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#DecodeME

"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: https://rb.gy/om2il Every sample returned strengthens the results of our research."

@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE

#DecodeME
Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home

Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25000 DNA samples, incl. 5000 diagnosed with ME/ #CFS following #Covid19 infection

https://www.decodeme.org.uk/portal/

@mecfs #pwlc #LC
#MEcfs #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyE

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David Tuller DrPH: Interview about DecodeME with Prof Chris Ponting

Ponting is a geneticist. He’s also the principal investigator for #DecodeME, a genome wide association study which published findings from more than 17,000 patient questionnaires. Ponting discussed these results, why it is important to have patients involved in the research, and related issues”
23 minutes

https://youtu.be/0TS1lqFD9CA

@mecfs #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME

ME Research UK

#DecodeME is the largest ME/CFS study in the world & is ongoing but a paper has recently been published reporting initial findings from the questionnaire relating to the characteristics of the people who have taken part so far.

Read more here:
https://www.meresearch.org.uk/initial-findings-from-the-decodeme-questionnaire

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

On the #DecodeME study

This 93-second news item is on a YouTube channel with 12.2 million subscribers!

Women More Likely to Suffer From Chronic Fatigue [i.e. #CFS]: Study
https://www.youtube.com/watch?v=so9a1_5EbaE

It uses the footage from Sky News that some of us have already seen

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

From: DecodeME the ME/CFS Study

We've published our initial findings from the questionnaire data from the first 17k participants.

Read our summary blog:https://shorturl.at/wBOQ3

Or read the full article: https://shorturl.at/istzT

You can still sign up to #DecodeME: https://rb.gy/0lxxx

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

#DecodeME

Many more UK people with ME/ #CFS are needed for this large genetic study. All severity levels can take part as participation is from home

Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post

The target is 25,000 DNA samples, including 5,000 diagnosed with #MECFS following #COVID19 infection

https://www.decodeme.org.uk/portal/

@mecfs #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
#PwME @longcovid

"DecodeME STUDY - Between You and ME"

Blog about donating DNA to the DecodeME study, the largest study of ME patients that has ever done.

https://lizakarlewriter.wpcomstaging.com/2023/08/04/decodeme-study/

#MEcfs #LongCovid #Research #Gene #GWAS #DecodeME

DECODEME STUDY (UK)
https://lizakarlewriter.wordpress.com/2023/08/04/decodeme-study/

Blogpost starts:
“This week I did one of the most important things of my life. I donated a DNA sample to a new scientific study on ME/CFS. I spat into a test tube and sent it off to the lab at #DecodeME headquarters. It was a minor contribution from me, but could yield valuable information as part of a bigger study”

@mecfs #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

UK #DecodeME

Many more UK people with ME/CFS are needed for this large genetic study. All severity levels can take part as participation is from home. Questionnaires can be filled in on paper or online, and saliva samples for DNA extraction are sent by post. The target is 25,000 DNA samples, including 5,000 diagnosed with ME/CFS following Covid-19 infection.

Spread the word:
https://www.decodeme.org.uk/ways-to-share/

@mecfs #mecfs #pwme #PwMEs #cfs #cfsme #ChronicFatigueSyndrome

From DecodeME, a large genetic study of ME/CFS:

"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"

Link: https://www.decodeme.org.uk/portal/

#PwME #MECFS #LongCovid #Genetic #Research

New pre-print:

Genetic Risk Factors for Severe and Fatigue Dominant #LongCOVID and Commonalities with ME/CFS Identified by Combinatorial Analysis

Free fulltext:
https://www.medrxiv.org/content/10.1101/2023.07.13.23292611v1

Note: UK people with #MEcfs & #MEcfs+#PostCovid can take part in #DecodeMEstudy

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #DecodeME @mecfs @longcovid

(UK)
“Take Action to be Part of the Solution”

Sign up to DecodeME: https://rb.gy/c1xyw

Production: Mirame Arts
Director: Béla Baptiste

#DecodeME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME @mecfs

Good suggestion (for folks who live in the UK) to get more folks enrolled in the DecodeME research study:

"I've asked friends & family to put up DecodeME posters in public places: the local library, GP and a pharmacy. So far 6 posters have gone up- hoping to encourage others to do the same. Let's reach people who aren't on social media!" - Charlie Hillier

Link to the DecodeME FAQ page:

https://www.decodeme.org.uk/faqs/

#MEcfs #LongCovid #Research #DecodeME

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“(Contd) This would ultimately lead to better understanding and perhaps even development of treatments, and may also help to establish subtypes. Home page - DecodeME https://www.decodeme.org.uk “

#PwME #mecfs #decodeme #MyalgicEncephalomyelitis #pwmes #ChronicFatigueSyndrome #cfs #cfsme #pwme
@mecfs

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“I think #DecodeME is a fantastic example of patients and scientists collaborating to enable biomedical research into ME happen at scale, I am very hopeful that it will generate some promising results that point towards which pathways may be involved in this disease.​“

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme

I forgot to add that Long Covid patients in the UK who have an ME/CFS diagnosis can participate in the DecodeME research.

All study participants can participate from home.

Here's a link explaining how to sign-up:

https://www.decodeme.org.uk/faqs/how-to-sign-up-for-decodeme/

And here's the FAQ page with more details:

https://www.decodeme.org.uk/faqs/

#LongCovid #MEcfs #Research #DecodeME

You can read more about the DecodeME research study on the Science for ME forum:

https://www.s4me.info/threads/uk-decodeme-recruitment-open-online-questionnaire-postal-spit-kit-12pm-12th-sept-2022.29463/page-25#post-480244

➡️ Note: Due to mastodon bug the link preview shown below goes to top of thread - the link posted above is correct

#MEcfs #Research #DecodeME #Science4ME

From DecodeME:

"Inviting More Participants to Donate DNA"

"In the past few months, we have been working to widen participation in the DNA stage without affecting the validity of our genetic analysis
…
This is exciting because it means we can collect more DNA data to help us find the genetic causes of ME/CFS. Also, our DNA cohort will better reflect the breadth of symptoms and experience within the ME/CFS community."

https://www.decodeme.org.uk/inviting-more-participants-to-donate-dna/

#MEcfs #DecodeME #Research

From: Decode ME Study

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:

https://rb.gy/y2anp

There is still time to sign up to #DecodeME: https://rb.gy/o10l2

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing @mecfs