"86% of DecodeME participants consented to sharing their de-identified data with other researchers and 95% of participants consented to being recontacted for new research projects"
" #DecodeME is offering data access to other approved researchers until the end of the study in August 2025 in the hope that it will help accelerate research towards possible diagnostic tests and treatments for ME/CFS."
@tomkindlon@mecfs#DecodeME is so important. I am so grateful I was able to contribute to a study that actually took a medical sample from me instead of only doing a survey asking about how I feel.
I have given so much information about how I feel and it's so rarely believed. I feel like if it were they wouldn't keep asking.
For example, the shower seat. I've had to use one of those since age 29 (helps decrease symptoms and reduces risk of fainting). I'm in my 60s now so that's more than 30 years.
I do feel lucky that I was able to find good doctors. I had to go through a lot of bad doctors to find them, though.
And I'm always happy to hear more about #DecodeME ❤️
One of the slides shows the participation rates in #DecodeME. I'm guessing signups includes people like me who signed up but were ineligible because we didn't live in the UK
Attention: just 2 weeks left to return your spit kit. 🙏
A few months ago there were thousands still out there. Because of the number of genes, the bigger the sample size the more informative the study so the more that are returned the better.
"The patient voice is at the centre of everything that happens in this ME/CFS research study [DecodeME], so the community has influence in what is decided."
"There has been no other study of this size done on myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS)"
The patient voice is at the centre of everything that happens in this ME/CFS research study, #DecodeME, so the community has influence in what is decided.
Dr. Chris Ponting talked about the DecodeME study in a recent NIH webinar titled "ME/CFS Genetics/Genomics." This is part of a series of NIH webinars about ME/CFS research.
Dr. Ponting's talk runs from 11:57 - 49:35 in this video:
This extract briefly explains the importance of the study & highlights how more samples are still needed. Please try to use reach all your contacts in whatever way possible to encourage them to sign up
It shows they have less than 16,000 DNA samples (they have funding for 25,000). Hopefully the ME community will make a big effort to reach more people in next 8 weeks.
"4,000 spit kits have been sent out and not yet returned. If you still have yours, please try to return it soon. We understand producing a sample can be tricky, see our FAQ for advice: https://rb.gy/om2il Every sample returned strengthens the results of our research."
“I think #DecodeME is a fantastic example of patients and scientists collaborating to enable biomedical research into ME happen at scale, I am very hopeful that it will generate some promising results that point towards which pathways may be involved in this disease.“
“(Contd) This would ultimately lead to better understanding and perhaps even development of treatments, and may also help to establish subtypes. Home page - DecodeME https://www.decodeme.org.uk “
UK DecodeME study still recruiting participants - needs more! (www.decodeme.org.uk)
Join the ME/CFS Biomedical Partnership to help create the world’s biggest study of causes of ME/CFS.