Closed UK: DecodeME updates, was recruitment thread.

Chris and Sian will be speaking to Edinburgh Medical School on Instagram Live on Weds 18th, 11:30am BST.

 

The 12th Oct webinar recording and transcript is now available, https://www.decodeme.org.uk/webinar...ript-initial-questionnaire-analysis-decodeme/

 

I hope the picture of a mouse/rat is not indicative that drugs will be tested on them. The results would be highly irrelevant to humans, especially as we know so little about ME, so there is no way to 'make' a representative animal to test drugs on.

 

At this point, without any findings, we can't know whether they will or won't be tested on animal models, or whether even the animal model would be relevant or not. Even if we do find something that suggests it might be worthwhile, in my opinion it is unlikely that any of the current DecodeME team will be in any position to influence the decision.

 

I've just noticed an error in the written report - it says "Females are more likely to experience...hyperthyroidism" whilst point 4 in the Initial Questionnaire Results above refers to hypothyroidism.

 

Thank you for highlighting this. Watching the video it seems that Chris unfortunately did say hyperthyroidism, so the transcript is correct in that sense, but obviously what he should have said is, as you point out, hypothyroidism - I've let the team know and asked them to amend the transcript appropriately.

 

Transcript has now been corrected.

 

For those who can't see tweets this is a DecodeME post sharing the video below.

"In this video I participated in the Decode ME study by supplying my DNA sample through the spit kit and discussed the aims, values and process of the research with a member of the Decode ME team and fellow ME/CFS patient Anna (@teapartyform.e on Instagram). This study is a very important first step into the research of the widely misunderstood illness of ME/CFS which has the potential to change opinions and open doors to further research in the future!!"

 

Brilliant video, Elinor and Anna did a great job.

 

Decode ME Study

We joined Edinburgh Medical School to talk about DecodeME and the importance of involving people with lived experience in scientific research https://shorturl.at/buvFH. To contribute YOUR lived experience to our study, complete our questionnaire before 15th Nov 5pm. https://shorturl.at/fhlz1 #DecodeME

 

Recruitment closes in 2 weeks today
I'm using it as another excuse to plug the study on my social media accounts

e.g.

 

Just a note on the use of the wording "well short". Some might take that to mean that we will not be successful if we don't recruit 25k DNA donors, and I wanted to reinforce the message that we already have enough DNA samples in order to run a GWAS, and if we receive samples back from all 20k DNA donors then we will have a cohort eight times larger than the previously largest GWAS of ME/CFS.

 

DecodeME social media posts - two weeks left to sign up and complete the questionnaire.

Facebook:

Code:

https://www.facebook.com/photo?fbid=856076676520427&set=a.128908609237241

 

OK. Some subtlety can be lost in a social media post where there is a short character limit. I also want to motivate people to act and either sign up or encourage others to and not sit on their laurels.

 

Indeed, and I and the rest of the DecodeME team appreciate all of the support that you have given our recruitment efforts.

 

@Andy Is there an upper age limit please? Everything I’ve seen just says ‘over 16’.

A member in my local group is implying that she wasn’t accepted because she is in her 70’s and I didn’t think this was correct.

 

Thanks for checking. No, there is no upper limit; if I remember correctly we have at least one participant in their 90s.

 

MEActionMaryland did a few images of their own