Researcher Interactions UK ME/CFS Biobank Ask Me Anything thread, Thursday 14th December 2017, 2.30 to 3.30pm GMT/UTC

@Aimossy asked "Is there anything they are able to tell us about what they are finding in their work? If possible."[/QUOTE]

We have held some focus groups (with pwME) where we presented preliminary findings, particularly from our lab work. In accordance with the focus groups' wishes and as part of our agreement with the NIH, the full publications when they appear will also be available in plain English for lay people. Those publications are due next year- I know it is frustrating to have to keep waiting, but we want to be really sure of some of our findings before they get released to the scientific community and general public.

-- Jack

 

Thanks to everyone involved. Interesting questions and answers.

 

Thank you everyone! We're going to wrap up here- sorry that we didn't have time to answer every single question, but our email is mecfsbiobank@lshtm.ac.uk if you want to get in touch with us. Please keep following the UKMEB across social media and on our website, and we would be hugely grateful (as ever) for any donations received to our Christmas Appeal.

Very best wishes to you all, and to everyone at Science for ME,
The UKMEB Team

 

Just to repeat the link to their Christmas appeal - https://www.justgiving.com/fundraising/ukmecfsbiobank - this Q&A session has reinforced for me how vital resources like the Biobank are in making progress.

Admin note: This thread will remain open so discussion between members can potentially continue but please, no more questions of the Biobank team, they will be getting back to doing science for all of us!

 

Huge congratulations to the S4ME team who organised this. A great success!

Can't wait for the next one.

 

So, how was this for everybody? Would you like to see more "events" like this? Any thoughts on how we could have improved it?

 

I have just caught up. Sorry I missed it. I think this was really good. well organised and having the preparation before was a good call (and thank you for asking my question @Andy). I also liked the photos of the people at the beginning. I thought it was about the right length. I also can't wait until the next one. I particularly liked the teaser for some of the prelim studies

The only thing I can think of that may be useful to enhance future "ask me anythings" is perhaps some stimulus materials before hand (in the discussion thread not the Q&A thread) for those who struggle to wade through web sites. I notice that more questions come on threads when there are visuals (like graphs of data etc) may be a few lines on the Bio Bank with relevant links and some pictures? I feel like I should have done more homework before hand.

Good job and well done to everyone involved

 

Excellent, thanks to @Andy and any others involved in setting this up

Big thank you to the Biobank Team

 

A great initial success, well done and thanks.

I was wondering as I was reading through the Q and A whether more open ended questions might have proven more conversational?

Questions with beginning phrases including 'How much?'; 'In what ways?' 'Which processes?'; versus questions requiring short affirmative or negative answers.

 

Wow everybody, that was brilliant! Thank you to UKMEB and @Andy for all his hard work and everybody for asking such great questions - What a magic afternoon!

I'm very disappointed to have missed this event, I would most definitely rather have been here than in the dentists chair...

 

I liked it, but expected more participation. The announcement thread seemed to generate more unique users with questions than the actual event. Not sure why that is. Perhaps timezone differences. That could be worked around by collecting some questions beforehand from users who won't be able to make it, while still allowing real time questions during the event (which is important because responses can stimulate further questions).

 

I was very impressed with the quality of the questions that people put forward. And I found the 'real-time' aspect very enjoyable.

I wouldn't change anything, actually - at least not on the basis of this event.

It might be worth asking the biobank team for their perspective, though.

 

A valid point but given that there wasn't enough time for them to answer all the questions I personally think that a reasonable balance was struck. When the questions are being asked by multiple people, with no coordination between them, I think more closed questions will tend to be used.

 

It wasn't a criticism, merely an observation.

 

But then the announcement thread allowed people to participate over a far wider range of time, which I think would explain that point.

 

I'll let Jack's fingers cool down after all that frenzied typing that he had to do and then drop him an email tomorrow.