NIH awards £1m grant to UK Biobank

Firestormm

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Bloody marvelous news!! Made my damned day :) Lots of people worked hard to get this one. Thank the gods they finally announced :)

Have been afforded permission to publish an article on both the UK Biobank and ME Registry which I am working on and it should be out in the next couple of weeks. Will be hoping to include interviews with those involved.

Ha! Who would have thought this could happen. International cooperation on this scale - got to be a first for ME Research :balloons: Smiles all around methinks :)

Thanks for catching this one John - my spider-senses are clearly not working today!
 

Sasha

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Bloody marvelous news!! Made my damned day :) Lots of people worked hard to get this one. Thank the gods they finally announced :)

Have been afforded permission to publish an article on both the UK Biobank and ME Registry which I am working on and it should be out in the next couple of weeks. Will be hoping to include interviews with those involved.

Ha! Who would have thought this could happen. International cooperation on this scale - got to be a first for ME Research :balloons: Smiles all around methinks :)

Thanks for catching this one John - my spider-senses are clearly not working today!

That's great - I'll look forward to that article - and it's a good example of the kind of stuff that the MEA and MERUK work on. Worth our votes in the current Direct Debit contest and we can all vote for both, with either a Facebook or Google account:

https://www.directdebit.co.uk/TheBigBreak/100GoodCauses/Pages/CauseDetail.aspx?CauseId=1404
https://www.directdebit.co.uk/TheBigBreak/100GoodCauses/Pages/CauseDetail.aspx?CauseId=1955
 

Firestormm

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That's great - I'll look forward to that article - and it's a good example of the kind of stuff that the MEA and MERUK work on. Worth our votes in the current Direct Debit contest and we can all vote for both, with either a Facebook or Google account:

https://www.directdebit.co.uk/TheBigBreak/100GoodCauses/Pages/CauseDetail.aspx?CauseId=1404
https://www.directdebit.co.uk/TheBigBreak/100GoodCauses/Pages/CauseDetail.aspx?CauseId=1955
I saw from Mark's newsletter that the MEA were only 3 votes outside of the top 10. Anyone in the Top 10 of course gets some dosh - doesn't take much effort so hit the darned button peeps :)
 

maryb

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I'm not disagreeing its fantastic news that this has been funded but anything to do with with AfMe.......... and which criteria do NHS primary care trusts use?? Oxford?
Its all down to the quality of the samples. I deperately hope they got the right ones.
 

Firestormm

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Sonya Chowdhury, Chief Executive of Action for M.E., said,

“This is fantastic news and another major step forward in an already exciting time for research into M.E. It is great to see that Action for M.E.’s investment in this research project has now attracted mainstream funding. It demonstrates the potential that collaboration and co-funding can achieve.

“International recognition and support such as this emphasises the importance of the Biobank in providing an essential resource for those engaged in bio-medical research into M.E. throughout the world. It will enable the Biobank to expand and increase the chances of significant breakthroughs.”
Must give equal exposure to another of the main funding partners in this venture ;)

One of the points that caught my eye and may not be known about by all concerned was:

Dr Eliana Lacerda from the London School of Hygiene & Tropical Medicine, one of the lead researchers on the project, said:
“At least one in every 500 adults in the UK is affected by ME/CFS at any one time, as well as a smaller but significant proportion of children. The NIH grant provides a huge boost to the Biobank, which will enable more research into the causes of ME/CFS and ultimately help those affected.”​
Erinna Bowman, one of the project researchers, said:
“A key component of our project is its longitudinal design, which includes participant follow-ups over an extended period of time. This longitudinal aspect makes the Biobank an even more valuable resource and presents new opportunities for scientific discovery in the years to come.”
The London School of Hygiene & Tropical Medicine is home to a dedicated research group working on research into ME/CFS.
This is something that I think has been sadly lacking in study of our diagnosis. Great to see them taking it on. Will try to find more detail for the article but if anyone else has something - perhaps they would post here? Thanks.

Good to see a more realistic (if I may use that word) prevalence rate stated in a press release for a change.
 

Firestormm

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I'm not disagreeing its fantastic news that this has been funded but anything to do with with AfMe.......... and which criteria do NHS primary care trusts use?? Oxford?
Its all down to the quality of the samples. I deperately hope they got the right ones.
Fukuda and Canadian I believe, Mary. Will try and find you a source for that later. See above for AFME. Need to grab some rest although I really don't want to :)
 

Firestormm

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I'm not disagreeing its fantastic news that this has been funded but anything to do with with AfMe.......... and which criteria do NHS primary care trusts use?? Oxford?
Its all down to the quality of the samples. I deperately hope they got the right ones.
Found it! Check this out. March 2013 from AFME Q&A. It's a full explanation of what is and isn't accepted and the tests etc. completed. I can't copy and paste unfortunately but see answer to question 5. As the project is endorsed by three charities including MEA and ME Research UK I am more confident that they are collecting as good as samples as they can but others will not agree I am sure. C'est la vie. :)
 

user9876

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I'm not disagreeing its fantastic news that this has been funded but anything to do with with AfMe.......... and which criteria do NHS primary care trusts use?? Oxford?
Its all down to the quality of the samples. I deperately hope they got the right ones.
I would hope that as part of the Bio bank they are recording detailed symptoms and blood test results etc. If they have sufficient samples along with detailed diagnostic information then this can be used in selecting samples for any analysis.

If they have sufficient storage space I would be in favour of wide criteria (but with a strong differencial diagnosis process - to remove those with other diseases) but where their is sufficient information to pick and choose for different criteria or more interestingly to pick different groups of symptom and compare samples between these groups.

Given the longitudinal nature of the biobank I think they should also be periodically recording symptom changes over time.
 

Firestormm

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I would hope that as part of the Bio bank they are recording detailed symptoms and blood test results etc. If they have sufficient samples along with detailed diagnostic information then this can be used in selecting samples for any analysis.

If they have sufficient storage space I would be in favour of wide criteria (but with a strong differencial diagnosis process - to remove those with other diseases) but where their is sufficient information to pick and choose for different criteria or more interestingly to pick different groups of symptom and compare samples between these groups.

Given the longitudinal nature of the biobank I think they should also be periodically recording symptom changes over time.
I think the Q&A I posted just before you commented, user will help with your concerns. I need to try and better understand the nature of the longitudinal study - what the process is and aims are precisely. I don't know much more than is on the links already posted.
 

Firestormm

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Dr Shepherd of the MEA is answering questions on their Facebook page if anyone wants to ask for more detail. His last comment was:

The MRC, Professor Stephen Holgate in particular, has been very supportive 'behind the scenes' in helping with the enormous amount of preparatory work that has been involved in setting up the ME Biobank at UCL. This is the first application for funds to support a specific research project - in this case it will involve a longitudinal study involving virology, immunology and genetics. It was decided to apply for a major NIH grant and the application was successful.
bit more from Charles:

Each blood sample comes with a bar coded list of clinical information, examination findings and blood test results - well in excess of what is normally carried out for routine clinical assessment of people with ME/CFS. As a result it can be deduced which people meet with Fukuda CFS criteria and/or Canadian criteria. If appropriate, the clinical data is there to carry out further sub-grouping.
One of the aims of the NIH funded study, as well as setting up the ME Biobank, is to find diagnostic biomarkers and biomarkers that will help with sub-grouping under the ME/CFS umbrella.
 

snowathlete

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I was diagnosed originally by the NHS - Fukuda criteria back then. Probably the same now.

I think this is really good news. Hopefully people can see that these UK charties do do good work, and do make a difference in a country that treats ME/CFS like a joke. So, hopefully people will start supporting them in competitions and things because not doing so only hurts us, the patients!
 
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Wow - that's great news and also a bit weird! What is the US NIH doing funding a UK biobank? Have I misunderstood this?
The US NIH funds projects that are potentially in US interests. Given similar demographics, it is not uncommon for the NIH to fund studies in Australia (eg the Dubbo epidemiological study) or the UK.
 

Sasha

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The US NIH funds projects that are potentially in US interests. Given similar demographics, it is not uncommon for the NIH to fund studies in Australia (eg the Dubbo epidemiological study) or the UK.

That's interesting - I didn't know that. But it's still kind of weird that their funding rate for US researchers' proposals appears to be about 6% and they're turning down the likes of Nancy Klimas etc. who get funded in their other research areas and so are clearly top-notch. Jennie Spotila calculated the NIH's effective spend on ME last year to have been about $3 million or $4 million - and here's a quarter of that going on a UK study.