17 Nov 2017 | UK Biobank now recruiting ME/CFS patients to give blood samples

Sasha

Sasha

Senior Member (Voting Rights)
Biobank said:
UPDATE November 2017
CureME’s multi-year study into the biomarkers of ME/CFS has been renewed by the US National Institutes of Health for a further four years. This grant enables some further recruiting to the biobank, both to further our research at LSHTM and to provide samples for translational research at other institutions.

Recruiting for our Phase 2 study will be beginning in early 2018; to register your interest, please contact us.
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and:

Code: 
https://twitter.com/mecfsbiobank/status/931096173179539458



What I don't know is whether PWME outside London can participate.

Do you know, @Jonathan Edwards?
 
Andy said:
I've emailed them.
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To quote myself, the reply I've received is
Thanks v much for writing; there has been a flood of interested people this morning. At the moment, we are limited to Norfolk and Greater London area- this is for purely logistical reasons, to do with access by a member of our staff/getting the blood samples back to the UKMEB in the very limited time window we have before cryopreservation. But while we particularly encourage anyone from those areas to get in touch, we are happy to hear from anyone- other areas of the country may become possible in the future, and we won’t forget you.

Clearly, we can’t use everyone- the second cohort to be recruited is more limited than the first anyhow (the focus has moved on to doing the longitudinal comparison studies, over the entire 9-year lifetime of the NIH grant). There are also various exclusion criteria we have, and in addition we can’t only recruit people who want to be recruited to the study, for reasons of bias etc… But hopefully quite a few people will have the chance to be part of the new cohort.
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Had a very prompt reply from the research nurse at the biobank requesting information giving criteria I can't comply with.
1) need to be younger than 58 (18-58)
2) must not be on steroids or antivirals ( affecting immune system)
3) address must be given. I might fit there since I am in London
4) must not have cancer or heart disease or major psych illness
5) am I housebound?

There was also a note that made clear that everyone fitting the criteria may not be suitable.
@Andy
 
Confirmation received this morning from the research nurse that I am not suitable to provide samples for biobank. It was as I expected.

I had also asked whether samples could be collected at home because that hadn't been fully stated. They can, funded by the NIH grant.

This is great because, assuming they get plenty of offers of samples, they will be able to select across the severity range, assuming that this is what they want to study.
 
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