CFS/ME research study

[Tiggerlostherbounce]

hi, I hope everyone is doing okay today? 😘

Just wanted to share this in case it helps anyone?

I was referred to this study when diagnosed with cfs/me and they send you a spit pack to analyse your dna for research.

DecodeME’s Investigator Professor Chris Ponting recently spoke about the study and the importance of ME/CFS research in Thomas McCann’s documentary ‘Living With ME’. You can watch the full documentary on YouTube. (Trigger warning: the full documentary contains conversations on suicide).

I did it to see if I could learn anything from my dna etc and am awaiting the results, but noticed that they are struggling to find volunteers. I have attached a poster and some links if anyone is interested?

I thought this may be one of the best places to mention it and any help to get to the bottom of things is a plus

Info from DecodeMe research:

We recently became able to invite more participants to donate their DNA to the study, you can read more about this change in our blog post: Inviting More Participants to Donate DNA.

4uaoo.r.a.d.sendibm1.com/mk...

Initial findings from the DecodeME Questionnaire Data Published.

4uaoo.r.a.d.sendibm1.com/mk...

Having analysed the questionnaire data from the first 17,000 participants, our findings, have been published by NIHR Open Research. You can read the summary of the findings on our blog.

if you haven’t signed up as a participant in the DecodeME study, but would like to do so, please visit

decodeme.org.uk/portal

Let’s hope we can all benefit from this study?

🤞👍

[Angelicscripts6]

I've also done Dna spit test & read so far the data Seems they need more patients with confirmed diagnosis of CFS/ME for research ...since you've posted links to study I'll leave it at that.

[Fibrooh]

I would advise checking the small print to see if they have given themselves the right to sell participants DNA information.

[Sugarhobbit]

Hi

I have also taken part in the study and was asked to send a spit sample. Unfortunately with it being a study etc you don't actually get to know your personal results from the DNA etc. I know this to be true as I emailed them to ask once they informed me that they had received my sample.

Sugarhobbit