Closed UK: DecodeME updates, was recruitment thread.

EDIT: Recruitment is now closed, thank you to all who participated.

First publication, which is analysis of questionnaire answers from 17k participants, can be found here, Typing myalgic encephalomyelitis by infection at onset: A DecodeME study, 2023, Bretherick et al

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For those of you who registered for updates at www.decodeme.org.uk, keep an eye on your email inbox later this morning.

As of 11am, 12th Sept, an email was sent to everybody who registered for updates, giving them early access to the full registration and questionnaire process. If you have not seen it, please check your spam folder.

Once recruitment opens at 12pm today, to take part, you will need:

• to have been diagnosed with ME (or ME/CFS, CFS or CFS/ME) by a health professional
• aged 16 and over
• and be based in UK (excluding Isle of Man and Channel Isles)

and then will need to complete our cohort selection questionnaire.

We are keen for as many people as possible to take part, so anybody can now go to www.decodeme.org.uk and click on the appropriately titled "Take part" button to start your participation.

We would also appreciate people sharing the study - for resources for sharing see https://www.decodeme.org.uk/ways-to-share/

*** Please note: not everyone will be asked to provide a saliva sample. We realise that this will be disappointing to those not asked, after all everybody will have spent precious energy and time on completing the cohort selection questionnaire and we are very grateful for that. Your answers will still be very useful in regard to establishing a profile of the population of people with ME/CFS in the UK. ***

ETA: I think I am now done for adding additional information to this post (fingers crossed).

ETA 2: Changed "mainland UK" to "UK (excluding Isle of Man and Channel Isles)". Unfortunately, in brief, issues with postage to both of these areas prevents us from including them.

Our discussion thread for the pre-recruitment stage of DecodeME can be found here, DecodeME - UK ME/CFS DNA study underway

 

People with ME invited to take part in major genetic study

"DecodeME aims to reveal the tiny differences in a person’s DNA that can increase their risk of developing the condition.

People who have been diagnosed with myalgic encephalomyelitis (ME) are being invited to take part in the world’s largest genetic study of the disease.

The study, named DecodeME and led by researchers at Edinburgh University’s MRC Human Genetics Unit, aims to reveal the tiny differences in a person’s DNA that can increase their risk of developing ME, also known as chronic fatigue syndrome (CFS).


It is estimated that more than 250,000 people in the UK are affected by the condition, with symptoms including pain, “brain fog” and extreme exhaustion that cannot be improved with rest.
.....
Individuals with ME or CFS who are aged 16 and over and based in the UK are invited to take part from home by signing up on the DecodeME website from 12pm on Monday."

https://www.independent.co.uk/news/health/people-dna-covid-b2165026.html

 

Hunt begins for genes to unlock mystery of ME

"A scientific mission to find the genetic signal to one of the world’s most puzzling medical conditions begins today.

British researchers are inviting thousands of people with myalgic encephalomyelitis (ME) to provide DNA samples for analysis to identify the minute differences that make them susceptible to the debilitating illness.

At least 250,000 people in the UK have ME, which affects about 2½ times as many women as men. The great majority of cases develop after a viral infection, rendering about a quarter of patients housebound or bedbound. It is fatal in extreme cases and there is no known treatment or diagnostic test."

Paywall, https://www.thetimes.co.uk/article/01503e8a-31ed-11ed-a08f-af84e8072b22

Open access, https://www.thetimes.co.uk/article/...2?shareToken=ed22f36d0918b587a559b642eb9022a1 (might be time-limited) from

 

People with Myalgic Encephalomyelitis to take part in world's largest genetic study

"People who have been diagnosed with myalgic encephalomyelitis (ME) are being invited to take part in the world's largest genetic study of the disease.

The study, named DecodeME and led by researchers at Edinburgh University’s MRC Human Genetics Unit, aims to reveal the tiny differences in a person’s DNA that can increase their risk of developing ME, also known as chronic fatigue syndrome (CFS). It is estimated that more than 250,000 people in the UK are affected by the condition, with symptoms including pain, “brain fog” and extreme exhaustion that cannot be improved with rest."

https://www.express.co.uk/life-styl...-syndrome-me-genetic-study-health-news-latest

 

"People with ME invited to take part in major genetic study

DecodeME aims to reveal the tiny differences in a person’s DNA that can increase their risk of developing the condition."

https://www.standard.co.uk/tech/science/people-dna-dna-research-b1024901.html

[Looks to be the same article as the one immediately above]

 

BBC Radio Scotland interview with Chris Ponting. Forward to 15:50 for the start of the interview.

https://www.bbc.co.uk/sounds/play/m001bzs4

 

Times Radio interview with Jennie Jacques (actress with ME) and Chris Ponting. Forward to 2:44:00 for the start of this interview.

https://www.thetimes.co.uk/radio/show/20220912-11538/2022-09-12

 

Especially impressive given the scale of what's dominating UK news right now!

Well done indeed to the team.

 

As of 11am, 12th Sept, an email was sent to everybody who registered for updates, giving them early access to the full registration and questionnaire process. If you have not seen it, please check your spam folder.

 

Just got my email too.

 

This is excellent news! I hope your website doesn't crash from the excitement! I'm amazed it's getting so much media coverage, and I hope it lets you achieve your recruitment goals quickly.

 

email safely arrived here - very happy to see it!

 

Done. I suspect that ticking the box for diagnosed adrenal insufficiency will rule me out, though. As it should. No-one wants confounding comorbidities, even iatrogenic ones which postdate the ME/CFS diagnosis.

 

Oooh, thank you, got my email now. Looking forward to seeing how the study pans out! A big THANK YOU to all involved.

 

A note, that I have also added in the opening post of this thread.

Please note: not everyone will be asked to provide a saliva sample. We realise that this will be disappointing to those not asked, after all everybody will have spent precious energy and time on completing the cohort selection questionnaire and we are very grateful for that. Your answers will still be very useful in regard to establishing a profile of the population of people with ME/CFS in the UK.

 

Professor Chris Ponting and Jennie Jacques on Times Radio this morning discussing ME/CFS and the new DecodeME study that was launched today.

https://www.youtube.com/watch?v=SFi9pfLRgGc

 

I don't think I've received an email from DecodeME since 02/10/20, and haven't received today's. So maybe my participation isn't needed?

 

Unfortunately with any mass emailing, a certain number simply don't get through, and sometimes we can't know why that is the case, so I'm sorry that you've not received anything since then.

We are keen for as many people as possible to take part, so for anybody, such as yourself, who hasn't received an email invite, you can now go to www.decodeme.org.uk and click on the appropriately titled "Take part" button to start your participation.