causes of why people become ill with myalgic encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) with our ground-breaking research. Take part from your home.

August 2023 Newsletter update from the DecodeME Study
 
As we approach one year since DecodeME’s full launch, we’d like to update you on how things have been going.

• Firstly, we can confirm that over 23,000 people have signed up and completed their questionnaire, over 19,000 of whom have also been invited to provide a DNA sample. This is great news, thank you to everyone who has participated!

 

• However, we are still only 75% of the way to reaching our goal, so we still need more participants! Please continue to help us spread the word to people with ME/CFS about the opportunity to take part in the world’s largest ME/CFS research study! You can find resources to help you do this on our Ways to Share page.

 

• We recently became able to invite more participants to donate their DNA to the study, you can read more about this change in our blog post: Inviting More Participants to Donate DNA.

 

• Initial findings from the DecodeME Questionnaire Data Published. Having analysed the questionnaire data from the first 17,000 participants, our findings, have been published by NIHR Open Research. You can read the summary of the findings on our blog.

 

• DecodeME’s Investigator Professor Chris Ponting recently spoke about the study and the importance of ME/CFS research in Thomas McCann’s documentary ‘Living With ME’. You can watch the full documentary on YouTube. (Trigger warning: the full documentary contains conversations on suicide).

 
If you haven’t yet signed up as a participant in the DecodeME study, but would like to do so, please visit www.decodeme.org.uk/portal.

Thank you for supporting the study, we couldn’t do this without you!
Warmest wishes,
The DecodeME Team
DecodeME Partnership
42 Temple Street, Keynsham, BS31 1EH,
www.decodeme.org.uk

DecodeME explains how to sign up and take part in this research, plus how you can sign up for future newsletters via their website.
Together we can decode ME/CFS.  Scientists and people with ME/CFS, carers and charities have come together to create DecodeME.  It’s a huge genetic study that aims to uncover causes of ME/CFS, pointing the way towards effective treatments.
 
For more information on the study and taking part, view the DecodeME Study Documents, and sign up for their newsletter updates.

 
Also, see DecodeME recent news from Action for ME and the ME Association.
 
Action for ME (AfME)
DecodeME: Initial Questionnaire Findings Published
August 24, 2023
Today, the initial findings from the DecodeME questionnaire data collected from the first 17K participants have been published on NIHR Open Research. You can find a summary blog of the article on the DecodeME website here.
 
The ME Association (MEA)
Guardian: Women with ME tend to have more symptoms than men, study suggests
August 24, 2023
Please refer to Dr Shepherd's Q & A at the bottom of this blog about why more women than men develop ME/CFS
Study of chronic fatigue syndrome also finds women are more likely to develop worse symptoms over time
 
 
For further background information, including information from Action for ME, The Medical Research Council, the National Institute for Health Research, the ME Association, and press articles go to our group’s previous •  DecodeME  blogs  These include -
ME/CFS Biomedical Partnership - Genetics Research - DecodeME UPDATE (2 September); 
ME/CFS Biomedical Partnership - Genetics Research.;
Biomedical Genetics Research: The ME/CFS Biomedical Partnership.

•  Action for ME  •  DecodeME  •  M.E. Association  •  Research 

DecodeME Funding announcement gets a big response. We were blown away by the response when we announced funding for the DecodeME study in June. Thousands of people shared and posted on social media, and both The Times (paywall) and the Guardian ran articles.
 
The first DecodeME webinar Q&A
You can watch the full webinar, or view answers to individual questions here.
On 6 July, over 2,000 people joined our live webinar on Zoom and Facebook. Professor Chris Ponting, Dr Eliana Lacerda, Andy Devereux-Cooke and host Sonya Chowdhury answered questions such as “I registered online, what happens next?”, “How are you identifying people to take part?” and “Can those outside the UK take part?”.
 
See the DecodeME website to find out how to Get Involved in DecodeME, and read  the FAQs, The Science plus the news Updates
 
At the end of July, the ME Association’s published an in-depth interview with Chris Ponting, lead investigator for DecodeME
Meet The Scientist: Professor Chris Ponting - DecodeME. Professor Ponting took time out from his busy schedule to talk to the ME Association about the DecodeME study that seeks to understand the causes of M.E. In turn, it could help advance the discovery of effective treatments for M.E. which are so desperately needed.
 
For further background information, including information from Action for ME, The Medical Research Council, the National Institute for Health Research, the ME Association, and press articles go to our group’s previous blog ME/CFS Biomedical Partnership - Genetics Research. , and our January blog -  Biomedical Genetics Research: The ME/CFS Biomedical Partnership.

•  Research • DecodeME 

Become Involved, Including a Free Webinair Q&A on Monday 6 July. 
DecodeME has secured funding for a very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it.
On Monday 6 July at 4pm the DecodeME Management Team is hosting a free webinar Q&A, open to all.  The study should help us understand the disease and ultimately find treatments.  DecodeME is the ME/CFS Biomedical Partnership, a collaboration between researchers and people with ME/CFS, carers and the public.
Join DecodeME to help create the world’s biggest study of the causes of ME/CFS.  To find out more about the study you can read the latest updates, FAQs and explanation of the science.
 
Action for ME (AfME) -
DecodeME gets £3.2 funding for ME/CFS DNA study.
Patients, scientists and advocates are celebrating £3.2m funding for DecodeME, the largest ever ME/CFS DNA study, announced today.
As part of the ME/CFS Biomedical Partnership, Action for M.E. is thrilled that, thanks to funding awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, a ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.  DecodeME will look at samples from 20,000 people with ME/CFS, in the hope that the knowledge discovered will aid development of diagnostic tests and targeted treatments.
 
The Medical Research Council -
The largest genetic study into Myalgic Encephalomyelitis in the UK, led by a partnership of patients and scientists, is launched.
A new study has been funded to analyse samples from 20,000 people with myalgic encephalomyelitis (ME), also diagnosed as chronic fatigue syndrome (CFS, or ME/CFS), to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.  The study, ‘DecodeME’, is jointly funded by the MRC and National Institute for Health Research (NIHR) with £3.2 million (£1.8 million MRC, £1.4 million NIHR) and hopes to aid development of diagnostic tests and targeted treatments.
 
National Institute for Health Research -
Largest genetic study into myalgic encephalomyelitis is launched.
A new study has been funded to analyse samples from 20,000 people with myalgic encephalomyelitis (ME) to search for genetic differences that may indicate underlying causes or increase the risk of developing the condition.  The study, jointly funded by the National Institute for Health Research and the Medical Research Council with £3.2m (£1.4m NIHR, 1.8m MRC), hopes to aid development of diagnostic tests and targeted treatments.
 
ME Association (MEA) -
Free Leaflet: DecodeME – The Largest Ever Genetics Study! 
Patients, Scientists, and Advocates Celebrate £3.2m Funding for DecodeME, the Largest Ever Genetics Study!
This is a free 2-page leaflet about an exciting new study that we hope will be shared with anyone who has ME/CFS and might be interested in taking part.  Please register your interest now by visiting the DecodeME website. The study will begin in September with recruitment from March 2021.  Full details about the study’s launch, with comment from all involved, are available in the press release from 23rd June 2020.  Please note: Members of the ME Association will receive this free leaflet with the July issue of ME
 
Further AfME article -
"We can make DecodeME a success by working together." 
 
Further MEA articles -
MRC: Largest Genetic Study into ME is Launched! 
The DecodeME Genetics Study: Letters to The Times.
Patients, Scientists, and Advocates Celebrate £3.2m Funding for DecodeME, the Largest Ever ME/CFS DNA study!  Includes, UK Announcements

• The Medical Research Council: The largest genetic study into myalgic encephalomyelitis in the UK, led by a partnership of patients and scientists, is launched
• The Times: Chronic fatigue syndrome: Search for genetic clues by Sean O’Neil
• The Times: Chronic fatigue syndrome: ‘It felt like I’d been in a car crash’ – Case Studies by Sean O’Neil
• The Times: Chronic fatigue syndrome: Debilitating condition that leaves opinion divided by Tom Whipple
• The Guardian: UK to launch world’s largest genetic study into chronic fatigue syndrome by Haroon Siddique

Further information -
From the Independent   - Chronic fatigue syndrome sufferers hope for breakthrough as they fight for recognition.  DecodeME, the world’s biggest genetic research project into CFS, will examine the DNA of 20,000 people frustrated by misunderstandings of their condition.
 
From Australia’s Mirage News  - DecodeME, largest ever DNA study into myalgic encephalomyelitis, awarded £3.2m funding. Despite its high cost to patients, the economy, the NHS and society, very little is known about the causes of ME, also diagnosed as chronic fatigue syndrome (CFS, or ME/CFS), including how to treat it effectively.
 
From Health Rising,  - DecodeME – U.K. Funds Largest ME/CFS Study Ever In Attempt to Get at Genetic Roots of the Illness.  Cort Johnson points out  - “Simon McGrath, in his blog “UK spends £3 million on the world’s biggest ME/CFS study“, pointed out that of the two funders of the study, the Medical Research Council (MRC) has only funded a few fairly small biomedical studies in ME/CFS before, and the National Institute of Health Research has never funded any.”
 
For further background, see our January blog -  Biomedical Genetics Research: The ME/CFS Biomedical Partnership.

•  Action for ME  •  DecodeME  
•  M.E. Association •  Medical Research Council 
•  National Newspapers  •  Research 

A very large genetic study into ME/CFS.
The ME/CFS Biomedical Partnership are asking for help.  Sign up on the website, to indicate if you want to hear about the study, and whether you want to take part.  The FAQs page answers many questions, under several topics - Science/Research; Recruitment/Taking Part; Funding; The Partnership; and Public & Patient Involvement.
ME/CFS Biomedical Partnership: Genetics and Biomarkers is a partnership of researchers, people with ME/CFS, carers and the public.

Early in 2020, the partnership will make a grant application to the Medical Research Council and the National Institute for Health Research for a very large genetic study into ME/CFS known as a genome-wide association study.
The project will be led by Prof Chris Ponting at the University of Edinburgh in partnership with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine.

The study will analyse DNA from the saliva of 20,000 ME/CFS patients to see whether ME/CFS is partly genetic and if so, what causes it. The study should help us understand the disease and find treatments.

The ME/CFS Biomedical Partnership Patient and Public Involvement (PPI) Steering Group is made up of people representing groups or networks from the ME/CFS community, including Sonya Chowdhury of Action for ME (AfME), Dr Charles Shepherd of the ME Association (MEA), and the Countess of Mar of Forward-ME.

Find out more -
AfME and the MEA both recently gave further explanations, and the MEA January monthly survey asks -  would you be willing to take part in research that will investigate the genetics of M.E.?

Two recent useful explanatory blogs, both with comments and responses -
• Trial By Error: The UK’s Proposed Genetics Study, By David Tuller, DrPH.
• Sign up! Your support could help win funding for a game-changing ME/CFS study, By Simon McGrath.

Further background information can be found from the AfME article “ME/CFS Biomedical Partnership”, plus the Forward-ME six page leaflet “The ME/CFS Biomedical Partnership: Genetics and Biomarkers Genome-wide association study: Questions & Answers”, and the MEA article “ME/CFS Biomedical Partnership PPI Steering Group Update”.

•  Action for ME  •  DecodeME  
•  Forward ME  •  M.E. Association 
•  Research