fragmented.ME …
news ...,  research ...

important DecodeME update #1 …

decodeME are doing a series of information posts in the lead up to the start of the DecodeME study. They are encouraging us to share them as much as we can.

Therefore, I will share them each time they are posted …. exactly as they are originally written by,

DecodeMe …

 fragmented.ME xXx

Blog article to follow is Copyright © DecodeME (2021).
Updated October 2021. From 

Important update & first look at ‘spit kit’

Important update: DecodeME will launch a few weeks later than planned.

We know how important this study is to you and everyone in the M.E./CFS community, so we need to make sure everything is 100% right before launching for the 27,000+ people already interested in taking part.

Data protection is one of the things we must get right. Professionals are further testing the study’s web portal and its security, which will take a little more time than expected.

Keeping your health information safe is essential, and we know it’s really important to you too from your messages and webinar questions.

We do not yet have an exact date for the launch. We will, of course, update you when we’re ready. You won’t miss it as we’ll email you (if you’ve registered your interest) and post on social media.

Doing the world’s biggest genetic study of M.E./CFS takes time. We appreciate your patience and enthusiasm for the study. We know even a few weeks’ wait feels like such a long time when people with M.E./CFS have waited so long for a study like this.

Right now, the team (including patients and their representatives) continues to work really hard. So much is happening behind the scenes – so we wanted to share a couple of things we are excited about.

Content warning: saliva.

EXCLUSIVE: Your first look at the ‘spit kit’

Small funnel and test tube with leaflet

These are taken from a video we’re preparing on how to use the kit. (There will also be written and audio instructions.)

The 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. We’re still fine tuning it, so it may change.

BIG MILESTONE: We received ethics approval, with the Research Ethics Committee giving a ‘favourable opinion’ of our research. This means the team demonstrated our research will be done in a responsible and ethical way – something that’s so important for the M.E./CFS community.

We will be in touch very soon with a more detailed update. Have questions? You can email us, contact us via our social media pages, or save them for our upcoming webinar (more details soon!)

Here are 3 things you can do to help before the study launches:
1) Watch our latest webinar.
2) Read our blogs and FAQs for more information on the study.
3) Spread the word: become a social media ambassador, or get information for your support group.

Thanks so much for your patience. We can’t do this study without you.

Sonya Chowdhury.
Chair of DecodeME’s Management Group.

First, we need to find 20,000 people to take part. If you would like to be one of them, please sign up and you can be first in line when we start recruiting in the autumn.

… Sign Up Here …

 © decodeME

My birth name is Denise, but I’m know as Bella to those who love me. I have a first class honours degree in education & psychology and a strong passion to keep learning and educating others ... I have severe ME/CFS and lots of other chronic illnesses and I started this blog as an expansion to my instagram page, where I advocate for chronic illness. I am married and have two grown up boys, or should I say young men. I have three gorgeous grandchildren, one boy and two girls. And despite being chronically sick and housebound I am mostly happy. 🥰