Closed UK: DecodeME updates, was recruitment thread.

Are you disguising the top-secret location you're reporting from?

(Sorry! )

 

Adam has also posted the same clip on his Facebook page

 

Please share if you can.

"Wow, 18,000 registered participants. 13,500 completed the questionnaire = a huge dataset on ME. Not everyone will be invited to provide a DNA sample so we need your help to #DecodeME. Help us now to recruit to the world’s largest study for people with #MECFS"

https://www.facebook.com/decodeMEst...5zr5ddJd75ox4mcCa1EDEeA15r9yArEMeuBd5MUKY1x7l

 

A supporter of the study has independently produced this short film promoting the study.

 

13,500 done with the questionnaire. That's really good. I hope you hit your goals quickly. PwME around the world are watching this study, and hoping it provides answers, or at least lets us ask questions intelligently.

 

"Steve Gardner from Precision Life on the power of the #DecodeME questionnaire

"The DecodeME questionnaire is creating the largest-ever dataset detailing both the symptoms and the lived experience of people with ME/CFS. The opportunities for future research and treatment development that this resource can provide are unprecedented. A large-scale dataset like this documenting patient’s experience of the disease is crucial to understanding more about the condition and the more people that fill it out, the better.""

https://www.facebook.com/decodeMEst...u8u5GMpbm3rne4wUtqPVWLrx8Qyw8gV1TcoYWQmxqGkHl

 

@Andy Perhaps you've already thought of this: An idea to recruit more patients that aren't already in ME networks could be to encourage participants to ask their GPs if they'd be willing to hang up Decode ME posters in their waiting rooms.

Posted off my spit kit yesterday, i'm so glad to see it finally starting

 

Great, thanks for taking part, and please do share widely and often if you can.

And thanks for the suggestion. We always anticipated that we would have to work to reach the number of participants that we need, so our focus in terms of communications will shift more towards asking the community to help us find people that we can't reach.

 

Has news of the study been shared adequately in Long Covid networks in order to recruit the LC MECFS patients? I have seen a bunch of ME folks sharing this but nothing from LC people really - is it just me?

My kit has arrived but I've not done the sample to get it sent off yet.

Encouraged by the latest video presentation; it was really moving to see this presented in such a clear and empathetic way. Thanks again to all involved.

 

Our focus has been on the larger number of people that we need to recruit, so obviously that has been on the ME/CFS community. There has been some sharing from the LC community, but that has been more 'organic' rather than anything that we have focused on. Again, this will be something that we will shift to if we need to.

Don't worry, no rush. As I learned when doing it myself, it can take some time to generate the amount of spit required, so best not to try to hurry it.

 

I received my spit kit a few days ago, and finally managed to do it and post it today. It must have taken about 10-15 minutes to generate enough saliva.

 

Recording of Sheffield ME and Fibromyalgia Group Presentation and Q&A with DecodeME principal investigator Prof Chris Ponting

 

Such an interesting presentation. Chris' enthusiasm came across strongly. I found myself - watching in bed lying flat- taking notes where I could on scraps of paper.
And now I'm exhausted. There were lots of fascinating questions.

 

Those participants who were asked to donate a saliva sample and who have returned them are notified when the processing centre has received them. A couple of tweets from participants about those messages

"What a great and important email from @DecodeMEstudy to wake up to so good to know if no DNA can be extracted - we get sent another kit"

"It was nice to be notified that the sample got there ok, especially with the postal strike. Hoping one day we get some better evidence to show that this damned illness isn’t a figment of our imagination and we can move on and invest in treatments."

 

@Andy,

I know this is very old-fashioned, but has anyone produced fliers for DecodeME that one could hand to a friend or someone one meets incidentally? I realise that everything is electronic now but if you have an A5 piece of paper in your pocket that reminds you to tell someone you know has ME to look at the website then another group of people might be reached?

 

As far as I recall we don't have anything that has already been printed but we do have a page of shareable resources on the website, https://www.decodeme.org.uk/ways-to-share/, which includes this leaflet (see attached file) which could be printed at home (obviously if you have a printer).

 

@Jonathan Edwards - is there any way to mobilise GPs and secondary care doctor to alert patients to DecodeME?

 

Yea as per Jonathan's suggestion - put a leaflet/poster in the waiting room!

 

I was thinking more directly, given that many PwME won't be able to go to a GP surgery and, even if they did, could easily overlook a poster in the waiting room. I was thinking more along the lines of directly talking to their ME patients.

 

Given the position of most GPs on the subject of ME, their implicit acceptance of a BPS position, why would they encourage what they believe are false illness beliefs by having such information available in their surgeries? Or by telling patients of their surgery that biological research, into what they believe is a psychiatric/behavioral issue, is going on? Let alone encourage them to participate.

Many probably believe that not 'enforcing' false illness beliefs is in our best interests - I'm not suggesting they are bad/evil, simply that they are wrong, and because of this they may be motivated, strongly, to not assist in such things.