The world's largest study ever into #MEcfs. #pwME #DecodeMEStudy #pwME #MillionsMissing
United Kingdom
Joined November 2019
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DecodeME the ME/CFS Study retweeted
The ME Association are pleased to announce that we have awarded .@DecodeMEstudy the Howes-Goudsmit Award 2025 for their extensive work and commitment to their genome-wide association study.
Find out more: meassociation.org.uk/ir3e
#MECFS #pwME #SevereME #MyalgicE #DecodeME #HowesGoudsmitAward
DecodeME the ME/CFS Study retweeted
ME, or Myalgic encephalomyelitis, is linked to your genetics, an early study by Decode ME has suggested.
They’ve found eight areas of genetic code in people with ME are ‘significantly different’ to the DNA of people without the disease.
The results still need to be reviewed, but the University of Edinburgh research team hope these results will pave the way for future research and the development of drugs.
DecodeME the ME/CFS Study retweeted
Dec 11: Prof Chris Ponting is #ThereForME! @CGATist leads @DecodeMEstudy, the world’s largest ME genetic study.
“My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
ALT A pretend polaroid shows a very Christmassy Chris Ponting posing for a photo holding a #ThereForME Christmas card. He is wearing a very fetching Santa hat and a tinsel garland The image on the card shows two presents, one labelled "patient safety", the other "research". The photo is labelled "11". The design is in the #ThereForME colours.
ALT This second image displays Chris’s handwritten message. It reads “My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
DecodeME the ME/CFS Study retweeted
2/2
The webinar will feature a number of speakers:
• @SonyaChowdhury
• @CGATist
• Audrey Ryback
• Prof Simon Carding
& a 30-min Q&A session w. speakers & other GCoE partners on the future direction of ME genetic research
📧 email questions to [email protected]
DecodeME the ME/CFS Study retweeted
There is no help – final message of woman with ME bbc.in/4c1PbFI
DecodeME the ME/CFS Study retweeted
Sharing impact from @DecodeMEstudy with @CGATist @actionforme for @EdinburghUni colleagues as a result of patient & public involvement @ the very heart #MyalgicEncephalomyelitis #MECFS
DecodeME the ME/CFS Study retweeted
Female healthy participants needed for ME/CFS study in Sheffield!
Can you take part in our study as a healthy participant? Or if you're an ME/CFS patient, can you share this flyer with a friend (not blood related)?
Find out more at: forms.gle/MWPVwXZzivpc8wui9 #MEResearch #MECFS
DecodeME the ME/CFS Study retweeted
ℕ𝕖𝕨 𝔼𝕡𝕚𝕤𝕠𝕕𝕖
Available this morning
Includes a brief update about @DecodeMEstudy
A little bit about resting and hobbies
And a teaser of a couple of guests that will drop in to chat soon
#chatwithme #chatwithmepodcast #pwME #MEandparenting
podcasts.apple.com/gb/podcas…
DecodeME the ME/CFS Study retweeted
Thank you @bbc5live for discussing #MECFS on your show just now, highlighting the @DecodeMEstudy and raising awareness @actionforme
Still time to take part in the world's largest ME study - if you're over 16, live in the UK & have diagnosis of ME/CFS
decodeme.org.uk
DecodeME the ME/CFS Study retweeted
Women with ME tend to have more symptoms than men, study suggests dlvr.it/Sv4zpZ
DecodeME the ME/CFS Study retweeted
𝕀𝕥’𝕤 𝔸𝕝𝕚𝕧𝕖
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…well it’s live and ready for your ears
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Episode 6 DecodeME special is up and available via the podcast station of your choice
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Link in bio
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#chatwithmepodcast #LearnFromME #countMEin #blog #parentingwithME #decodeMEstudy #actionforme #millionsmissing
DecodeME the ME/CFS Study retweeted
Our CEO, @SonyaChowdhury, was featured on the latest episode, "Securing Change For The Future", of the @FreshrbCIC “Everyday People Talking Health” Podcast.
Sonya discusses #LongCovid, #MECFS and our projects such as @DecodeMEstudy and the work of the @WorldMEAlliance.
DecodeME the ME/CFS Study retweeted
Thank you @bjhcm for sharing our article amongst your extensive readership highlighting parallels between #MyalgicEncephalomyelitis #LongCovid and for allowing us to share our @actionforme membership magazine in December
In a recent publication featured in the @bjhcm, our CEO, @SonyaChowdhury, along with our COO, Shane Davies, and our medical advisor, Prof @DocStrain discussed the overlap between #LongCovid and #MECFS, and what this could mean for research and management of these conditions.
ALT British Journal of Healthcare Management logo. Quote by Sonya Chowdhury, CEO of Action for M.E.: The article discusses the overlap between long COVID and M.E. and what this could mean for the research and management of these illnesses. In the article, Dr David Strain, Shane Davies and I discuss the current research, highlight the revised NICE Guideline and the DecodeME study alongside providing thoughts on the role of healthcare managers and clinical professionals in improving care and support for people with either or both illnesses. Action for M.E. logo.
DecodeME the ME/CFS Study retweeted
. @DecodeMEstudy has been sharing images for #WorldMEDay about why #DecodeMEMatters to #pwME , carers as well to those working in #MECFS research and advocacy - including Dr Charles Shepherd.
Dr Charles Shepherd, Honorary Medical Adviser to the ME Association:
"Having been involved with the initial planning of DecodeME it's wonderful to now see a research team involving both scientists and patients leading the way when it comes to research into the genetics of ME/CFS.
If you haven't already volunteered to take part in DecodeME please do sign up and help us to discover what could be vital genetic clues
about the cause of ME/CFS."
Take part (if you haven't already) here: decodeme.org.uk/portal/
#MyalgicE #MyalgicEncephalomyelitis #DecodeME #DecodeMEStudy #DNAresearch #Research
1/2 - For #WorldMEDay we shared why #DecodeME matters to #PwME , carers as well to those working in #MECFS research and advocacy.
Thank you so much to everyone who has already taken part and helped us to spread the word.
It's not too late to take part: rb.gy/a017u
DecodeME the ME/CFS Study retweeted
Together, we are shaping the future of healthcare through research! Over the next few months we’ll be celebrating #NHS75 by sharing some of our stories and showing ways that you can #BePartOfResearch.
Find out more about our campaign :nihr.ac.uk/explore-nihr/camp…
ALT Shape the future. #BePartOfResearch
DecodeME the ME/CFS Study retweeted
We're thrilled to announce that we've been named as finalists in FIVE categories for this year's @PRCA_Scotland awards! 🥂
Congrats to the team for their hard work and incredible dedication! #PublicRelations #PRCADareAwards #finalists
@NRobotarium @ConvergeC @DecodeMEstudy
DecodeME the ME/CFS Study retweeted
.@DecodeMEstudy, already the world's largest #MECFS study, has a number of resources available to help #pwME raise awareness of the study.
Printable posters, info sheets and leaflets are all available at the link below.
#MEAwarenessHour
decodeme.org.uk/ways-to-shar…
DecodeME the ME/CFS Study retweeted
This from @DecodeMEstudy gave me a little needed cheering up today. Spit in a kit to do your bit!
#DecodeMEStudy #pwME #MECFS
#LongCovidAwarenessDay #millionsmissing
DecodeME the ME/CFS Study retweeted
Episode 8 of our Learn about M.E. podcast is live! 🎙️
We’re excited to release the next podcast episode in our Learn about M.E. series, focusing on the ground-breaking @DecodeMEstudy and why it's important to #pwME.
DecodeME the ME/CFS Study retweeted
Thank you @RobinSwann_MLA for highlighting core problem in #MEcfs healthcare inequalities & #PatientSafety
We’ve worked V hard to provide an opportunity to address the fact on #WorldMEDay #LearnFromME #DeliveringTogether
Book early places are limited 👇
eventbrite.co.uk/e/deliverin…
