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

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?

 

I've emailed them.

 

To quote myself, the reply I've received is

 

@Andy
Is there an email address for the biobank?

 

mecfsbiobank@lshtm.ac.uk but also in Sasha's original post ('behind' the blue text "contact us").

 

Thanks Andy. Have contacted them.

 

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.

 

http://cureme.lshtm.ac.uk/the-uk-mecfs-biobank/

Research nurse ( names has disappeared-ugh) recommended following progress on website.

There is a place to put your email address on link above for info updates.