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Sonya Chowdhury
@SonyaChowdhury
Chief Executive, and Board Director, . All tweets and views expressed are personal.
Bathactionforme.org.ukJoined June 2011

Sonya Chowdhury’s Tweets

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.
What taking part looks like. Sign up on our website: www.decodeme.org.uk or contact the team to request a paper version of the questionnaire
Complete the questionnaire: 
Take the DecodeME questionnaire which will ask you about your symptoms and experience of ME/CFS

Some participants will also be asked to send a saliva sample.

Provide a saliva sample: If you are also asked to provide DNA we'll send you a 'spit kit' in the post.

This is when you'll provide your saliva sample by spitting into the tube provided.
Post your sample back to us: Follow the instructions to package up your sample and post it back to us using the pre-paid parcel.

You can post it via any postbox.

Your data and your DNA: When your sample reaches us, we'll extract your DNA and study it. 

We'll have also collected invaluable questionnaire data from tens of thousands of people with ME/CFS.

Visit our website for more info: www.decodeme.org.uk
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This is a big move forward. Millions of #MECFS patients have been waiting for years and/or decades to see the establishment of a working dataset to begin the process of decoding #MECFS. This will open a path for greater funding for the many research projects already underway.
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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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Looking forward to this talk with Chris about the at 2pm today (Thurs 6th Oct). Great opportunity to find out more about the study and how things are going since we opened recruitment. Still time to register to join us. #pwme #MyalgicE
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🧬Join us next week for a talk from principal investigator of Decode ME study!🧬 WHEN: Thursday 6th October, 2pm WHO: @CGATist of @DecodeMEstudy HOW: bit.ly/SMEFG-DecodeME FREE & OPEN TO ALL! Followed by our AGM, 3.30pm - drop in/out #MECFS #MyalgicEncephalomyelitis #pwME
Image from Sheffield ME and Fibromyalgia Group. Graphics in blue and white. Top white: photo of Professor Chris Ponting. Text: Thursday 6th Oct 2022, 2pm Register now on: bit.ly/SMEFG-DecodeME-AGM Or watch live on our Facebook page. On Zoom and livestreamed to Facebook Free - Open to all. DecodeME: talk and Q&A The world's largest genetic ME/CFS study. with Professor Chris Ponting DecodeME Principal Investigator, MRC Human Genetics Unit, University of Edinburgh. Followed by AGM. Hosted by Sheffield ME and Fibromyalgia Group
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Great interviewer & interviewee 💥 💙 I am an ambassador for helping to LAUCH this incredible much needed study #mecfs #LongCovid thanks for sharing; articulate, accurate & an easy listen; * m.youtube.com/watch?v=Npk0T0
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Professor Chris Ponting (@CGATist) on the Today programme - BBC Radio 4 this morning discussing #MECFS and the new @DecodeMEstudy that was launched yesterday. Anyone in UK diagnosed with ME/CFS (>16yo) - including ME triggered by SARS-CoV-2 can sign up youtu.be/Npk0T0UPmSc
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Sign up to & start solving the #mecfs puzzle today 🧩💥 * LIVE interview here ⬇️ * m.youtube.com/watch?v=iRlAPT * If Queen Judith was ruling she would 💯prioritise the #MillionsMissing 😉 LET’S DO THIS!
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DecodeME logo. There has been a delay in notifying participants who have submitted their questionnaire if we will also be asking them for a DNA sample. If you have already completed your questionnaire, you will find out via email early next week. So keep an eye out on your inboxes.
There has been a delay in notifying participants who have submitted their questionnaire if we will also be asking them for a DNA sample. If you have already completed your questionnaire, you will find out via email early next week. So keep an eye out on your inboxes.
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.org.uk/week-one-of-la #DecodeME #MECFS #pwME #decodemestudy
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It’s hugely valuable to have the wealth of data from the questionnaires and you will still be a part of the study if you complete one. We tried really hard to make people aware in advance that not all will be invited to provide a sample and I’m sorry that this didn’t reach you
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