The UK ME/CFS Biobank Christmas 2017 Appeal

Andy

Andy

Retired committee member
The CureME team has a simple mission: to understand ME/CFS. The causes of the disease remain unknown, but up to 250,000 people in the UK (and up to 17 million worldwide) have their lives changed by the condition. Despite the impact it has on lives and families, ME/CFS continues to receive little government funding.

We have an amazing resource of blood samples from people with ME, and want to maintain it and distribute our samples to biomedical researchers worldwide, who are searching for the biomarkers of the disease. Every donation helps in that effort - thank you.
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The UK ME/CFS Biobank (UKMEB) is the first ME/CFS-specific biobank in Europe, and one of the first in the world. It has collected over 30,000 aliquots (small tubes) of blood from patients with ME/CFS and multiple sclerosis (as well as healthy controls), using rigorous and consistent scientific protocols.

The UKMEB is committed to patient participation, and ensures that its research is always informed by and for the benefit of people with ME/CFS. It has already contributed to highly significant research in immunology (including on NK and T cells and cytokine profiles), genetics, virology, clinical medicine, epidemiology and on the disabling effects of ME/CFS.
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Read more and donate at https://www.justgiving.com/fundraising/ukmecfsbiobank
 
Worth quoting this bit too, I think:

CureME said:
We want to enable global biomedical research into ME/CFS, in the most cost-effective manner possible, by distributing our blood samples and datasets to chosen researchers around the globe. Our sample releases have already enabled studies in Valencia (Spain), São Paulo (Brazil) and Oxford (UK), and we want to take that further.

Our grants do not pay for any release costs, so additional money is needed to accelerate the release of samples to scientists. We're launching this Christmas Appeal because we want to:

-- Release our samples to researchers around the world, searching for the biomarkers of ME/CFS.

-- Ensure the long-term sustainability of the Biobank as a resource.


Any funds donated will be split between these aims, with collaborating research projects to be chosen by the UKMEB Guardian Board.

-- £10,000 would enable a further blood sample and data release,
-- £25,000 would enable the release of samples for two or three studies to be conducted,
-- £40,000 would sustain the UKMEB for 6 months in its entirety.
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Off to a good start with a very generous £500 (+ £125 Gift Aid!) donation towards the main £25,000 target. But as they say, even a quid could pay for a set of blood samples to be stored for a year. :)
 
http://cureme.lshtm.ac.uk/christmas-2017-fundraising-appeal/
"
Any funds donated will be split between these aims, with collaborating research projects to be chosen by the UKMEB Guardian Board.

— £10,000 would enable a further blood sample and data release,
— £25,000 would enable the release of samples for two or three studies to be conducted,
— £40,000 would sustain the UKMEB for 6 months in its entirety."

 
I've not donated to this before, but it does sound a sensible use of resources, and Jonathan Edwards was recommending donations. It's the sort of worthy project likely to lead to long-term benefits that I wish more people would donate to... okay, I've talked myself into it.

edit- can't do it now. When this thread next gets bumped I will.
 
Current total £8,195.25 out of a £25,000 target.

Latest Facebook post from them

"Our research nurse, Caroline Kingdon, celebrates her birthday today! Here is a clip from our meeting on Wednesday, featuring some dodgy singing from the CureME team...

We're still fundraising to keep Caroline visiting pwME into the future: https://www.justgiving.com/fundraising/ukmecfsbiobank"

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https://www.facebook.com/mecfsbiobank/videos/1604410739606363/
 
Researcher update with some (additional?) info on their supplementary work funded by the NIH.
-- Our collaborating researchers: Dr Jackie Cliff --

Dr Jackie Cliff is an Assistant Professor in Immunology, and our Laboratory Research Lead at The London School of Hygiene & Tropical Medicine.

Jackie has collaborated with us on our main NIH-funded grant, and also works on a connected subsidiary grant using UKMEB samples. Her expertise in immunology and genetic expression has been a great asset to the team and has yielded some promising results, for publication in 2018.

We have recently recruited 60 more participants for her subsidiary grant (also funded by the NIH), which will enable comprehensive assessments of cases of ME/CFS, using saliva and urine samples, at regular monthly intervals. This greatly enhances the chances of a breakthrough in the understanding of the pathophysiology of the disease.

Help make more studies possible and ensure the long-term sustainability of the Biobank - every donation is appreciated: https://www.justgiving.com/fundraising/ukmecfsbiobank
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https://www.facebook.com/mecfsbiobank/posts/1610366352344135
 
I’ve just shared the link on Facebook, which I never normally would do. Probably around half of my Facebook friends don’t know I’m ill- but I’m hoping one or two might donate. I’m going to donate for Xmas.
I’m not ashamed of being ill and I am sick of pretending I’m well just to fit in with what society expects.
Perhaps I’m turning into a grumpy old woman!
 
Daisybell said:
So no likes for my Facebook post, and no comments, and no donations.
I am invisible....
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Well, you're not invisible here. I'm sorry you didn't get any response, I very rarely get an obvious response whenever I share anything on Facebook, but I still think the effort will be worthwhile in the long run, as it helps to normalize ME. And the Biobank isn't an easy sell for donations, it isn't as compelling as donating to research.
 
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