Researcher Interactions Video: Q&A with members of the CureME / UK ME/CFS Biobank team June 2019 Pts 1 & 2

https://www.youtube.com/watch?v=IDqUI3Kulek

​

The Science for ME forum are delighted that Andy, who works on outreach for us, was able to speak with members of the CureME / UK ME/CFS Biobank team.

The conversation has been split into two halves, part one talks about their research, while part two discusses their biobanking work.

To find out more about CureME, visit https://cureme.lshtm.ac.uk/

To read about their publications, visit https://cureme.lshtm.ac.uk/our-studies/

And to donate to support their work, visit https://cureme.lshtm.ac.uk/donate-to-cureme/

Many thanks to Caroline, Eliana, Jack and Kate for their valuable time.

 

https://www.youtube.com/watch?v=Fd73Grtk1Gk

​

Part two of the Q&A with the CureME team.

While part one focused mainly on the CureME research efforts, part two focuses more on the Biobank - the processes involved in sample donation and release, how many, average-sized, sample releases that they could accommodate, and the typical saving that can be made from using biobank samples, amongst many topics of conversation.

 

Thanks for that, @Andy! That was great!

I didn’t understand the distinction between CureME and the UK ME/CFS Biobank, I thought they were the same thing. Good to have that explained. They clearly have developed a top notch biobank to have come runner up in the UK for best biobank, which is something for the UK ME/CFS community to be proud of. And great to hear that they’re looking at collaborating with others to help set up similar biobanks using their protocols elsewhere.

I especially liked their caution in how they describe their results. I’m sure it’s difficult to not jump ahead or toot one’s horn (especially if there’s a chance that tooting might lead to $$$), but I really appreciate the caution.

 

Well done @Andy !

I was a bit surprised by their answer to the question of whether the handgrip strength test could do a few more repeats to see if ME/CFS patients show a decline as the exercise progresses. They argued that they do not want to do that because they are afraid to make patients worse. I would have thought that a few more repeats wouldn't cause a significant relapse except perhaps in patients with severe ME/CFS (which could be excluded) - but it's good to see they are being cautious with this. Rather have a research team that is a little too cautious than the other way around.

 

There was a time when grating a bit of cheese for a baked potato or opening a bottle with a stiff top was something I wouldn't risk because it could leave me on the sofa for a couple of hours, and I only have mild ME, so I think they were quite right not to risk it.

 

Just viewed this. Thanks @Andy for setting this up. This is so meaningful to remove the barriers between us and the researchers.

 

Part two now available, https://www.s4me.info/threads/video...bank-team-june-2019-pts-1-2.9973/#post-176802

 

Very interesting interview. Thanks, Andy and the Biobank folks.

I particularly like their emphasis on establishing nationally and internationally consistent protocols to allow for valid inter-study comparisons.

And I like that they have a patient rep involved in checking and approving applications for release of bio-samples to outside researchers.

Also intrigued by the idea, mentioned briefly, of creating MOOCs to educate health professionals.

 

Hi thanks for sharing this! I've watched part two.
They mention 20 tests they do in house upon receiving samples.

Does anyone know what these 20 initial tests are?

I found a list but entries such as 'thyroid function' are not clear.
https://cureme.lshtm.ac.uk/researchers/431-2/

I will watch part one now to see if its in there. I have emailed BioBank and asked them.
Thank you.

 

Hi Float, welcome to the forum.

I don't know what the tests are and contacting them would have been how I would have found out, hopefully they'll send you back the answer soon.

 

Thanks to the ME Association for sharing.
https://twitter.com/user/status/1144157913575018496