Sally Callow reports on the DecodeME study using DNA to try to find out more about M.E/CFS. Sally suffers from M.E herself, is participating in the study, and is also the founder of Stripy Lightbulb CIC and ME Foggy Dog, which offer training and aim to raise awareness about M.E.
Did you know that as an M.E/C.F.S patient you have the opportunity to help with ground-breaking DNA research into M.E/C.F.S?
Details of the DecodeME study have been circulated widely amongst patients on social media and within online support groups over the past month or so but this article is an attempt to reach outside of that ‘bubble’. To be clear, I have no links to this study other than being a participant and having a keen interest due to being a patient advocate. Thank you to Star & Crescent for giving me this opportunity.
The DecodeME website states:
‘We have secured funding for a very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it. The study should help us understand the disease and ultimately find treatments.’
Decode ME need 20,000 participants from the UK to take part. Ideally, they require 40,000 patients to volunteer to be sure that 20,000 participants remain at the end of the selection process. There are 250,000 patients with M.E/C.F.S in the UK, so we need to reach as many as possible to make sure the sign-up target is met. The study is launching in early 2021, the sooner the sign-up target is met the sooner the research team can get cracking!
This study is for anyone with a clinical diagnosis of M.E/C.F.S from all levels of the spectrum: from ‘mild’ M.E/C.F.S patients who are still able to work, to those who have severe M.E/C.F.S and are house- or bed-bound and reliant on carers or family members for personal care.
If you meet the criteria laid out below by Sonya Chowdhury, then you are eligible for this study.
I asked Sonya to contribute to this article, as the chair of the DecodeME Patient and Public Involvement (PPI) Steering Group, co-investigator (PPI) on the Management Group, founding charity member of the UK CFS/ME Research Collaborative (CMRC) and CEO of Action for M.E.
Ms Chowdhury said:
‘To take part, people must have a diagnosis of ME/CFS, be over 16 years old and live in the UK. Potential participants will be required to complete a questionnaire designed and tested to ensure we only include people who meet two specific ME/CFS criteria – the Institute of Medicine (2015) or the Canadian Consensus Criteria (2003). Both of these criteria require the mandatory symptom of post-exertional malaise (PEM) as most people with ME/CFS, patient organisations and biomedical researchers regard it as a defining symptom of the disease. We have to follow these criteria to the letter to ensure high quality science and this unfortunately means that those who are fully recovered will not be able to participate.
We also know that not everyone with a diagnosis of ME/CFS will meet these specific criteria; this does not mean that you do not have ME/CFS. It just means that you don’t meet the criteria for this study. However, your data can still be used, with your consent, for other research studies, so your time, data and energy will still have scientific value!
If you have signed up for updates, we will let you know as soon as we are ready to start recruiting people into the study and send you a link so that you can provide the necessary consent and complete the questionnaire, and we hope that this will be in March 2021.’
A ‘clinical diagnosis’ here simply means that you have been diagnosed as having M.E or C.F.S by your GP. You do not need to have seen one of the rare M.E/C.F.S consultants or ‘specialists’ that most patients never get to experience.
The data collection process has been deliberately kept as simple as possible to ensure that the most severely affected patients are able to participate. Historically, very severe and severe patients have felt excluded from studies elsewhere because of the associated challenges, such as travelling to clinics for tests. Full details of the study can be found here but it is basically a spit and post process. The researchers need a sample of saliva to test DNA. Initially, there is a brief sign-up sheet online but again, it has been kept as streamlined as possible.
Want to help but do not have M.E/C.F.S? You can help by spreading the word about this largest ever biomedical study into the illness among your own networks.
Find out about the Decode ME study here.
ME Foggy Dog is a social enterprise that aims to raise awareness about M.E and raises funds for M.E./C.F.S. research. Follow Foggy on Facebook and Twitter. Stripy Lightbulb CIC is a social enterprise that offers e-learning about M.E./C.F.S. to professionals (healthcare, education, business) who have a duty of care over M.E./C.F.S. patients.
Image used under a CC license from Public Domain Pictures.