The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research pr

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Oct 3, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    Wonkmonk, zzz, mermaid and 83 others like this.
  2. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    That is fantastic news. Thank you @charles shepherd and to all concerned in the biobank and the research.
     
  3. Molly98

    Molly98 Senior Member

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  4. Cheshire

    Cheshire Senior Member

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    Great news!

    Can MEGA survive this?
     
  5. adreno

    adreno PR activist

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    Great news! Congratulations to everyone involved.
     
  6. Hutan

    Hutan Kina solidarity

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    Fantastic news. Yaay NIH! And the Biobank team!

    Yes
     
    alkt, ladycatlover, Solstice and 27 others like this.
  7. Countrygirl

    Countrygirl I'm with Cheesus

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    :thumbsup:

    :trophy:------------------------> awarded to Dr Charles Shepherd

    :)
     
    zzz, ladycatlover, Solstice and 26 others like this.
  8. lilpink

    lilpink Senior Member

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    This seems to be good news, 'the Brazilians' being a safe pair of hands. I agree with @Cheshire that this must add to the limitations placed on MEGA ever getting the 'go ahead'. What would be the point?
     
  9. boolybooly

    boolybooly

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    I dont know but I would hope maybe MEGA can use this.

    I would guess the NIH funded this with a collaborative perspective, to make it an international facillity which both enables and reduces the cost of other research projects, which I would hope could include MEGA.
     
    ladycatlover likes this.
  10. Chezboo

    Chezboo NOT MY BOARD

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    Wow! fantastic news! :balloons::star::balloons:
     
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  11. Hilary

    Hilary Senior Member

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    Fantastic news!! Huge thanks to all involved - though as CS says, ironic that the funding is coming from outside the UK. Time the UK medical establishment woke up, got its act together and caught up - still far, far too much mistreatment, misunderstanding and total neglect of patients.
     
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  12. Demepivo

    Demepivo Dolores Abernathy

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    MEGA is effectively dead with this news. The UK Biobank uses the right criteria & people...Why would you want Esther Crawley involved?!?!?
     
  13. lilpink

    lilpink Senior Member

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    I certainly hope not. Why sully this with MEGA? It would be absurd imo.
     
  14. lilpink

    lilpink Senior Member

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    I do think the Biobank team should be encouraged to add ICC criteria to their list. This seems to be the preferred criteria for patients internationally.
     
  15. Skycloud

    Skycloud Senior Member

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    Fantastic - good news for all of us!
     
    Last edited: Oct 3, 2017
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  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    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.
     
  17. Rossy191276

    Rossy191276

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    This is probably an ignorant question but is there a way we can contribute to the biobank by providing samples such as blood? What samples do they need and how do they get them? As a severe patient I would love to be able to contribute to helping build a base for research that supports severe cases...
     
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  18. charles shepherd

    charles shepherd Senior Member

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    Thanks for the very kind offer!

    The ME Biobank does not require any more blood samples at the moment

    When we do, there will be an announcement on:

    - the ME Biobank website: http://cureme.lshtm.ac.uk

    - the MEA website: www.meassociation.org.uk

    - and the MEA Facebook page

    And I'm sure this information will filter across onto PR as well

    Please note that there are geographical limits to the locations from where we are recruiting blood donation volunteers at present because of the need to:

    (1) carry out a clinical assessment of everyone who dontates a sample to make sure they have a sound diagnosis of ME/CFS

    (2) arrange home visits for collection of blood from people with severe ME/CFS - who form an important cohort at the ME Biobank

    (e) transport the blood samples as quickly as possible after collection to the ME Biobank at the Royal Free Hospital in London

    So we cannot collect samples from outside the UK and I don't think anyone has managed to set up an ME Biobank in Australia so far….

    Dr Charles Shepherd
     
  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The generosity of patients is very much appreciated by researchers. However, there are very real problems with voluntary donations.

    Imagine that ten Norwegians volunteered to donate to the UK Biobank. A year later a paper appears in Nature showing that people with ME are more likely to carry gene RjXC779. A million dollar grant is obtained to study this gene and another two years later it is discovered that RjXC779 is a Viking gene for straight blond hair. Even taking Welsh and Scottish patients with controls from Norfolk runs this risk and the risk is particularly high if people are doing genome wide screening studies. Antibodies to different infections will be different in Scotland and Australia from Norfolk, etc.. Population based controls are so important.

    But donations aren't biased!
     
  20. Barry53

    Barry53 Senior Member

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    Be interesting to see if the SMC manage to report this at all, and if so what kind of spin there might be on it. Not exactly insignificant news is it, important UK research being funded by an American government institution ... everyone should be over the moon you might imagine. Can the SMC actually afford not to report this, if they are to retain any sort of credibility amongst the wider scientific community at all? Especially as cracks seem to be appearing in the SMCs facade/charade of impecable investigative scientific journalism :vomit:.
     

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