Closed UK: DecodeME updates, was recruitment thread.

well done DecodeME team!

Also, just to note in case it's helpful for anyone:

- I had previously locked myself out of my account by pressing the 'back' button on my browser (I know they specifically said not too, my concentration lapsed!) I took Andy's advice and emailed the team about it earlier in the week. They got back to me with a work-around so I've now been able to complete the questionnaire. So it's worth emailing if you have any issues! (Although I gather it's taking a while for them to respond currently as email volume is high at the mo).

 

Nicely worded.
I hope that will answer the questions of most.

 

I completed the study today and wasn't chosen to take part. It is quite disappointing on an emotional level even if intellectually I entirely agree with all that's been said.

I guess it's just a consequence of years of uncertainty and gaslighting by docs.

But other than that I am hopeful about the study and very grateful for the work that's being done on our behalf.

 

Yea I was really impressed by the statement @Simon M
Typical of the professionalism they have exhibited.

 

A reminder that the Sheffield ME and Fibromyalgia Group are hosting Chris Ponting who will talk about DecodeME, prior to their AGM, Oct 6, 2022, 2:00 PM

Event details and to register, https://us02web.zoom.us/meeting/register/tZAvfu6urzgiGNL9K-MIP_lbJy-296bYyBrE

 

Just because it appeared on my timeline, here is the Facebook ad promoting the study.

 

Has anyone received their spit kit yet? I'm wondering when they are being sent out. Also, wondering if they fit through the letterbox or if you need to be in to receive it?

 

First batch is going out early next week. The strikes by the postal workers today and tomorrow may mean a short delay for delivery though.

We've been advised that the size of the packing used should fit in standard sized letterboxes.

 

Thanks Andy.

 

Latest quick blog, "DecodeME Questionnaire – Shining a light on the ME/CFS community", https://www.decodeme.org.uk/decodeme-questionnaire-shining-a-light-on-the-me-cfs-community/

 

We sent out our first reminder email today. This went to those who are on our contact list who, best we can tell, have not yet signed up to take part in the study.

 

i got the reminder, i am signed up to take part but asked for the questionnaire to be sent by post. i find reading on paper soooo much easier,

I have just posted it back

 

It seems my DNA is not worthy.

I, could have told them that, without a questionnaire

(I'm assuming that my comorbidities disqualified me).

 

But your answers to the questionnaire still count. Thank you for taking part.

 

For those asked to donate a sample, spit kits are now being sent out.

"#DecodeME participants also asked for a DNA sample will receive a spit kit in the post soon. It may take some time for the many kits to be sent out. Don’t worry as they are on their way. If you have received yours, share your experience: #SpitToDecodeME"

Code:

https://www.facebook.com/watch?v=1287816878633735

 

I hope that ME-fog-proof instructions are also included in the package.

 

Well, both the Twitter and Facebook posts linked in my post above have a video demonstration of what to do. Also this small selection of feedback on social media seems to suggest that we haven't done too badly in making the instructions as clear as possible.

"Received and returned my DecodeME spit kit today. Very straightforward with clear instructions."
and
"Mine also came today. Instructions are indeed very clear, and it's very easy to do."

 

I got my kit yesterday. I meant to take the sample and send it off whilst I was on my way to swimming this morning, but the box got hidden under a book and therefore no longer existed as far as what passes for my mind was concerned. Tomorrow, hopefully.

ETA: added word "send"

 

Thought this would be useful to post here.

With spit kits being sent out to donors some have been asking if a sample being delayed in the post would be an issue.

The simple answer is that the likely delay caused by a postal strike is very unlikely to cause any issue. The storage tube contains a stabilizer which should see your sample reach us with no problems at all.

And if there is, the quality control process should flag it and we would simply ask you for a new sample.

 

A post not about recruitment.

Chris, Diana (our project manager) and I met with Theo Richardson-Gool, from the MRC's Integrative Epidemiology Unit at the University of Bristol to discuss how DecodeME have involved the patient voice from the start of the project.

Theo assured us that he has used the only screenshot that he took....