There’s still time to participate in Action for ME’s Big Survey! To take part and find out more, head to Action for ME’s website: actionforme.org.uk/research-… Thank you for supporting ME/CFS research.
2
7
604
📢Action for ME has launched The Big Survey We’re sharing this from DecodeME as we think many of you may be interested in taking part - but please note, this survey is separate from DecodeME’s research. For more information, FAQs, and to take part: tinyurl.com/yzfb8uhw
1
15
39
1,926
As we move into the next phase of our study, we would like to say a huge thank you. Going forwards, we will no longer be able to respond to emails & check social media. Stay up to date through our email list - sign up at the bottom of our new homepage: shorturl.at/46QSk
1
12
59
1,465
If you took part in DecodeME, your data will continue to be held securely by Edinburgh Uni. To update your details/ consent, please email decodeme@ed.ac.uk. For general info or support, please contact Action for ME at infosupport@actionforme.org.uk or 0117 927 9551.
1
6
32
932
We shared our initial DNA results over the past few weeks to a wonderful response & widespread media coverage. Now, we are moving into the next phase of the study & have updates to share. Check out our blog post to find out what’s next for DecodeME: shorturl.at/Y1hXm
18
55
1,145
Interested in supporting future ME/CFS research? @EdinburghUni & @actionforme are expanding on DecodeME’s research through projects like SequenceME & Long Covid, which will use DecodeME data to study the entire genome. Help support future ME/CFS research: shorturl.at/rRFD9
22
46
2,373
Our genetics results webinar recording is now available! Thank you to the 2500+ people who joined us live last week. For those who want to watch back, or who couldn’t attend you can find it on our new website, here: shorturl.at/Uh8xb
3
35
92
1,981
As we approach the end of August, the new DecodeME website, over on the University of Edinburgh, will now be the central place for our updates and contact information. You can find our new website here: decodeme.ed.ac.uk
28
62
1,495
“This solid scientific data from DecodeME brings new hope. I look forward to seeing where these discoveries lead for pwME, & their families & carers.” -Claire Tripp, DecodeME PPI. A huge thanks to our participants & supporters for making DecodeME possible.
3
10
47
1,285
"Knowing that my DNA was a part of this study gives me a real sense of being part of something that is both exciting and could be the start of real change" We are incredibly grateful to every DecodeME participant. We would not be where we are today without you – thank you.
3
17
106
1,489
(2/2)
3
35
1,451
(1/2) We have been blown away by the public response to our initial DNA results. We’ve been delighted to be featured in a range of news outlets, radio programs & articles. A huge thanks to those who helped spread the word & have helped us put ME/CFS research into the public eye.
9
51
277
5,112
“I am proud that this study was run differently, with lived experience at its heart. Proud that our community stepped up en masse to participate and proud that we are at the forefront of scientific research into this debilitating illness." - Sian Leary, DecodeME PPI
3
30
141
2,129
“DecodeME shows the incredible level of support that the ME/CFS patient community can give to research that involves them on a deep and meaningful level. Without the community, we could not have achieved all that we have.” Andy Devereux-Cooke (PPI Member and Co-Investigator)
1
38
168
5,690
See you soon for our genetic results webinar! Spots are limited to 3000, and registering does not guarantee a spot. Don't worry - we will also be sharing it live to our Facebook page at the time facebook.com/decodeMEstudy as well as recording it so that you can watch it back.
12
49
1,217
Together we’ve marked a turning point, and on behalf of the DecodeME team - thank you 🙏
27
44
220
5,146
Join us TOMORROW for our genetic results webinar! Register here: shorturl.at/fnB67 There are limited spots to join on Zoom (registering does not guarantee a spot). Don’t worry though, we will be recording it and we will also be sharing it live on Facebook at the time.
2
20
70
3,707
“These results are ground-breaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets.” - Sonya Chowdhury Find out how to support future research that builds upon DecodeME: shorturl.at/uO75u
16
72
1,497
"DecodeME is now calling on researchers worldwide to join us in accelerating ME/CFS research.” - Prof Chris Ponting (DecodeME Investigator). We encourage researchers to explore and build on our findings. Apply for access to our rich dataset now shorturl.at/F8aOM
4
116
289
8,031
Got a question about our results? Our FAQs page has more information about our initial genetic results and what they mean for people with ME/CFS: shorturl.at/y4CwG . You can also join our webinar on Thursday where there will be a Q&A session: shorturl.at/fmrwl
2
31
71
3,130
Two days ago, we released our initial genetic results! Want to learn more about our findings? Have questions for our management team? Register for our genetic results webinar now: shorturl.at/RywTZ There will be a recording available afterwards on our  website.
2
40
119
3,648
Today is #SevereMEDay - a day to recognise and honour the people living with the most devastating forms of Myalgic Encephalomyelitis (ME). We are deeply grateful to those with Severe ME who took part in the DecodeME study. Your contribution is vital.
3
42
187
3,080
'Each genetic signal is like an ‘X’ on a treasure map indicating roughly where the researchers should dig for treasure.' Check out Simon McGrath’s blog to learn about the science behind the initial results: shorturl.at/hadjF
44
126
5,593
The Management Team are delighted to announce DecodeME’s initial DNA results & discuss what this means for #pwME & future research. A huge thanks to all our participants for giving their time, energy & DNA to the project. Learn more about our findings: shorturl.at/XOVJ1
5
66
251
4,396
(2/2)
6
77
276
13,257
(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results:  shorturl.at/pgsjk
15
234
565
27,151
Our initial DNA results! DecodeME have discovered that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. Summary of our results: shorturl.at/pgsjk Check out our full preprint paper: shorturl.at/VwN3s
59
339
795
90,296
The initial DNA results from DecodeME are coming this week! We will release them on our website on Wednesday 6th August at 7pm (approx). We're letting you know the timing in advance so you can pace beforehand. Thank you to our participants & supporters.
7
72
242
13,210
This week, the project team reached a significant milestone: we are into the final analysis stage which tests millions of DNA variants for their association to ME/CFS. Completion of the write-up and announcement of the results will follow as soon as possible.
4
68
245
6,396
"Being part of DecodeME’s PPI Steering Group has given me the chance to turn my daughter’s life-altering illness into something purposeful…” - Claire Tripp. PPI is at the heart of #DecodeME, providing lived experience & expertise to ensure #pwME have their voices heard.
9
50
1,589
This World ME Day, I reflect with pride on the Patient and Public Involvement (PPI)...this is research done differently – because we deserve better.” - Sian Leary. PPI is at the heart of #DecodeME, providing lived experience & expertise to ensure #pwME have their voices heard.
11
55
1,292
This #WorldMEday we want to take a pause & recognise the challenges, stigma & neglect that many #pwME face. We hope that #DecodeME can pave the way forward in accelerating research into M.E./CFS & will help to set a standard in research to include voices of pw lived experiences.
8
76
200
4,574
We’re the world's largest genetic study of ME/CFS. We’ll be sharing our findings on here when available, so follow DecodeME to find out more about our study in the meantime, and help our science reach more people in the #MECFS community. 🧬 #DecodeME #MECFS #chronicillness #pwME
13
78
292
9,354
"What the research field now needs most urgently, says Ponting, is a robust scientific foundation…DecodeME, the largest ME/CFS study to date, is now taking a step in this direction in GB" shorturl.at/VJj06 To read in English, open in Chrome & use the translate function.
1
10
48
1,349
Happy New Year from #DecodeME. We're sending our best to you and your loved ones for the year ahead. We are now deep into the exciting stage of analysing the DecodeME data, and anticipate the initial DNA results to be available by the middle of 2025. #DecodeME #MECFS #pwME
1
22
106
2,041
#DecodeME is now closed for the holidays! Thank you for everything you have helped us achieve together this year & for your continued support. We are now deep into the exciting stage of analysing the data & anticipate the DNA analysis to be complete by the middle of 2025 #MECFS
2
4
58
1,159
We’d like to say a HUGE thank you to everyone for helping us achieve so much this year. You have helped us create the largest cohort of ME/CFS in the world & we're now deep into analysing the data! We anticipate the DNA analysis to be complete by the middle of next year.
3
31
129
2,899
This festive season, we’d like to encourage those with a loved one w/ME to gift an act of kindness. Ask what would be most helpful and comforting to them, what may seem small to you could be immensely helpful & meaningful to someone living with ME #DecodeME #RandomActsOfKindness
1
39
88
4,010
Hear @JennieJacques1 and @CGATist discuss what’s needed in ME research, including the objectives and science behind the DecodeME study, and the opportunities for data access. Watch on Jennie's YouTube channel ,‘The Monster in ME’ piped.video/G-sdP7QuGnE?si=E8aF…
17
45
1,941
Thanks to the thousands of #pwSevereME who took part in #DecodeME, we know that being female, older & having #ME for 10+ years = more likely to have #SevereME. During genetic analyses, we hope to make further discoveries & direct future research toward treatments/cure for #pwME
4
76
201
5,635
*TRIGGER WARNING* Last night, Action for ME CEO Sonya spoke to BBC News Scotland’s The Nine programme about the impact of ME and the need to accelerate research. Sonya appears from 10 minutes in, watch here: bbc.co.uk/iplayer/episode/m0…
1
9
26
1,687
Tune into @BBCScotlandNews today at 9pm to hear @actionforme CEO, Sonya Chowdhury, talk about ME
1
11
26
1,393
Tune into BBC Radio Scotland Drivetime around 4:45pm today to hear Action For ME CEO, Sonya Chowdhury, talk about #MECFS
2
14
700
DecodeME Investigator, Chris Ponting, talks to BBC Radio Scotland about DecodeME, what is ME? and the need for funding around ME research. Go to 24:52 bbc.co.uk/sounds/play/m0021h… to hear his interview. #DecodeME #MECFS #pwME
2
34
95
4,218
@PSPForMECFS has just launched a researcher toolkit for #MECFS. ➡️ shorturl.at/5qxYT Here researchers can find funding opportunities, guides to embedding PPI, researcher application support & more.
7
8
327
#DecodeME will be presenting at the BACME conference today. As this is a clinician focussed event, & not everyone can attend, we wanted to share our presentation*. decodeme.org.uk/media/ *This is a prerecording of the presentation that will be delivered live at the conference.
5
19
68
6,286
Through accessing consented #DecodeME data, University of Glasgow are helping us accelerate research into MECFS. To read more about @UofGlasgow x #DecodeME, go to: shorturl.at/qtST8 #GlobalVoiceForME #WorldMEDay
14
60
8,261
Following #WorldMEday, we wish to champion our partners who are helping us accelerate research into #MECFS. To read more about @precisionlifeAI x #DecodeME go to: shorturl.at/qHLVW #GlobalVoiceForME
6
34
1,135
Our PPI group is at the heart of #DecodeME. They provide lived experience & expertise to ensure National Standards for Public Involvement are met. This #WorldMEDay we want to thank them for their commitment to accelerating research into #MECFS & all their behind the scenes work
6
46
1,182