Closed UK: DecodeME updates, was recruitment thread.

Yes, that will be really helpful.

I can only guess that they needed a 'filler' health related story and flicked back through the press releases that they have previously received, as far as I know the team weren't expecting this article.

 

Don't think I shared this yet. DecodeME in, and on the cover of, Enable magazine.

Link to full issue of the magazine, https://issuu.com/dcpublishing/docs/en_nd22

Or I have taken screenshots of the article and the cover, click on the thumbnails to view.

 

Confirmation of the request to wait 4 weeks before chasing up samples sent back (in the image in the Twitter post).

"Thank you to all who have taken part so far! If you have already posted your sample back but have not received confirmation of its arrival at the lab - there are delays due to Royal Mail strikes and processing delays at the lab - don't worry, things are taking a bit longer."

 

To add some additional context to the issues that DecodeME is seeing with the Royal Mail. I ordered a new mobile phone sim card on the 31st Oct. It has just arrived in the post today (18th Nov), even though the printed postage details on the envelope show it was posted on the 1st Nov, 1st class. So 2.5 weeks for something designed to be dealt with as normal, next day, post.

 

How soon would you expect Decode ME to reply to an email? I sent mine enquiring about the lack of response to my sending my sample, on the 14th.

 

My sample was posted on 17th Oct and I've heard nothing from Decode so I remembered that I had a tracking number on my receipt from the post office.

For those who haven't yet posted their sample and can get to a post office, you may want to consider tracked posting. Decode ME provide a postage label and you can hand over the labelled package and they will give you a receipt with the tracking number on, free of charge.

Alternatively you can keep a record of the tracking number from the postage label and track it yourself. It might relieve some pressure on the receiving office if we can check on receipt via the post office.

Mine was posted via the post office (thanks Mr B) and tracking it yesterday (I hadn't looked before) recorded its delivery as 19th Oct. It was posted on 17th. So it did meet the tracked 48 hour service if what the post office says is correct.

Getting the tracking to work was another story. It didn't work as it should online and a phonecall to the Post Office was necessary to elicit the information.

 

The confirmation of receipt and then confirmation of DNA extraction emails are only sent once we have been notified by the processing centre of receipt and extraction. We have been talking with the centre to try and understand why we aren't getting the information that we were promised and I won't say that we fully understand what has gone wrong but we have learnt that they have in the region of 3000 spit kits which haven't been booked into the system. We have been promised that this will happen by the end of next week, once it does we can then send out the confirmations.

So I'd ask for people to wait for another week. We anticipate that the vast majority of those who are waiting for responses will receive them next week, as it takes very little time for us to send the confirmation once we know it has been booked in.

We understand that this is frustrating for everyone who has sent off a sample, it's obviously not how we would want things to be but these things have been annoyingly outside of our control.

 

A lot of anger in the Remember meeting around the exclusions from DecodeME. I understand their annoyance as an otherwise excluded person. This seems to be everywhere I am finding people talk about the trial, anger seems to be continuing and the FAQ hasn't resolved it given many of these people have had ME for decades severely and expect they would be the ideal candidates.

 

I'm sorry to hear that but everyone who takes part is part of DecodeME, whether they get asked for a DNA sample or not. I can understand people being disappointed in not being able to take part in the DNA phase but being ill with ME for a certain length of time doesn't guarantee that they will match the criteria that we are using.

 

And it turns out we aren't even very good at being ME/CFS examples

Disappointment at not having top quality spit I understand but anger suggests misplaced entitlement - presumably if these are old timers they've been asking for science to take ME/CFS seriously - well now it is and DecodeME being run in the way it is, is what science looks like.

 

At last!

I've received an email from DeCode ME saying:

"Dear Participant,

We've received your saliva sample and are checking it to make sure we can extract your DNA from it.

Thank you for sending it. We will let you know once your DNA has been successfully extracted, or if we need you to provide another sample.

We're looking forward to studying your DNA once we have checked your sample.

Thank you, we can't do this study without people like you."

I sent my sample on 13th September.

Or was it October...? Yes - looks like I got the month wrong in my query!

 

I too received this email yesterday. Hurrah!

 

Me too! Happy and relieved it arrived.

For anyone else still waiting, it was 4 and a half weeks between me posting it and getting the email.

Thanks @Andy for keeping us updated on here, it meant I didn't pester them with unnecessary emails whilst I was waiting!

 

We received notification this week from the processing centre of receipt of over 4,000 kits that they hadn't previously booked in. We, obviously, aren't happy that this backlog had built up and appreciate everyone's patience while we tried to sort it out, hopefully it won't happen again.

 

Absolutely, there is no need to rush it. Out of interest, roughly how long ago did you receive the kit?

 

** Spit kits will not be despatched in December **

In order to avoid spit kits being caught up with the Xmas post we will be pausing dispatch of them in December. You will still be able to complete the questionnaire online at any time, it just means that we won't send out any kits to those asked to donate a saliva sample until the New Year.

 

I received my confirmation that the kit was received by Decode ME. It took between 3-4 weeks, I think. I thought the message was worded in a kind, thoughtful way and was pleased to receive it. Thank-you.