Monday, 2 July 2012

Grand Challenges in MS (1): education

It appears that the grandest of all challenges in MS research is education; i.e. getting Researchers and MSers to agree on the unmet needs in the field across all stages of the disease. For example, convincing someone with progressive MS of the importance of prevention, making researchers understand the needs of progressive MSers sand importantly getting the reviewers' and funders' of research to understand the why.  


"We have just received the reviewer's comments back from our MRC grant application that involved the repurposing of an anti-viral drug to target EBV in RRMS; I have never had such a dichotomy in opinion in relation to a grant before. The scores wither clustered at the top or bottom end of the scale regarding innovation and international competitiveness. Why? In other words some reviewer's were behind us and wanted the MRC to fund this study, whilst others thought the idea that EBV could be driving MS disease activity to be a worn-out idea that is irrelevant. The problem as I see it is one of poor communication and education; we obviously did not do enough ground work to prepare the field for the hypothesis that underpinned our grant."

"Scientists would hate to admit it but a lot of science, and in particular science funding, is a social science!"

"We are not going to let the rejection get us down. We have picked ourselves up, dusted off our keyboards and have started again. At the heart of our next grant submission will be an international education campaign to make the world realise that we may be onto something when we say EBV is the cause of MS."


"Education, education, education..." Tony Blair, British Prime Minister, 1997.

14 comments:

  1. Could you do a post on why some experts think the EBV idea is irrelevant.
    What are their arguments?

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  2. Re education about EBV - lots needs to be done to counteract prejudice. In the wider world, it seems to me, this idea is perceived either as outdated or not that credible. Some researchers are not immune to that either.

    I first heard about EBV+MS from my alternative "healer" because in that community it is fashionable to bash all vaccinations and all is down to viruses. So my first reaction to EBV was disbelief/rejection.

    The line you said in Ireland Prof G "it's an UNCOMMON manifestation of a common exposure" is very good - you need to back it up stronger with examples of other diseases IMHO.

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  3. why some experts think the EBV idea is irrelevant.

    Their heads are in a dark place:-)

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  4. Does the drug work in glandular fever
    which is known to be caused by EBV

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  5. Re: "Does the drug work in glandular fever which is known to be caused by EBV."

    Glandular fever occurs as a result of an overactive immune response to the virus. There are no licensed drugs that target glandular fever.

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  6. Nice to hear you started again, but it's depressing. The process is going to take so long and after all that the trial may fail

    Two songs for the charcot project:
    http://www.youtube.com/watch?v=3EFPJL1uQbs
    http://www.youtube.com/watch?v=6GdeU0ww4zY

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  7. Ever thought of using kickstarter or something similar to fund research?

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  8. 'others thought the idea that EBV could be driving MS disease activity to be a worn-out idea that is irrelevant.' Surely that's pre judging the outcome of the trial?

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  9. Re: "Surely that's pre judging the outcome of the trial?"

    Welcome to the world of peer review.

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  10. Re: "Ever thought of using kickstarter or something similar to fund research?"

    Crowd sourcing would be great, but it bypasses the peer-review process that is meant to ensure that everything is above board and ethical. I say this knowing that a lot of research in the US is funded by direct philanthropy and the work is never scrutinised via peer-review.

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  11. Re prejudging - some amount is necessary, right? Since they can't fund every idea in the world

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  12. Re: "...ensure that everything is above board and ethical."

    Then explain how Tysabri has been approved (PML)!

    xD

    But where is the link between funding and peer-review?
    Peer-review is (maybe not the best) but an important process.

    Peer-review in wikipedia style maybe?

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  13. Re: "Then explain how Tysabri has been approved (PML)!"

    Natalizumab was approved in the US before and the EU after the PML scare. It was licensed because it is an effective drug and in some MSers the risk of getting PML is worth taking. You have to remember that MS is a bad disease and if you have failed IFNbeta and GA, natalizumab is a good option. In addition the risk of PML in the JCV-ve group is low; < 1 in 10,000.

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  14. Re: "But where is the link between funding and peer-review? Peer-review is (maybe not the best) but an important process."

    We have to have studies peer-reviewed to get our Institution to sponsor them, i.e. to make sure that they are valid and above board. For example, we would have difficulty doing a CCSVI study in the UK that had not been funded via a peer-reviewed competitive grant process. The peer-review process provides checks and balances to make sure the science is right.

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