Written by Liz Hobbs.
Disclaimer: this is a personal blog by a BuDS member. The views expressed are personal and don’t necessarily represent those of BuDS or our Trustees.
A few months back it was Chronic Fatigue Awareness Day. I really wanted to write a blog about it, but at the time my own chronic fatigue symptoms were so bad that I didn’t have the energy, focus or ability to do anything about it. I promised myself that at some point I would write something. This isn’t quite the blog that I was going to write – still not enough health to do that, unfortunately. It was going to be all about how CFS has affected my life and how it impacts so many people in so many ways. However instead, having just attended a webinar, on 16th November, I’m going to ask you a very important question:
Have you heard about the DecodeME project?
It’s the world’s largest study into finding out what the causes of myalgic encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) are. Anyone with a diagnosis of either condition, who is 16 or over and who lives in the UK, can sign up to take part and they are looking to get as many people involved as possible. So far, in just about 2½ months, over 16,000 people have completed the DecodeME on-line survey! From that group people are selected to take part in a DNA screening too.
Not everyone can be selected for the DNA screening (there just isn’t the funding for that), but the survey is already giving valuable insights into what it is like to live with ME/CFS. For example, from the people who have already responded they have seen that over 90% experience brain fog and about 85% of people affected by the conditions are female. They have already started passing on the information they are finding out to the relevant medical authorities too. That means that the 16,000 of us who have already taken part are already making a difference. You can help make a difference too!
They aim to get to the point where at least 25,000 people have completed the DNA sample stage. So that means they need many, many more thousands of participants to complete the survey to be able to select enough people fitting the criteria to do the sample.
The people running the project are very keen to explain that it is not their project, it is our project – it belongs to every single person who suffers from the debilitating effects and impacts that CFS/ME have on our daily lives.
Please, if you have a diagnosis of ME/CFS, live in the UK and are 16 or over, go and take a look at the website https://www.decodeme.org.uk. If you don’t have the condition, but know someone who does, tell them about the study so they can sign up. If you don’t know anyone, well, please just share this with as many people as possible. The more people who know, the more people will join the project and the more likely it is that they can find out the cause/s and hopefully find treatments that actually work! Please help to make a difference but spreading the word about the DecodeME project.