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

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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.

Link to part two: [TBA, we are currently working on this, due next week.]

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.

 

Reserved for part two.

 

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.

 

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