Closed UK: DecodeME updates, was recruitment thread.

Transcript and audio only version of the webinar now available here, https://www.decodeme.org.uk/webinar-recording-and-transcript-second-questionnaire/

And, separately, the final email newsletter for the year.

"As we approach the end of the year, we wanted to thank you for everything we have achieved together in 2023:

  • We closed participant recruitment in November. Almost 27,000 people signed up and completed their questionnaire, and over 21,000 were invited to provide a DNA sample. Together we created the largest database and resource of ME/CFS people in the world, which was recognised in the UK Government’s ME/CFS delivery plan in August. This is an amazing achievement. We are absolutely delighted to be moving forward to the next stage with such a strong cohort of participants. Thank you!
  • Analysis of the questionnaire answers from the first 17,000 DecodeME participants was published in August. This generated substantial national and international media coverage. Read our summary blog here.
  • In the past year, we also hosted several Q&A webinars which can be found on our website here. Subtitles, transcripts and audio-only files are available, so you can watch, listen or read at your own pace. These include our most recent webinar from the 14th of December.
Click here for a replay of the 14 Dec webinar

Looking ahead

Our focus now is on getting as many spit kits back as possible.

If you are yet to return your kit, please do so by the 31 January 2024 at the latest. As there can be unpredictable delays with the post, especially over the holiday season, please post your kit back to us as soon as possible and before this date, if you can. Each sample returned will strengthen the results of our research, so we really appreciate every single kit sent back.

In January, we will invite all existing participants, who completed the first questionnaire, to complete a second questionnaire. This second questionnaire is designed to give scientists more detailed information on ME/CFS. Read our blog here.

Finally, the DecodeME office, phoneline, and email will be closed for the holidays from 18 Dec 2023 to 7 Jan 2024.

Sending you Happy Holiday greetings from all at DecodeME!
Thank you for supporting the study, we couldn’t do this without you!

Warmest wishes,
The DecodeME Team"
 
boolybooly said:
I have been sent a second spit kit, but I have already sent one in months (a year) ago.

Is this as it should be or is it clerical error? I am confused! Would not be right to duplicate my data, obviously.

https://www.s4me.info/threads/uk-decodeme-recruitment-thread.29463/page-13#post-446082
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No, that probably shouldn't have happened.

Even though the team are now holiday until the New Year, please could you send an email to info@decodeme.org.uk, explaining the situation to allow them to investigate? Please don't do anything with the spit kit for the moment. Thanks for highlighting this.
 
Andy said:
No, that probably shouldn't have happened.

Even though the team are now holiday until the New Year, please could you send an email to info@decodeme.org.uk, explaining the situation to allow them to investigate? Please don't do anything with the spit kit for the moment. Thanks for highlighting this.
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Of course, no problem, thankyou for validating my doubt and the suggestion, wilco! o7
 
Hello,

I have received another spit kit, though I sent mine back many months ago.

I didn’t receive an email to say that it was received but recently had an email to tell me that a kit was on its way to me.

I have emailed the DecodeME team to see what is going on.
 
dangermouse said:
I didn’t receive an email to say that it was received but recently had an email to tell me that a kit was on its way to me.
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Did you ever query whether your sample had been received?

I wondered if someone was checking through previous messages and procedures, and couldn't be sure that some returned kits that were lost en route to the lab had been reissued.

Obviously if you never got in touch to ask ... that's not the explanation. :)
 
EndME said:
Given some of the recent genetic findings on Raynaud’s I was wondering if that is somehow partially assessed in one of the DecodeME questionnaires (I fully understand that there’s also a rather smaller upper limit to what can be assessed)?
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No, sorry, it isn't. Obviously though we will compare our genetic findings with that of other studies, and noting any reasonable connections if there are any.
 
Thank you for your email.


When the samples arrive at the lab, they enter in a queue to be extracted. Unfortunately, the lab had difficulties extracting enough DNA from your sample for the analysis and had to schedule a second extraction to try to collect more DNA material, which is a slightly more complicated process and ended up causing the delay.


Unfortunately, the second extraction was also not successful. The lab hasn’t sent us the official results yet (that is why you haven’t received any notification email), but to speed up the process we had already ordered a new kit for you to ask for a new sample. It was sent out to you before Christmas.


I’m very sorry for any confusion caused. Please let me know if you have any other questions.
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Turns out they were unable to extract enough DNA. I had better get spitting!
 
Andy said:
Coming soon – DecodeME’s Second Questionnaire

We wanted to give you a quick heads-up on our plans for a second questionnaire.

We would like to thank all participants for their amazing help to date and to ask for their continuing support with this additional activity.
  • All existing participants, who have already completed the first questionnaire, will shortly be invited to complete a second questionnaire
  • This second questionnaire is designed to give scientists more detailed information on ME/CFS
  • Completing this second questionnaire is completely optional, but your answers will help us understand more about ME/CFS.
  • Participants who completed a paper copy of the first questionnaire will be sent a paper copy of the second questionnaire along with their invitation to participate
  • To give people who are completing a paper copy a little extra time, we will send the paper copies out in December and they should be posted back to us by 15 February 2024
  • Invitations to complete the second questionnaire online will be send to all other participants at the beginning of January. You will have until the 29 February 2024 at 5pm to complete the online version of the second questionnaire
More at https://www.decodeme.org.uk/second-questionnaire/
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Email invitations are now being sent out today to existing participants. This is being done in batches, so there is no guarantee of when exactly you might receive it but the plan is to have sent them all by the end of this week. If you don't see it by the weekend, please do check your spam/junk folder in case your email provider has decided that they didn't like the look of it.
 
Andy said:
Email invitations are now being sent out today to existing participants. This is being done in batches, so there is no guarantee of when exactly you might receive it but the plan is to have sent them all by the end of this week. If you don't see it by the weekend, please do check your spam/junk folder in case your email provider has decided that they didn't like the look of it.
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Got mine and already done it! :woot:

Thanks as always to the DecodeME team! :thumbup::thumbup::thumbup:
 
Coincidentally to our release of the second questionnaire, two case studies about patient representation in research have been published following discussions that Chris Ponting and I had with someone from the UK Research Institute.

Representing public voices in a research study

The patient voice is at the centre of everything that happens in this ME/CFS research study, so the community has influence in what is decided.

By Andy Devereux-Cooke, co-founder of the Science for ME forum and a co-investigator (Patient and Public Involvement) on the Management Group.

https://www.ukri.org/manage-your-aw...presenting-public-voices-in-a-research-study/


Putting people with lived experience at the heart of research

People with lived experience are at the heart of this ME/CFS research study and involved in all aspects of the research, from design, governance and delivery.

By Professor Chris Ponting, Investigator, MRC Human Genetics Unit at The University of Edinburgh.

https://www.ukri.org/manage-your-aw...th-lived-experience-at-the-heart-of-research/
 
I've filled in my questionnaire too, and my daughter has done hers.

A very well set out questionnaire. Thanks as ever to the DecodeME team.

There was only one question I had trouble answering, it was something about whether I sleep more or less when in PEM. I think I start off sleeping less because of tired but wired symptoms, then end up sleeping more through sheer exhaustion.

The letter explains the purpose of the questionnaire well:

This questionnaire is designed to delve deeper into your experience of ME/CFS. It asks questions suggested by people with ME/CFS and standard questions, previously used in other studies. This will enable useful comparisons to be made with other illnesses and populations.
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I'm doing the questionnaire now. I'm struggling a bit with the pacing question. It hasn't improved my symptoms, but on the other I'm sure I'd be worse without out so it hasn't had no effect.

Also about PEM. I think I'm usually in rolling/layered PEM, but I've answered the questions about large deteriorations caused by something major like a medical appointment, because that's clearer to define.
 
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