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ME biobank UK could use our help

Dolphin

Senior Member
Messages
17,567
http://forums.phoenixrising.me/inde...nue-biomedical-research-pr.54786/#post-915309
That is exactly right.

I am not aware of having urged people to donate to any particular project in the past and I do not really expect to do so for other projects in the future but I want to make an exception for this one. It is a resource for everyone.

The $2.1M is fantastic. But it is for specific research projects. The Biobank has to have a budget for infrastructure and strangely that has proved more difficult to cover than the actual research. It is strange because the amount needed is really quite small. My understanding is that about £75,000 a year is needed to keep the inflow of samples coming in order to guarantee long term viability.

Wellcome did not come up with money this year but I think the renewed NIH grant, together with ongoing research, may help a more favourable response next time around. Nothing succeeds like success, as they say. There may also be ways of underwriting at least some of the infrastructure costs. This is the sort of money that small charitable bursaries can sometimes be found to cover too.

On the other hand it seems to me that this is something that members of PR could take real pride in making happen. Even a third of the money needed would be a huge help. What I think would be particularly helpful would be for people to commit themselves to a small sum on a rolling annual basis - because it is a rolling annual basis that is needed. In a year or so someone like Wellcome may pick up the tab but money is not going to go to waste.

I think people may not realise just how impressive the achievement of the LSHTM team is - chiefly the hard work of Luis Nacul, Eliana Lacerda and Caroline Kingdom. Amazingly, the ME Biobank seems to be the largest disease specific Biobank in the entire UCL/RFH facility. This is state of the art biobanking. The cohort of patients is based on community sourcing so is as close to a population based cohort as is likely to be feasible. If samples are used by researchers to replicate testing of any particular hypothesis this has the huge advantage that the samples have been collected in a way that will have no bias relating to that particular hypothesis. Good sample collection is often the most time consuming part of research. Now researchers have samples ready and waiting.

I could not actually see the news on the CureME website yet but it should be up there today. If people want to indicate their appreciation of hard work on their behalf what could be better than going to the website and signing up for a small (or large!) donation on an annual basis? I think the set up is already there. And if one or two charities can chip in I see no reason why the Biobank should not have infrastructure assured by Christmas. Then the international research community will have the resource base it needs.