our CEO and Co-Chair of the is a signatory to the letter.
Read the full letter here: ow.ly/jrLh50Lf6Fg
Photo: © WHO / Pierre Albouy
Sonya Chowdhury
@SonyaChowdhury
Chief Executive, and Board Director, . All tweets and views expressed are personal.
Sonya Chowdhury’s Tweets
Quote Tweet
Great to see the #MillionsMissing Scotland demonstration featured on @STVNews tonight, alongside our friends at the @DecodeMEstudy and a #pwME sharing their story.
Brilliant to get national news talking about #MyalgicE
Coverage starts at 1:18
player.stv.tv/episode/4cur/s
1
12
47
Great to see the #MillionsMissing Scotland demonstration featured on tonight, alongside our friends at the and a #pwME sharing their story.
Brilliant to get national news talking about #MyalgicE 👏
Coverage starts at 1:18
📺
1
7
28
Enjoyed the sun while I cheered the runners Including my eldest! Well done everyone and thanks for your support
2
1
28
Show this thread
Thanks so much to all you lovely people for helping us reach more people.
We already have the world's largest dataset of people with #MyalgicEncephaloymelitis BUT WE STILL NEED MORE!
Please register to take part bit.ly/3CxeEHb
2
49
75
read image description
ALT
read image description
ALT
read image description
ALT
4
50
98
1
12
68
Brilliant film!
Quote Tweet
Helping to recruit 25,000 people to the world's largest #MyalgicEncephalomyelitis DNA study. Thank you @NowYouSeeM_E for this great film! If you haven't already, please take part: decodeme.org.uk/portal/
You can also support by helping us by spreading the word!
2
5
Quote Tweet
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
1
7
54
Thank you for helping us reach more people. We need as much help as possible to get there as soon as possible
Quote Tweet
A rallying call for help to anyone in U.K. diagnosed with #MECFS including as a result of #longcovid twitter.com/DecodeMEstudy/…
1
14
46
Thanks for supporting Brilliant fundraising support Thank you too!
Quote Tweet
A huge thank you to the @Rotary Club of #Scunthorpe (@RCofScunthorpe) for kindly donating £200 towards my fundraising for @actionforme which now stands at £12,500 - the majority of which will help accelerate research into #MyalgicEncephalomyelitis #MECFS
1
1
2
Thank you so much for all your support. We are receiving lots of emails/calls/questions. We appreciate your patience as we work through them. Please help spread the word as we still need more people to participate in all aspects of the study study.decodeme.org.uk/accounts/signu
22
45
1
3
24
#MEAction UK has announced a new date for #MillionsMissing London 2022!
#MillionsMissing is an annual global event run by to raise awareness of the millions of people missing from their lives due to #ME & to ask for better treatment, research & investment in #MECFS.
read image description
ALT
read image description
ALT
read image description
ALT
2
25
49
Show this thread
Quote Tweet
read image description
ALT
2
7
11
So excited - from is giving a zoom talk and Q&A on the study tomorrow (THU) at 2pm. Free & open to everyone wherever you are! Spread the word 💙💜 bit.ly/SMEFG-DecodeME
If you have #MECFS don't forget to sign up for the study🧬 decodeme.org.uk
read image description
ALT
29
42
#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
0:52
1.4K views
1
33
134
Show this thread
So humbling to be in the grandstand to cheer our runners over the finish line. All running in recognition of someone they know with #MyalgicEncephalomyelitis We even got 3 mentions on the tv commentary (think it was the over exuberant shouting and excitement!)
4
11
91
Fantastic event yesterday hosted by . Big congratulations to for winning the CEO award and everyone else who was nominated.
Thank you to everyone at for making this job so special.
Big smile on my face below 😊
2
1
13
Replying to
Thanks for sharing the reasoning. I think it highlights how seriously the team is taking the study. It's hard because everyone wants to be part of it but we have to think of the long view/outcomes and stick together.
1
15
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
Quote Tweet
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
6
17
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!
Quote Tweet
read image description
ALT
read image description
ALT
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
4
9
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.org.uk/participation-
#DecodeME #MECFS #DecodeMEstudy
16
56
150
considered all severities. I'm on the Communications team and have had severe M.E. so am sorry this information didn't reach you. It is disappointing to not be chosen for part 2, but I cannot stress enough how vital your questionnaire entries are.
1
13
I'm sure you'll understand that sharing the details of the inclusion/exclusion criteria could well affect how people yet to take part answer the questionnaire. I'm sorry you weren't aware that not everyone would be eligible. We worked hard on the communications we put out and...
1
3
17
Really great to hear talk about how Patient & Public Involvement will be at the heart of any future research 💙
1
2
13
Our Healthcare Services Director is sharing our plans to increase our holistic approach, to offer 100% bursaries who need them and develop a new nursing service
3
4
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
read image description
ALT
read image description
ALT
5
83
189
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.
0:24
4K views
21
44
175
Show this thread
The design separates 20k #pwME (from before COVID-19) from 5k #pwME diagnosed after COVID-19 infection. Keeping them apart ensures we don't muddy the waters & allow us to ask whether ME/CFS & LC are same/different. #spreadtheword
1
3
17
Take part in DecodeME, the world’s biggest ME/CFS study.
The first step is to take the DecodeME questionnaire and then you may also be asked to provide a saliva sample. Both can be done from your home.
Your experience matters.
You can take part at decodeme.org.uk/portal.
11
17
This is brilliant news - huge thanks to all who have signed up so far. You can get involved at decodeme.org.uk/portal
#DecodeME #MECFS #pwME #decodemestudy
Quote Tweet
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
read image description
ALT
read image description
ALT
7
18
From and Andy Devereux-Cooke’s presentation on Patient and Public Involvement, from Wed's first #actionforme #MECFS genetics research summit. Hear more at our AGM, 4pm, Tue 20 Sep, all welcome. Register now at ow.ly/csWc50KLbrA
1:36
329 views
4
19
What a week! And so overwhelmed by the amazing response from the amazing #MEcfs community to Huge thank you from us all
Quote Tweet
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
read image description
ALT
read image description
ALT
3
9
44
Show this thread
This is brilliant - great from the people with ME on what it does to your life, Chris Ponting on the study & on taking #ME seriously. Please watch.
1/2
Quote Tweet
#DecodeME on @BBCNews #ReportingScotland earlier this afternoon
Timestamp: 4:40
bbc.co.uk/iplayer/episod
1
7
14
Show this thread

















