Closed UK: DecodeME updates, was recruitment thread.

Got my confirmation too today. Sent 21 October, so it's only taken four and a half weeks to arrive! Still, it got there eventually ... hopefully they can successfully extract DNA from it now.

 

We are currently experiencing technical problems with the #DecodeME questionnaire portal. It is being investigated and we will let you know once it is resolved; in the meantime, apologies to anybody inconvenienced by this.

 

"We are live again!

You can now register https://bit.ly/3VAvjla to take part in Decode ME Study study.

However, there may be a delay in receiving notification at the end so thank you for your patience!"

 

@Andy- am I right that the DNA is extracted in the UK, then sent toSan Francisco for another process? (I hope I haven't made up the bit about San Francisco).
Is that where the genome is sequenced?

 

Just outside, Santa Clara.

Yes.

 

@Andy- thank you

 

Webinar recording and transcript – Taking part in DecodeME – 16th November 2022 webinar.
https://www.decodeme.org.uk/webinar-recording-and-transcript-taking-part-in-decodeme/

Some initial data from the questionnaire.

"Over 90% of you report brain fog; nearly 90% of you say that your symptoms are disabling; nearly 90% of you say that you have headache, eye pain or migraine; nearly half of you also report IBS; a third of you report fibromyalgia; and some auto-immune conditions appear very infrequently, which I was quite surprised by.



This is probably the largest survey of lived experience of people with ME worldwide and I wanted to show you these results that came to me on Monday morning as soon as I could. This morning we had a meeting with the MRC and the NIHR, funders of DecodeME, to show case to them how important these results are. That information essentially now can go back into the funders, into the UK CRC, Department of Health and Social Care process, to make sure that informed decisions are taken going forward based on the evidence.


You describe your illness in these ways:

Mostly fluctuating, worsening, relapsing, and remitting. Very few, unfortunately improving. This is a very sobering set of data that’s captured your lived experience and it is a message, as I said, that needs to go to the very highest level, how devastating ME is to most."

 

@Andy thank you for sharing, it will be very very interesting to see the full questionnaire results when completed.

Obviously the larger the sample the more reliable it will be, but given participants are self selected does the study include any consideration or quantification of how representative a sample it is.

 

All we are doing at this stage is presenting preliminary data, and our focus has been on launch and recruitment, so my awareness of what additional comparison with previous cohorts or calculations to show how representative our cohort is, is frankly non-existent at this stage, so I'm afraid I can't give you an informed answer.

 

Is the bar for 'disabling' an error?

 

In what way?

 

Well, most of the symptoms are disabling, aren't they? It just seems a strange thing to cite.

 

My understanding is that in the first bar chart (‘The lived experience’) is the number of individuals reporting the various additional conditions/symptoms and in the second (‘Illness described as’) what is indicated is the percentage reporting that pattern. So the bars are not indicating any measure rather percentage of people.

(Sorry if I am just confusing things more.)

 

"Update: We will be sending out the next batch of spit kits to participants in the New Year.
If you are waiting for one, it should arrive in January. You don't need to take any further action at this stage.
If you have a spit kit, please do post it back to us.
Thanks!"

Facebook: https://www.facebook.com/decodeMEst...xyfw7TVPeReLynBDbpWw1XJMrdY19ApjCPirbFFvPvNGl

 

"We're taking a break from 17th Dec – 4th Jan. We won’t be answering emails, the phone, or posting on social media, but we can’t wait to get stuck back in in 2023! Wishing everyone a happy holiday – the DecodeME team."

https://www.facebook.com/decodeMEst...3XsBo1MbX81Fre2jdG8UXQC85ifZz4qM5VkpCPzHqawxl

 

From Rowland Manthorpe, Sky News tech correspondent on Twitter,
"Not sure what to get the person in your life with ME/CFS for Christmas? Here's a suggestion: send them this link so they can sign up for DecodeME, the giant genetic study to uncover the causes of ME/CFS
Firm results from this will be the best gift of all"

 

I expected that GWAS studies (plural or singular) would have been run in thyroid disease --- seems difficult to treat thyroid disease ---- good reasons for doing a GWAS study i.e. separate from ME/CFS.

 

Sure this question has been asked --- is there a target date to publish results? Is publication/release of data dependent on reaching a target e.g. 20K participants?

 

The top result from a Google search on "gwas thyroid disease", Genome-Wide Association Studies of Autoimmune Thyroid Diseases, Thyroid Function, and Thyroid Cancer

Our target date is as soon as possible, balanced against wanting as many samples to analyse as possible. As I understand it Chris believes that we are likely to be able to release some preliminary results some time around the middle of next year.

No, we will publish the analysis of whatever number of samples we are able to get. The more samples we have, the more likely we are to find something and the more confident we, and the research community, can be in what we find. So the more that the community can help us to reach those who haven't taken part yet the better for everyone.