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NIH awards £1m grant to UK Biobank

Discussion in 'General ME/CFS News' started by John Mac, Jun 28, 2013.

  1. John Mac

    John Mac

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  2. maryb

    maryb iherb code TAK122

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    Anyone know the criteria the patients were assessed by?
    snowathlete likes this.
  3. Sasha

    Sasha Fine, thank you

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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?
    SpecialK82, SOC and Nielk like this.
  4. Sasha

    Sasha Fine, thank you

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    If they're talking 1 per 500 = 0.2% it's going to be tight criteria - I trust the charities behind this to get it right.
  5. Sasha

    Sasha Fine, thank you

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  6. Sasha

    Sasha Fine, thank you

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  7. Sasha

    Sasha Fine, thank you

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  8. Firestormm

    Firestormm Senior Member

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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!
  9. Sasha

    Sasha Fine, thank you

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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
    Firestormm likes this.
  10. Firestormm

    Firestormm Senior Member

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    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 :)
    snowathlete and Sasha like this.
  11. maryb

    maryb iherb code TAK122

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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.
  12. Firestormm

    Firestormm Senior Member

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    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:

    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.
    Sasha likes this.
  13. Firestormm

    Firestormm Senior Member

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    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 :)
  14. Firestormm

    Firestormm Senior Member

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    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. :)
  15. user9876

    user9876 Senior Member

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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.
    biophile likes this.
  16. Firestormm

    Firestormm Senior Member

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    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.
    user9876 likes this.
  17. Firestormm

    Firestormm Senior Member

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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:

    bit more from Charles:

    user9876 and Simon like this.
  18. snowathlete

    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!
    Battery Muncher and Firestormm like this.
  19. Snow Leopard

    Snow Leopard Senior Member

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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.
    Battery Muncher, Firestormm and Sasha like this.
  20. Sasha

    Sasha Fine, thank you

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    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.

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