From the moderation team
This thread has been created to provide a way for members to be alerted when a DecodeME preprint is posted. To be alerted, 'watch' the thread (by clicking 'watch thread' at the top right of the thread). You can choose to receive an email as an alert.
Posts will be made...
Jennie Jacques speaks with @Chris Ponting on DecodeME and the recent Biobank preprint Replicated blood-based biomarkers for Myalgic Encephalomyelitis not explicable by inactivity
We have existing threads for general discussion of DecodeME, UK: DecodeME updates, was recruitment thread., and the first publication from the study, Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al
What I want to highlight with this thread is...
Given the possible importance of the DecodeME data I have opened this thread for users that might have ideas for possible projects with this data.
I can’t claim to know what projects would even be possible or sensible, especially since I had never heard of PrecisionLife of iciHHV-6 before the...
This is a study making use of samples collected by DecodeME, where participants agreed that samples could be shared with other researchers.
Summary - REQ001
Human herpesvirus 6A (HHV-6A) and 6B (HHV-6B) are two, closely related viruses that infect humans. We often refer to them collectively...
I felt like writing about this.
In my opinion ME/CFS is probably a label for several different poorly understood illnesses that happen to share some characteristics and which do not yet have their own name. We might call them subtypes of ME/CFS. Then, in a ME/CFS cohort there is probably also a...
http://journals.ed.ac.uk/eor/article/view/8125
Data Dashboards
The advantages of having access to data insights when conducting large scale citizen science 'direct to public' research projects
David Perry University of Edinburgh
ABSTRACT
DecodeME is a research project that aims to find the...
Abstract
Background: People with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) daily experience core symptoms of post-exertional malaise, unrefreshing sleep, and cognitive impairment or brain fog. Despite numbering 0.2-0.4% of the population, no laboratory test is available for...
Wasn't sure where to post this. Does anyone know if there is research into sleeping patterns and changes in symptom severity during the course of the day?
Here's my general sleep and symptom profile:
Main sleep: 4am - 2pm
Symptoms on waking: Paralysis, whole body stiffness, restricted movement...
Abstract
Background
Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, long-term condition characterised by post-exertional malaise, often with fatigue that is not significantly relieved by rest. ME/CFS has no confirmed diagnostic test or effective treatment and we lack...
I hope the Mods won't mind me creating a thread for this blog, which looks at why genetic studies are so important. Posted for British Science Week.
Decades on, and with over $100m spent on research (it should have been much more), we still don't know for sure any causes of ME/CFS. Genetic...
Split from The course of the illness for ME patients in Norway, 2021, Schei and Angelsen
The potential effect of sample biases on DecodeME
Summary: there is some evidence that this could be a problem, but is not clear how big a problem and it may be possible to adjust for possible biases...
The amazing DecodeME ME/CFS DNA project that just got funded, is holding a webinar on 6 July.
Details to be announced later, presumably - this info is from emails that went out to people who registered for updates about the study.
Moderator note:
Please note: at this point only people from the UK will be eligible to participate in the study.
However people from anywhere, with or without ME/CFS, can register their interest in receiving updates about the study. People who register will receive information about...
https://www.ed.ac.uk/inflammation-research/postgraduate-training/phd-programme/research-projects
The M.E. project is one of several advertised on this page.
Mentions the GWAS study....
Sign up! Your support could help win funding for a game-changing ME/CFS study
January 8, 2020 Simon McGrath Comments 0 Comment
Researchers and patients are about to submit an application to the UK’s two big medical research funders for a 20,000-patient genetic study. The team want people...
This post and the following ones have been moved from this thread.
I may well start a new thread for the GWAS application (and hopefully funded study) but for the moment I'll keep updates here.
Draft website goes live and feedback sought on recruitment plan.
So the draft GWAS project website...
Researchers propose deep trawl of DNA to help uncover the causes of ME/CFS
Analysing the DNA of thousands of patients can help to uncover the genetic roots of diseases and shed light on the underlying biological mechanisms. This can reveal targets for drug development.
A new and very different...
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