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

Adrian said:
Are all the samples from the UK? Do you think there may be differences in different countries and hence should the Biobank be replicated else where (say Japan, US, Australia)?
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All of our samples are from the UK at present. It's possible that one could see geographic differences in the disease, in which case biobanks across the world would be very valuable. This is why we have tried to encourage harmonisation of protocols with our European partners.

-- Luis
 
@Cheshire asked "I suppose different tests need a different amount of blood to be run (not sure anyway). What volume of blood is collected from a donor? On average, how many tests can be done with one donor?"

Just under 100ml of blood is collected from each donor in twelve different tubes. Two of these are immediately processed for clinical tests to exclude other diseases which could give similar symptoms. The other ten tubes are processed at the UCL-RFH and stored as up to 46 aliquots (tiny tubes) which are then frozen. Each aliquot can actually be used several times in one piece of research (i.e. they can be used again and again)- meaning each blood donation could be used in hundreds of tests!
 
How do you find patients. Could we help? Are there questionnaires that are used to select people

This question was asked on twitter relating to this
"I have filled in numerous questionnaires for the US Solve ME initiative. Do you have an equivalent for finding future patients or to indicate potential future areas of research?"
 
MMHI said:
I’m a severely affected patient who would like to be ‘recruited’ into a study - how do I go about getting into one?
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If you would like to send an email to mecfsbiobank@lshtm.ac.uk you can register your interest! Unfortunately, we can't use everyone- samples have to be back in the biobank within 6 hours of collection, so we only collect from certain geographic areas, and we also have to exclude people for various other reasons (age, illness, certain medications, bias etc.). But please do get in touch.
 
ME/CFS patients occasionally have biopsies done for various reasons - for example, a stomach biopsy if they're having stomach problems.

Should we be asking for the samples to be sent on the biolab, once they've served their purpose? Or would the non-random sampling, and/or practicalities of correct storage, etc. rule this out?
 
The UK ME/CFS Biobank said:
If you would like to send an email to mecfsbiobank@lshtm.ac.uk you can register your interest! Unfortunately, we can't use everyone- samples have to be back in the biobank within 6 hours of collection, so we only collect from certain geographic areas, and we also have to exclude people for various other reasons (age, illness, certain medications, bias etc.). But please do get in touch.
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Would it be possible to do a local sampling drive in big cities and have the samples couriered over to you together or something? Not sure if difficulty in getting patients is currently a limiting factor for you.
 
Esther12 said:
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?
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Sorry to miss this one! We actually do something very similar in reverse- we have a number of samples from people with MS, which we use as controls (alongside healthy controls) in various studies. Theoretically the opposite is of course possible, (using ME/CFS as a control to study another disease), and our samples could be used for that purpose. Hopefully our studies using MS controls will elucidate some things about that disease as well.

-- Jack/Eliana
 
Andy said:
A less technical one. How is the fundraising going? How far along to your target are you and what does your target amount allow you to fund?
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Whew! An easy one... Our fundraising is going really well- including Gift Aid, offline donations and the amount raised by the wonderful Janet Baker (check her out: https://www.justgiving.com/fundraising/janetbaker-me-cfs-biobank) we have raised over £11,000. We wanted to get to £10,000, and £25,000 is the dream- our next target is £15k.

As the fundraising concludes, we want to move on to finding new collaborators to release our samples to:

-- £10,000 would enable a further blood sample and data release,
-- £25,000 would enable the release of samples for two or three studies

Full info is available here: https://www.justgiving.com/fundraising/ukmecfsbiobank

-- Jack
 
Patients often report experiencing negative attitudes towards people with ME/CFS when interacting with members of the medical profession in the UK.

Just wondered - do you have the time and resources to educate the students at LSHTM and communicate with them about the research you are doing?

PS. Thanks for all you hard work and efforts - we really appreciate what you are doing.
 
Sasha said:
Would it be possible to do a local sampling drive in big cities and have the samples couriered over to you together or something? Not sure if difficulty in getting patients is currently a limiting factor for you.
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We are very keen on having extremely rigorous protocols for sample collection and storage - currently, that means that we have to collect them in a certain way, and have them delivered to the biobank within 6 hours to be processed and aliquoted. We haven't been limited thus far by difficulties in recruiting participants, and our stringent rules only help enhance the quality and impact of studies done using our resources. So no plans to change right now - but as ever, things may be different down the line.

-- Caroline/Jack
 
JamBob said:
Patients often report experiencing negative attitudes towards people with ME/CFS when interacting with members of the medical profession in the UK.

Just wondered - do you have the time and resources to educate the students at LSHTM and communicate with them about the research you are doing?

PS. Thanks for all you hard work and efforts - we really appreciate what you are doing.
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Yes! We have in the past focused on ME Awareness Day, in which we host an event to which all students and staff are invited, but we are also expanding our awareness and engagement right now: we are trying to be more active online, on social media and via our mailing list (and other mailing lists internal to LSHTM) and are holding events such as our screening of Unrest, at which a number of student from LSHTM and beyond were present.
 
The UK ME/CFS Biobank said:
@Cheshire asked "I suppose different tests need a different amount of blood to be run (not sure anyway). What volume of blood is collected from a donor? On average, how many tests can be done with one donor?"

Just under 100ml of blood is collected from each donor in twelve different tubes. Two of these are immediately processed for clinical tests to exclude other diseases which could give similar symptoms. The other ten tubes are processed at the UCL-RFH and stored as up to 46 aliquots (tiny tubes) which are then frozen. Each aliquot can actually be used several times in one piece of research (i.e. they can be used again and again)- meaning each blood donation could be used in hundreds of tests!
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Ar
The UK ME/CFS Biobank said:
The cost of collecting samples is up to £2500 per participant. It's difficult to say what the costs would be for a new project and it would vary depending on a number of factors, but it would be several times that, we think.

-- Jack
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why is the cost so high? Does that any include testing the samples as well?
 
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