DecodeME the ME/CFS Study @DecodeMEstudy Twitter profile

Pinned Tweet

DecodeME the ME/CFS Study

6 months

#DecodeME has now closed participant recruitment. A HUGE thank you to everyone who has signed up and contributed to our study. If you have been sent a saliva kit, please look to return the sample to us as soon as you can.

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

The DecodeME study is now open. You can take part now by visiting and signing up. You can read our full statement about today's launch here Thank you for your support. #pwme #decodeme #decodmestudy #MECFS

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

**BREAKING NEWS** £3.2m research funding for #MECFS awarded jointly by @the_MRC @NIHRresearch for @decodeMEstudy , led by @CGATist @mrc_hgu @mecfsbiobank @LSHTM @sonyachowdhury @actionforme @s4me_info Visit for FAQs and to register to take part!

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

Since we launched, less than 24 hours ago, more than 10,000 #pwME in the UK have registered for to take part. This is absolutely amazing. Thank you! Please keep sharing the link to support #DecodeME , the world's largest #MECFS DNA study.

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

We're excited to announce that #DecodeME is ready to fully launch in SEPTEMBER! If you’ve signed up for emails, we’ll email you when we open recruitment. Register for updates here #pwME #MECFS #decodemestudy #biomedicalresearch

Home - DecodeME

Join the ME/CFS Biomedical Partnership to help create the world’s biggest study of causes of ME/CFS.

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

We're thrilled at the enthusiastic response from the ME community about launching #DecodeME today. Just a reminder that the study questionnaire doesn't have to be done today or all in one go. So please take your time and pace yourself. 💙

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

Big news! The @DecodeMEstudy team is testing spit kits, ahead of our launch in the new year. This includes the process of giving a saliva sample (containing your DNA) & posting it back. 📮 We're making sure samples reach us safely. 🧬 Who else is excited for the launch? 💙

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

Wow, 18,000 registered participants. 13,500 completed the questionnaire = a huge dataset on ME. Not everyone will be invited to provide a DNA sample so we need your help to #DecodeME . Help us now to recruit to the world’s largest study for people with #MECFS

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DecodeME the ME/CFS Study

@DecodeMEstudy

1 year

The first batch of DNA from #DecodeME participants is on the way to @thermofisher to begin analysis. Thank you to for all the recent positive messages. It’s great to see this stage of the study get going! #pwME #MECFS There is still time to take part:

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

"Prof Garner added that doctors needed to stop diagnosing ME as anxiety. His comments come after a new project was launched to examine genetic traits that make people more susceptible to ME." Thank you @TheSun for highlighting #DecodeME

NHS faces 'post coronavirus tsunami' as survivors are struck by ME

THOUSANDS of people recovering from the coronavirus are experiencing symptoms of debilitating condition ME, doctors have warned. The NHS has been put under great strain due to the Covid-19 pandemic…

www.thesun.co.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

10 months

We’ve have over 18k DNA participants! Thank you to everyone who has taken part so far and for the great support in helping us spread the word! We are 75% of the way there, so keep sharing! You can still sign up to #DecodeME : #PwME #MECFS

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

🔴 Great news: DecodeME opens for first participants this month. 🧬 Please RT! Phase 1 opens on January 31 for around 550 people. 🙏Thanks so much for your support. We can't wait to share the study with you! 💙 #MEcfs #PwME #MyalgicE #MillionsMissing

Great news! DecodeME opens for first participants this month. - DecodeME

Quick summary: Great news! DecodeME opens for first participants this month. Recruitment will happen in two phases. Phase 1 opens on January 31 for around 550 people. Once we’re sure everything is...

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

Thank you @GeorgeMonbiot for mentioning #decodeME in this excellent Guardian article on the decades-long neglect of #MECFS and the need for serious investment in research. A further 500 people have so far registered their interest in the study since this article was published!

George Monbiot

@GeorgeMonbiot

3 years

A "post-viral tsunami" is gathering, with devastating consequences for large numbers of people. Some of its effects closely resemble ME/CFS, a condition whose 250,000 sufferers in the UK have been horribly neglected. It's time for action. My column.

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

The first area of behind the scenes work we want to celebrate is a big one! #DecodeMEstudy got ethics approval! Thanks to our patient reps for all their hard work over the last few months. They were vital in making our submissions and ensuring it was a success. #OneStepCloser

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

It is #MEAwarenessDay ! #DecodeMEstudy is the largest genetic study of #MEcfs in the world! We need 20,000 #pwME to participate in the study. Sign up now to be first in line when we launch in September

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DecodeME the ME/CFS Study

@DecodeMEstudy

9 months

We've published our initial findings from the questionnaire data from the first 17k participants. Read our summary blog: Or read the full article: You can still sign up to #DecodeME : #PwME #MECFS

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DecodeME the ME/CFS Study

@DecodeMEstudy

6 months

A HUGE thank you to the more than 26,000 people who completed the questionnaire and over 21,000 people invited to provide DNA (receipt of samples closes on 31 January 2024). We believe we will be able to run a high quality analysis on this size of cohort.

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

🔴Epstein-Barr virus ( #EBV ) can play a key role in causing #MS , a recent study showed. EBV is known to play a role in causing some cases of #MEcfs (through causing glandular fever). #DecodeME will look for evidence that genetic factors make EBV more likely to trigger ME/CFS.🧬

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

At #DecodeME we're working with the 25% ME Group who founded #SevereMEday & will provide phone/ text support to those who need it to take part. Any future ME/CFS study should keep the same focus on accessibility for people with #severeME so they can contribute to research too.

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DecodeME the ME/CFS Study

@DecodeMEstudy

1 year

We’ve reached 10,000 DNA participants! We still need more so please help us spread the word about #DecodeME to #PwME Take part here if you haven’t already: #MECFS

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

Numbers signing up to support/take part in #DecodeME at : 🧬8,144 since we applied for funding in Jan/Feb 🧬Plus 14,213 since we launched on 23 June 🧬Out of 22,357 sign ups, 16,532 live in UK with #MECFS and want to take part. Please keep sharing!

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

Over 10,000 people signed up to take part in our first week with over 7,000 already completing the questionnaire. For an update on week one of the launch, read our latest blog post: #DecodeME #MECFS #pwME #decodemestudy

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

We have now started sending emails inviting #pwME to take part in the online testing phase for the #DecodeMEstudy . 200 people who previously registered have been selected at random to help us test the #DecodeME questionnaire and online system before we fully open recruitment.

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

UPDATE: DecodeME will launch in January 2022. (Please RT to spread the world.) UK recruitment will launch in early 2022 in two phases, starting in January. Read the full update: #pwME #MECFS #MyalgicE

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DecodeME the ME/CFS Study

@DecodeMEstudy

8 months

4,000 spit kits have been sent out and not yet returned. If you still have yours, please try to return it soon. We understand producing a sample can be tricky, see our FAQ for advice: Every sample returned strengthens the results of our research.

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

🙌 AMAZING! Over 26,000 of you* want to take part in the world’s biggest study into the causes of ME/CFS. Join us: While that’s over the 20k we need, we need to recruit many more as not everyone will be eligible or will complete the study process. 🧬🔬

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DecodeME the ME/CFS Study

@DecodeMEstudy

1 year

Did you know that tomorrow is the International Day Of #WomenInScience ? We’re proud to have many strong women on the DecodeME team. Here are just a few of them (who we could convince to share photos!) working hard on DecodeME behind the scenes!

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

We’ve started to let people know whether we’re sending you a spit kit. We know some people will be disappointed to learn if we’re not asking for their DNA. Your questionnaire answers are incredibly valuable to us. We would like to share Sonya’s words from our last webinar.

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DecodeME the ME/CFS Study

@DecodeMEstudy

1 year

20,000 #pwME have completed the #DecodeME questionnaire, providing us with a wealth of information about lived experience of #ME /CFS to understand more about the illness. We still need more participants! You can still take part:

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

There are now 23,248 people in the UK who’ve completed our online form to say that they’d like to take part in the DecodeME study when recruitment begins. Thank you to all who’ve signed up online, offline, or spread the word to other. Sign up today 👉

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DecodeME the ME/CFS Study

@DecodeMEstudy

8 months

Thanks to the Independent for their article today!

Major study hopes to tackle ME stigma

DecodeME is hoping to test 20,000 DNA samples from people living with the condition

www.independent.co.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

We're thrilled that the #DecodeMEstudy protocol has been published in @BioMedCentral journal and is available for all to read. We hope this will help other researchers replicate this #DecodeME #biomedical study for #MEcfs in other countries. Link here

DecodeME study protocol published in BMC Neurology - DecodeME

The DecodeME study protocol has been accepted for publication by BMC Neurology. By publishing our study protocol in this way, we make sure that the design is transparent. This allows other research...

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

UPDATE We now have 20,200 people signed up in the UK alone, though not everyone will be eligible to take part (an unfortunate but inevitable result of the need to fully comply with our research criteria) so please keep sharing! #DecodeME #MECFS #pwME

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

Chris Ponting on the causes of #MECFS "We expect many people will have a virus and not fully recover so there might be a deficit in the immune system. It may be another problem in mitochondria and we will look for that too. We will be looking at all possibilities not just one."

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

If you have ME/CFS, how long have you had #MEcfs symptoms? Or how long has the person you care for...? (By voting, you'll help us understand who is interested in taking part in our DNA research study. Thank you!) Please vote & RT to increase the sample size. #MyalgicE #pwME

Less than a year

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1 - 5 years

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6-15

453

Over 15 years

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

Sign up today! Thank you so much to everyone who has taken part so far – you can still help us by spreading the word! If you haven’t yet signed up or completed your questionnaire you can do so here: #DecodeME #pwME #MECFS

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

At the start of ME Awareness Week, we would like to extend our best wishes to all members of the ME/CFS community. 1/

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

Pls RT: Developed #MEcfs after Long Covid? Sign up for the world's largest genetic study into ME/CFS. We're now also including up to 5k people who developed the illness after #LongCovid . Register your interest and you'll be first to know when we launch:

Home - DecodeME

Join the ME/CFS Biomedical Partnership to help create the world’s biggest study of causes of ME/CFS.

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

We know how important DecodeME is to #pwME We have taken on board the frustration expressed by some who haven't been asked to donate DNA and want to address the points raised. Read our post here: #DecodeME #MECFS #DecodeMEstudy

DecodeME participation and criteria for the DNA stage - DecodeME

An audio recording of this blog post can be found below: DecodeME the ME/CFS study · DecodeME participation and criteria for the DNA stage blog audio We know how important DecodeME is to people...

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

Going into the last full week of August, we’re just over 500 shy of having 20,000 people in the UK signed up to register their interest in #DecodeME . With funding starting in September, help us to reach the 20,000 mark by then by continuing to share 👉

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

“Nobody would choose to live 10 days, let alone 10 years, with #MECFS . #DecodeME is a strong message to #pwME that their suffering is finally being seen.” @SonyaChowdhury in @theipaper today. Huge thanks to @KasiaLDelgado for insightful coverage

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

inews.co.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

9 months

“We have over 100,000 years of personal experience of ME/CFS recorded in our questionnaire responses” Read our summary blog: You can still sign up to #DecodeME : #PwME #MECFS

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

#DecodeME participants also asked for a DNA sample will receive a spit kit in the post soon. It may take some time for the many kits to be sent out. Don’t worry as they are on their way. If you have received yours, share your experience: #SpitToDecodeME

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

We welcome the positive response from the ME community to the draft NICE guideline. Sadly, we still lack effective treatments, the biggest barrier being a lack of understanding of its biological roots. Sign up today to help us break down this barrier.

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

🔴IMPORTANT: #DecodeMEstudy will launch a few weeks later than planned. This is to allow further testing on the study’s web portal and its security. (Content warning: saliva) Full update and first look at the spit kit Thanks so much for your patience.

Important update & first look at 'spit kit' - DecodeME

Blog updated November 2021: DecodeME will launch in the new year. It will launch in two phases, the first starting in January 2022. Read the full update. Important update: DecodeME will launch a few...

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

Thank you to everyone who has helped promote #DecodeMEstudy this evening! You are all amazing! We have had so many #pwME sign up who may not have heard about us until tonight. Our study is only possible because of you! Our study is only possible because of you!

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

💔Heart breaking stories like Jo's @JourneyFog on the neglect faced by p/w #MEcfs show why biomedical research like @DecodeMEstudy is badly needed. Once we understand why people become ill with #MyalgicE , we can eventually improve diagnosis & treatments.

Chronic Fatigue Syndrome: Having ME has left me bedbound for eight years

I had another GP tell me, ‘If you don't get out of that bed soon, you are going to die in it - sooner rather than later’.

metro.co.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

How many people want to take part in #DecodeME ? There are now more than 18,800 people with #MECFS based in the UK who have signed up on our website! BUT we still need lots more... Why is that? ⬇️ (1/3)

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

🧬It’s just a few weeks until funding for #DecodeME kicks in and the project officially begins. 🧬Keep sharing online and offline to help us sign up as many people with M.E. as we can to the study 👉 #pwME #mecfs

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

We estimate #DecodeME coverage by @TimesONeill @thetimes @Haroon_Siddique @guardian @H_W_B @IndyLife @KasiaLDelgado @theipaper @TheSun @BBCRadioScot @johndarvall @bbcrb has reached at least 1.7m people. The more the merrier! Pls keep sharing #MECFS #pwME

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

BIG MILESTONE: @DecodeMEstudy received ethics approval, with the Research Ethics Committee giving a ‘favourable opinion’ of our research. This makes the study one step closer to happening. 💙 Read more:

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

As of this morning, the number of UK-based people who’ve signalled their intent to take part in the #decodeME study stands at 22,184 + those who’ve signed up offline. Thank you all for your continuing support. If you haven't already, sign up at #mecfs

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

🔵We’d like to provide an update on the recruitment start date for the DecodeME study, and tell you about our upcoming Q&A webinar on the steps involved in joining. #pwME #mecfs #biomed

DecodeME recruitment update + April webinar - DecodeME

We’d like to update you on the recruitment start date for the DecodeME study, and tell you about our April webinar on the steps involved in joining.

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

#MEAwarenessMonth is now over but we're still working behind-the-scenes getting ready for #DecodeMEstudy autumn launch. We saw a BIG spike in pw #MECFS signing up thanks to all your tweets on #MEAwarenessDay & #MEAwarenessHour Thanks so much💙 Sign up:

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

We want #DecodeMEstudy to be as accessible as possible for #pwME and those with severe ME. This #MEawarenessWeek we want to know what steps do you think studies like ours should take to ensure more people can participate?

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DecodeME the ME/CFS Study

@DecodeMEstudy

1 year

Today is #RandomActsOfKindnessDay ! When you live with ME, you often appreciate even the smallest gestures from others all the more. Here are just a few of the ways that the people around you could offer their support... #MECFS #PWME #DecodeME #RandomActsOfKindness #RAOK

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DecodeME the ME/CFS Study

@DecodeMEstudy

11 months

Some participants may be recontacted over the next week, as we are now inviting more to donate DNA – read more about this update in our blog post here: There is still time to sign up to #DecodeME : #MECFS #PwME

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

Dr Veronique Vitart, a member of the DecodeME research team, has written a blog on our website detailing a severe-Covid study that has used the same technique that will power DecodeME to uncover the role played by genetics in severe-Covid 19.

Science behind DecodeME uncovers potential Covid-19 treatments - DecodeME

DecodeME's Dr Vitart, Dr Kerr and Prof Ponting are among a group of researchers who have published a study on the role that genetics play in Covid-19.

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

Would you be willing to potentially take part in this research? Would you like us to keep in touch with updates? If so, please follow this link to the mailing list form on our website:

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

Thank you Helen @Independent for highlighting #DecodeME , and how #MECFS leaves people "unable to manage simple daily tasks. ME is thought to be triggered by viral infections, yet the extent of its impact remains underreported, highlighting the crucial need for this study."

Helen Wilson-Beevers

@H_W_B

4 years

I wrote about living with chronic illness for @IndyLife and why we mustn't be left behind when lockdown eases

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

‼️STAY TUNED‼️ During the next two weeks we are going to updating you on everything we have been doing behind the scenes to make #DecodeMEstudy a success when we launch this Autumn. Keep an eye on our socials for details!

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

Thank you! The ME/CFS Biomedical Partnership team want to thank all 8,325 of you who have signed up to express support for our proposed genetic study in the last 4 weeks. Our funding application has been submitted but you can still sign up for updates @

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

Read our latest blog post on the #DecodeME questionnaire - Shining a light on the #MEcfs community: #DecodeMEstudy #pwME

DecodeME Questionnaire – Shining a light on the ME/CFS community - DecodeME

The DecodeME questionnaire is creating a large dataset from tens of thousands of people with ME/CFS like you. It is collecting a wealth of information on important aspects such as common symptoms,...

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

Today is the start of #MEawarenessweek People with #mecfs are at the heart of our work and are involved in all aspects of the research. We want to celebrate them and promote the research on #MEAwarenessDay . Tweet #DecodeMEstudy to join the conversation on Wednesday at 8pm

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

🔵 Involving #pwME in #MEcfs research is essential. @CGATist talks about involving people with lived experience in all parts of @DecodeMEstudy on The Genetics Podcast @sanogenetics Listen: Transcript: (via Sly Saint/ @s4me_info )

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

We've now sent out another 300 emails inviting #pwME to take part in the online testing phase for #DecodeMEstudy . So check your emails! We're also asking for feedback on the process in case we need to tweak it before fully opening recruitment. So please give this when asked.

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DecodeME the ME/CFS Study

@DecodeMEstudy

1 year

“DecodeME is a passion of mine, of every team member [...]. Questionnaire responses are giving us a window into people’s ME, and we’re writing this up now so that everyone can see their value”. An exciting update on #DecodeME progress from Chief Investigator, Prof Chris Ponting!

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

🛑We need *your* help to reach even more people with M.E./CFS. #DecodeMEstudy #pwME Can you RT this please? For the world's LARGEST genetic study of #MEcfs we need 20,000 participants, and your RTs can help us find them.

Home - DecodeME

Join the ME/CFS Biomedical Partnership to help create the world’s biggest study of causes of ME/CFS.

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

Today is the start of #MEAwarenessMonth and we want to celebrate all our partners and future participants who will make #DecodeMEstudy a success. Without the commitment and support of #pwME this study would not have been possible!

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

Q: Are you involving people with severe #MECFS ? A: This is critical. They have been left out of so much, and could give us the largest clues. Our spit-and-post approach should allow those severely affected to take part. #pwME #decodeME

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

It is #MEawarenessHour on #MEAwarenessWeek during #MEAwarenessMonth We want to get #DecodeMEstudy trending on Twitter so please RETWEET and post why research like #DecodeMEstudy is important.

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DecodeME the ME/CFS Study

@DecodeMEstudy

1 year

Today our team members @CGATist , @chicaguapa and Diana Garcia visited the @Biocentre_UK to meet the team there processing DNA spit kits for DecodeME. We're grateful to the team there for showing such genuine interest in the lives of people with #MyalgicE .

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

Don't forget to tweet the hashtag #DecodeMEstudy at 8pm on Wednesday 12 May and help us get the world's largest study into the causes of #MECFS trending on Twitter! 5 days to go!

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

"This is big science and needs a big response from #pwME ." @sjmnotes from our Marketing Group #decodeME needs you! Find out more and sign-up at #science #spoonies

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

Great to see so many spreading the word - thank you! There are various ways to take part in #DecodeME : -Take part online -Fill out the questionnaire via proxy -Request a paper version -Arrange telephone support Please also help us reach out to #pwME that aren’t online.

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DecodeME the ME/CFS Study

@DecodeMEstudy

1 year

As we continue our data collection stage for #DecodeME , we’re really pleased to see more people visiting our website and platforms. If you have ME/CFS and want to help us change history, there’s still time to sign up as a participant... 🧵 #MECFS #PWME #DNAStudy #ResearchStudy

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

Welcome to all our new followers! 👋 We're doing the world's largest genetic study into ME/CFS. We recently expanded the study to include up to 5,000 people who develop ME/CFS *after* being ill with COVID-19. Register your interest in taking part >>

Home - DecodeME

Join the ME/CFS Biomedical Partnership to help create the world’s biggest study of causes of ME/CFS.

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

"How do you find treatments for a disease like #MECFS where nothing is known for sure about its causes?" @sjmnotes has written a great blog on how research like #DecodeMEstudy can lead to progress in diseases.

From DNA to drug development. Five success stories show the potential of DecodeME - DecodeME

How do you find treatments for a disease like ME/CFS, where nothing is known for sure about its causes? One way scientists can now look for answers is with very large DNA studies, like DecodeME. This...

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

To treat M.E/CFS we first need to understand this disease. But research into it has been badly underfunded, leaving patients neglected. 🧬🔬 Our study is the biggest DNA study into M.E./CFS. Register your interest: #WednesdayWisdom from @GeneticsUnzip

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DecodeME the ME/CFS Study

@DecodeMEstudy

8 months

DecodeME Recruitment is closing on November 15 at 5pm. Sign up and complete the questionnaire by this date to be a participant. There will be time after this to provide your saliva sample Sign up: #MECFS

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

Can you help us reach 4,000 followers ahead of the study's launch on Monday? We're so close. Please RT! #MEAwarenessHour Find images to use in your own posts at:

Great news! DecodeME opens for first participants this month. - DecodeME

Quick summary: Great news! DecodeME opens for first participants this month. Recruitment will happen in two phases. Phase 1 opens on January 31 for around 550 people. Once we’re sure everything is...

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

📺 Our Principal Investigator Chris apologises for #DecodeMEstudy launch delays in our webinar. We know #pwME have waited a long time for this study. 🙏💙 We’re excited about launching in the new year in two phases, starting Jan. #MEcfs Full webinar:

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DecodeME the ME/CFS Study

@DecodeMEstudy

1 year

Today is International Day of People with Disabilities #IDPD2022 We want to take this moment to recognise the stigma faced by people with ME and other disabilities everywhere, and acknowledge the role that research must play in creating the change needed. #MyalgicE

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

THREAD: People with lived experience of ME/CFS are at the heart of @DecodeMEstudy , the world’s largest genetic study of M.E./CFS. Patient and Public Involvement (PPI) is a hugely important part of this study. #CCInclusiveComms #MEAwarenessHour #MyalgicE #MEcfs #PwME

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

🔴The momentum around #LongCovid studies could be an opportunity to learn more about #MECFS . "The two conditions could productively be studied in tandem." Fantastic to see our #DecodeMEstudy study mentioned in @Nature . @PHOSP_COVID @Dr2NisreenAlwan

The four most urgent questions about long COVID

Nature - Scientists are starting to get insights into the lingering disorder that affects some people infected with SARS-CoV-2 — but many mysteries remain unsolved.

www.nature.com

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

Why we need the DecodeME study - new blog. A recent scientific paper, cowritten by DecodeME PI Prof Chris Ponting, explains the need for a huge genetic study on #pwME . Read our full blog on the paper on our website 👉 #mecfs #spoonies #research

Why we need ME/CFS research like DecodeME - DecodeME

A scientific paper has reviewed the available evidence about ME/CFS genetics and explains how big new DNA studies can help find causes of the disease.

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

🔵Numbers update🔵 Our latest sign-ups numbers have us at 25,643 sign-ups in total, with 19,242 coming from the UK. Thank you to all those who have shared and signed-up so far. Let’s keep going and aim for over 20,000 UK sign-ups by the end of August!

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

🔴 We're doing the world's biggest DNA study into #MEcfs . There's 2 parts to the study: a questionnaire & a spit kit. Both taken at home. Can you or someone you know take part in this groundbreaking research? #pwME Register your interest now at >>

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DecodeME the ME/CFS Study

@DecodeMEstudy

7 months

We were excited to welcome Carol Monaghan MP to visit our Human Genetics Unit to hear about our project. We shared our ambitions to increase genetics research, our progress and plans to ensure its legacy. We are still recruiting participants! Register now:

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DecodeME the ME/CFS Study

@DecodeMEstudy

1 year

We still need more participants for the world's largest study of #MECFS . If you haven't participated yet, register and fill in the questionnaire today! You could be a vital part of finding answers to this debilitating disease. #MEAwarenessHour

Take Part - DecodeME

Participant login As we have completed the questionnaire phase and moved onto the next analysis stage of the project, the participant login facility will no longer be available. If you need to update...

www.decodeme.org.uk

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

#RESEARCH NEWS: @DecodeME will be the world’s largest genetic study of #MEcfs . The current largest is @uk_biobank , analysing DNA of people with self-reported #ChronicFatigueSyndrome . Here’s what we learned from a paper it just published. #Thread #Science #ScienceNews #Genetics

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

Absolutely. Having so many sign-ups in the first few days - more than 14,000 - is amazing. Keep 'em coming! #DecodeME #science #collaboration #MECFS #pwME #spoonies #chronicillness

Science for ME online forum

@s4me_info

4 years

Have you signed up to receive updates from the @DecodeMEstudy yet? If you have, have you shared the link? Recruitment of enough participants will be a challenge and is vital to the study so please make sure you get involved. #DecodeME #pwME #MECFS

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

(🔴Content: saliva) 🧬FIRST LOOK: Spit kit 🧬 Our team spent time carefully preparing this kit and its instructions, as it has to be as easy as possible for severely-affected people to use at home. #MEcfs [Images: @isohelix . Not our patient leaflet or pack designs].

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

Sian Leary: "I want to take part in research because I want there to be treatments and a cure in my lifetime but I also don't want to see other people go through what I went through"

Sian L

@SianGotME

2 years

I was interviewed on BBC Radio Sheffield yesterday for the launch of @DecodeMEstudy , talking about the impact ME has had on my life and the hope that this research is bringing. Starts at 1:39, with Chris @CGATist from 2:44. #MyalgicE #SevereME

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DecodeME the ME/CFS Study

@DecodeMEstudy

1 year

"Please help us recruit for the project. It's a numbers game. We need tens of thousands more people." @CGATist

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

We will use online recruitment and “spit-and-post” design so #pwME who are severely affected can join the study. Family, friends and carers will be able assist them with the questionnaire and sending the saliva sample back. Sign-up now at #MECFS #science

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DecodeME the ME/CFS Study

@DecodeMEstudy

3 years

We have had a fantastic #MEawarenessMonth and have been able to share #DecodeMEstudy with thousands of more people. We want to say a big THANK YOU to every person who responded, liked or retweeted any of our posts. Our study is only possible because of each one of you!

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DecodeME the ME/CFS Study

@DecodeMEstudy

2 years

. @CGATist : Our lead scientist Chris' advice to other researchers working on diseases like ME/CFS: Listen. Be open-minded. Be prepared to have your mind changed. People with the disease are the experts in their condition, not the scientists.

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DecodeME the ME/CFS Study

@DecodeMEstudy

4 years

Let’s keep the #DecodeME sign ups going! If you’re 16 or over and have a clinical #MECFS diagnosis, sign up now. Everyone who signs up online will be notified once the participant selection process opens, which is scheduled to be in March 2021. #pwME

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DecodeME the ME/CFS Study

@DecodeMEstudy

10 months

“Take Action to be Part of the Solution” Sign up to DecodeME: Production: @MIRAME_ARTS Director: Béla Baptiste #DecodeME #MECFS #pwME

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