A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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A friendly list of definitions for journalists?

Discussion in 'Advocacy Projects' started by Luther Blissett, May 10, 2016.

  1. Luther Blissett

    Luther Blissett Senior Member

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    Yorkshire, England
    Inspired by a quote from @alex3619
    Would it be possible to create a list of definitions with sources that could be sent to the media to accompany further announcements from the BPS school?

    It could help us if the journalists care at all about the power of words, and may get their interest more quickly than a long list of published papers.
     
  2. alex3619

    alex3619 Senior Member

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    I once proposed we establish our own global media center for ME and probably related diseases. We need that to counter misinformation, especially misinformation propagated by public relations methods.

    I was going to write a detailed blog on this, but then I wound up in hospital and ever since my cognition has declined, so I no longer do critical analytical thinking like I used to. I think we would benefit from opening these ideas up to wide engagement from the community. Many brains are usually much better than one.

    Once we have such a center our charities can all be informed, and we can broadcast widely to advocates. We can then promote it to media using grass roots promotion. That is people in an area will promote it to local media.

    This could be established by any large CFS or ME charity, though ideally it would be from a coalition of groups. It could be used by everyone. We acknowledge disagreement between different views, rather than debate it on the site. Its not about debating issues. Its about promoting them.

    All our charities, groups and researchers can then write to this site, particularly in response to bad information in the media. Individual advocates are the question here - I think they should also be able to write pieces, but places separately. Indeed, charity, researcher, group and individual responses might go in different subsections, so that journalists can find what they need quickly.

    This is how we can establish our own public relations organization. The internet makes this possible.
     
  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    Might #MEAction be a starting place for a platform?
    I am also cognitively disabled so can be of no help. MEAction is already in place but it would probably require more funding and more help.
    The wiki they have might also help journalists.
     
  4. alex3619

    alex3619 Senior Member

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    I am not sure that ME Action would be a good choice. They could use such a site to promote things. However, for credibility with journalists, such as site must be largely agnostic as to particular views, no matter how justified those views are. That is in part why I suggest we should open it up to all neuroimmune diseases, including MS, at least in the long run. To start with we would need a tighter focus.
     
    Justin30 and Snowdrop like this.
  5. aaron_c

    aaron_c Senior Member

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    @alex3619 Is there an example of something like this already out there?
     
  6. alex3619

    alex3619 Senior Member

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    Not charity run that I am aware of. There are commercial and "independent" sites like the Science Media Center which has had some very negative press about it. As we know these people are not just reporting science news in a balanced fashion but have, by the own admission, at least an occasional agenda.

    I see this as an interactive website, eventually multinational. I see the primary audience as journalists, though it should be open to everyone. There is too much misinformation, and debate, and while its important to show all sides of a debate we need a neutral place where scientists, charities and so on can post their commentaries and replies. I suspect it would be fairly content light in itself, at least to start with, because the best use of it would be to coordinate and list links to high quality information, topic by topic, from many other sites around the world.

    For example, suppose a new paper comes out, and it has a lot of problems, we could centralize a topic page for it and then list links to commentary (or original commentary) by scientists, doctors, charity based advocates, and independent advocates, and even a section for general comment that is separated from the rest. This is so a scientific post wont get swamped by huge numbers of passionate patient comments. However keeping a link to such comments is good too because a journalist could then find human interest stories. So telling stories that relate to the current topic could have a major impact.
     
    Mark likes this.

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