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Thanks so much everyone - we're looking forward to answering your questions once again. As well as the papers above, feel free to ask us about: 1) Our ongoing research and research grants; 2) Current biobanking work - participant recruitment and releases to Profs Baird and Khan; 3) Recent...

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...

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

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...

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...

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...

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...

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...

@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...

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

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

These NIH Centres project is very new but we have been and continue to be in contact with a number of researchers from across the USA, and are always open for potential collaborations.

Not specifically re participants moving from mild/moderate to severe - but one of the reasons for doing a longitudinal study across is that naturally we would expect fluctuations in reported symptoms / clinical assessment over time, that we can then measure against the samples collected. -- Luis

Yes! We are one of the only collections in the world to collect from severely-affected participants in the home, and the only to do it systemically. We also try to arrange appointments so that clinical assessments and blood collection are done at different times, to mitigate the potential...

Yes - all applications for samples go through an ethical review and peer review process, to make sure that their studies are of the highest benefit to people with ME. We encourage in particular applications that fit with our research priorities: testing or generating new hypotheses on the...

We have done some work on this- some publications suggest that up to 90% saving can be made by using biobanks. (So our samples could cost as little as a tenth of what they might do if independently recruited.) This applies particularly to the severely-affected cohort, who are visited at home; a...

Of course! We would like to look in more detail at gene expression and immunological abnormalities to follow up our existing findings. We think there is also more work to be done in genetic association and energy metabolism, to mention just a couple of areas. -- Luis

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...

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...

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...