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

We are delighted to confirm that the UK ME/CFS Biobank team (Project Lead & Clinical Lecturer, Dr Eliana Lacerda, Co-Principal Investigator Dr Luis Nacul, Research Nurse & Biobank Coordinator Caroline Kingdon and Project Manager (Administrative & Financial) Jack Butterworth) will be taking part in an Ask Me Anything this coming Thursday with us, so get your thinking caps on so that we have something to ask them.




While I have no expectation of any issues, for the record I'd like to say the following:

• Even though it's an "Ask Me Anything thread", it's not an "I'll Reply To Anything" thread. There may be some things that they won't be able to answer for various reasons (confidentiality, professional courtesy, etc) and as they have limited time with us, the focus will be on those questions they can answer.
• The Biobank team are our guests here, and giving us some of their valuable time. Our crack team of moderating ninjas will be on high alert to any posts that break our forum rules, or that are not in the spirit of the event.

Should you wish to have a look at the work they are doing then their website is here, http://cureme.lshtm.ac.uk/, and if you wish to support their efforts through a donation, their Christmas donation appeal page is here, https://www.justgiving.com/fundraising/ukmecfsbiobank



This thread will remain closed until shortly before the event, if you want to discuss it, the pre-event thread is here, https://www.s4me.info/index.php?thr...g-thread-this-thursday-pre-event-thread.1459/.

ETA: Added the team members who are likely to be answering questions.
ETA2: Updated team members and added pictures.

 

Thread is now open. Please keep any questions polite and as clear and concise as possible. And thank you to the Biobank team for taking the time to be here with us.

Forum members, if you have any questions in the pre-event thread, https://www.s4me.info/index.php?thr...g-thread-this-thursday-pre-event-thread.1459/, please transfer them here.

ETA: I'll try and keep track of what is asked and if a question on the previous thread isn't transferred over, or otherwise asked, I'll do my best to make sure it appears.

ETA2: Slide show of the Q&A now created.

 

Hello everyone,

The team are just gathering and we're very excited to be here. As Andy has mentioned above, we have four of the team present and I'll sign off responses with their names. Thanks in advance for all of your questions.

-Jack

 

Yes- it absolutely part of our research to correlate reported symptom levels with biological markers. Excitingly, this is taking place over a longitudinal study- we will be collecting blood every six months from participants as part of our second phase study running from this autumn until 2021, and the lab and clinical data can be integrated to pick out potentially important indicators.

 

Theoretically, this is very possible- we have 44 aliquots from each participant so one could cross-reference different studies' results using each person's unique identifier. This data can be made accessible to researchers requesting data.

-- Luis/Eliana

 

I'm sure I should be able to put this more concisely:

I've thought that a good way of getting more CFS studies done, would be to have researchers for other conditions make use of 'CFS' as an ill-health control, where patients were likely to have a range of different causes of their own ill-health, and suffer from many of the secondary problems related to ill-health. eg: if there was a potentially interesting abnormality found in those with MS, compared to healthy control, checking to see if it was shared by CFS patients might help let people assess how likely it was to be specifically related to MS.

Is something like that a potential use of the biobank, that could appeal to researchers looking for a control group? Does the uncertainty about the causes of CFS mean it's something other researchers might avoid as an ill-health control group? Or would differences in the way samples were collected for the biobank vs independently collected samples for other conditions mean that this is not something the biobank is really suited to?

 

How many applications from researchers requesting samples is the biobank getting? Is interest in ME/CFS increasing?

 

The CureME team is not specifically looking at mitochondrial energy production- though the biobank has enabled Karl Morten's study on energy metabolism and it has been a real pleasure sharing our samples with him.

-- Luis

 

And to reply to your question re the NIH- our clinical/clinical epidemiology papers have started coming out, and you can find all of our publications here: http://cureme.lshtm.ac.uk/about-us/publications/. Some of the preliminary lab results (in the areas of immunology, virology and gene expression) are very exciting, and are due for publication in the first of 2018; keep your eyes peeled!

-- Jack/Luis

 

We definitely feel interest in ME/CFS is increasing - we think that with Unrest, our NIH renewal and the NIH Centres of Excellence, and the review of the NICE guidelines, that we have seen something of a tipping point in the second half of this year with regard to the study of ME/CFS.

We have distributed samples to four teams in the last eight months (since opening) in Brazil, Oxford, Spain and here at the LSHTM. Others have inquired about the biobank, with three applications in the pipeline including one received last week. We are definitely seeing an uptick in growth!

-- Jack

 

We have envisaged this possibility - we have inquired about working with other (non-ME/CFS-specific) biobanks in this effort, and we are also partnering with other biobanks in Europe with ME/CFS collections to encourage harmonisation of protocols. Other biobanks in Europe have adapted their protocols to be based on ours, to enable sharing of samples and to increase the quantity of available data in the future.

-- Eliana

 

Our reply to 'strategist' gives some background on the applications we have received, and we have provided samples for studies of real quality. Of course, we would love to see an increase in applications - the more studies into ME/CFS, the better - but we are really pleased with what we have seen thus far. All applications are peer-reviewed and ethically-reviewed, but submitting an outline application is not an onerous process. We hope to be seeing more next year!

No projects funded by the MRC currently use UKMEB samples.

-- Caroline/Luis