New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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How we can hijack the media, in four easy lessons

Discussion in 'Phoenix Rising Articles' started by Sasha, Jun 30, 2015.

  1. Sasha

    Sasha Fine, thank you

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    Sasha submitted a new blog post:

    How we can hijack the media, in four easy lessons

    Sasha explains how we can each help to make the most of big media stories about ME/CFS ...

    Love it, hate it, good story, bad story... the media are going to keep reporting on ME/CFS no matter what. But isn’t it time that we saw that coverage as an opportunity?


    [​IMG]

    I think we should, because when an ME/CFS story breaks, the doors open to getting responses to that story into the media. It’s our chance to get out our key messages, particularly:

    • scientific research shows that this is a devasting organic disease, not a psychological illness;
    • governments are underfunding serious research into this disease;
    • everyone should be donating to our biomedical research charities.

    In other words, every media story gives us a shot at getting the rest of the world to take our disease seriously and – hugely important – at growing our donor base for research funding. We need to reach outside of the established ME/CFS community and recruit more people.

    We know that there are some major good news stories coming down the pike – the latest rituximab study from Norway that confirms the striking results of the first, for example – and we need to be ready.

    So, what can we do?

    All right, Mr. DeMille, I’m ready for my close-up

    As individual patients, we can’t issue our own press releases: that’s for our organisations to do. But we can do the following...

    [​IMG]

    Comment online


    The major news outlets often allow comments on stories that are posted online, and there’s often a huge response to ME/CFS stories, as in the 537 comments posted on this article in the UK’s Daily Mail.

    There are some key things to remember when posting:

    • If it’s a good article, thank the journalist.
    • If it’s a bad article, say politely that you’re disappointed and refer to the research reports, and then use the opportunity to get your own points across. Don't be rude. We're trying to win people to our cause.
    • Stick to your key points. Want to say it’s a real disease? Cite the scientific reports. Want more funding? Name one or more of our biomedical research charities so that readers can find them, say that you have donated (social proof that this is the thing to do), and ask other people to donate to them too.
    • Add in some cold, hard, shocking facts.
    • Keep it short. People don’t read long stuff, or huge unbroken blocks of text. Bear in mind that Austin Kleon’s view of long messages is probably the same as most people’s. If you’ve got multiple points, do multiple posts.
    • Push the positive – present this as a solvable problem that the reader can help with. We just need the money and the political will! Researchers are raring to go!
    • Don’t rant. Dignity at all times. We’re all ambassadors for our disease. Think twice about posting when you’re angry: anger often doesn’t translate well online.
    • Do not feed the troll! We’re getting good at this. Don’t engage – just politely direct people to the latest research. Cite the IOM report or the P2P report. “I get tired too and I just suck it up – you’re all just a lazy bunch of scroungers” should be met with, “It’s important to distinguish between ME and just being chronically tired. ME has many other symptoms than fatigue, including neurological and immune symptoms, and is a serious, disabling multi-system disease, as demonstrated in research that has been summarised in the latest report from...” etc. etc. Play it like a rational adult and let the troll look like the stick-poking child that they are. Talk over their heads to your real audience and...
    • Always remember who your intended audience is. It isn’t trolls or people who are incapable of being convinced. We’re really addressing patients who might not be aware that our community exists and to the 99% of the general public who will be persuaded by good evidence. We want all of those people on board with us, advocating, educating others and donating to our charities.

    [​IMG]

    Write to the papers


    A big ME/CFS media story gives you a chance to write to the papers about it and get your points across. Top tips:
    • Keep it short. 300 words or less is best.
    • Get to the point. Editors cut for length from the bottom up, and readers get bored from the top down. Get your main points across in the first paragraph.
    • Make it relevant to a news story. “Dr Brilliant has just published research in Nature showing that...”
    • Make it local. For example, you could say, “Here in Anytown, over 200 people suffer from ME/CFS.” To get rough figures for your own paper’s area, multiply its population by 0.002 (or divide by 1,000 and multiply by 2).
    • Make it personal. It helps to get your letter accepted. But if you don’t want to say in the letter that you have ME/CFS for privacy reasons, use a phrase such as, ‘as anyone whose life has been touched by this disease knows’, or ‘having seen this disease close up’.
    • Don’t rant. It’s very unlikely that you’ll get published.
    • Give your full name, address, phone number, and e-mail address. Newspapers might withhold your name on request but they won't print anonymous letters. They may call you to confirm that you wrote the letter before they publish.

    Forward official press releases to the local media

    When a research group has a big finding, they generally issue a press release to national media but they’re unlikely to have the resources to contact local or overseas media. International press agencies might pick the story up and send it to these other media but patients can also help by forwarding the press release (if it has been published on the research group’s website) and forwarding it to their local media, and giving it some local context, saying that they’d be willing to be interviewed and so on.

    Offer yourself as an interviewee

    The media like stories to have a personal angle. Our charities often need people with ME/CFS who would be willing to be interviewed if a story breaks. If you’d be willing to do that, contact them now so that you’re on their books.

    So, lots of things that we can do. And we need to do them! We need to reach out, educate, include, advocate, excite, attract, and pull in research donations.

    This is going to be a good year for stories. Let’s make the most of it!


    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. We’d also love to expand our Board of Directors. So, if you think you can help in any way then please contact Mark through the Forums.

    And don’t forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.

    [​IMG]
    Continue reading the Original Blog Post
     
    Last edited by a moderator: Jun 30, 2015
    Comet, shannah, medfeb and 37 others like this.
  2. Sean

    Sean Senior Member

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    Excellent stuff, Sasha. Thanks. :thumbsup:
     
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  3. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Great suggestions, Sasha! I agree, it is in all of our best interests to do these things. We can all help to raise awareness and funds, even with a just few small actions from home. The cumulative effect of many small actions could be huge!

    Get ready, our opportunities are about to arise.

    Thanks for giving such clear, concrete suggestions. Nice work!
     
    Izola, Bob, Sasha and 1 other person like this.
  4. JaimeS

    JaimeS Senior Member

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    Great and entertaining, Sasha! I just wrote an article for chronic pain for a British publication, and I specifically wrote that exercise can help - EXCEPT if you have ME, in which it has been proven to worsen one's condition.

    Hey, anywhere you can put it out there...

    -J
     
    Izola, Bob, AndyPandy and 4 others like this.
  5. Aurator

    Aurator Senior Member

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    It's a great piece, Sasha. I agree particularly about the counter-productiveness of ranting or feeding the trolls.
    We're only human though, and if we don't get to kick people's but*s now, when will we get to kick them?
     
    Bob, SOC, ahmo and 2 others like this.
  6. Sasha

    Sasha Fine, thank you

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    You seem to have a small, evil twin whispering in tiny letters there... :eek::nervous:
     
    Izola, Hutan, Bob and 5 others like this.
  7. leela

    leela Slow But Hopeful

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    Excellent suggestions, Sasha. So clear and well thought-out. It's so helpful to have such a clear and precise overview.
     
    shannah, Izola, Never Give Up and 2 others like this.
  8. Bob

    Bob

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    Great article, thanks so much Sasha. I will find this very useful to refer back to. :thumbsup:
     
    shannah, Izola, Never Give Up and 2 others like this.
  9. Hope123

    Hope123 Senior Member

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    Great points, Sasha! I would also add:

    (1) Pretend you're the average person who doesn't know much about ME/CFS and might even hold misconceptions about it. What would catch your eye or change your mind?

    (2) Don't wait for media to write a story. If there is an article that touches on issues that might be related to ME/CFS but isn't exactly about it, comment anyway. E.g. for an article about how women's health funding is neglected, say something like "I agree. For example, there is an illness called ME/CFS that affects a lot of women but is underfunded............" Be creative.

    (3) Register to comment in the NY Times, Wall Street Journal, or other major outlets. For the NY Times, even if your comment is not an editor's pick or favorited by a lot of people, influential folks do read them and I have had the interesting experience of making comments (not ME/CFS related unfortunately) and lo and behold, having a reporter do a piece related to it a week later or seeing policy related to it changed. It's likely I'm not the first person to bring it up a particular point but perhaps seeing it along with other might have tipped someone to action.

    (4) Don't forget that smaller media outlets can be valuable. All politics is local and so is media. Write to your local neighborhood paper or a specialized magazine and it's more likely to be paid attention to or published.
     
    Dolphin, Anne, ahmo and 2 others like this.
  10. Hope123

    Hope123 Senior Member

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    Forgot to add to point 4 above: Smaller outlets that receive less letters might be more likely to print something even if it's unrelated to anything they've written. For example, come May, one could simply write about ME/CFS awareness day.
     
    Dolphin, Izola, Never Give Up and 2 others like this.
  11. Anne

    Anne Senior Member

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    A question for Sasha and all of you:

    If a journalist is interested in writing about ME/CFS and asks for a recommendation of 2 - 3 web sites with good information about ME/CFS, which ones would you recommend?
     
    Izola, mango and Helen like this.
  12. eafw

    eafw Senior Member

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    What aspect are they writing about and what level of info do they want ?

    Invest in ME has a resources page with a lot of information there, probably more than is needed for just one article, but it depends how much background reading they want to do.

    http://www.investinme.org/InfoCentrehome.htm
     
  13. Anne

    Anne Senior Member

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    They are writing a general article (non-scientific), so the information requested is:

    a) General information about ME/CFS

    b) The history of ME/CFS

    What I would like to send is links to two or three web sites with a good overview of ME/CFS. But I want them to:
    - have a solid biomedical perspective
    - emphasize PEM as the core symptom
    - be from a trusted source, the more official the better

    So official sites - such as universities, institutions, medical associations, etc - would be the best, but without any desinformation (such as CBT/GET). Does that exist?

    @Sasha @Simon @Bob @eafw and others
     
    mango likes this.
  14. Bob

    Bob

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    It's a good question. And I think we should have a handy list of some good basic information sources that we can give to journalists. But i don't know what to recommend. I'm not sure if there is a website that has a good basic overview, but is not woolly when it comes getting the facts right, and also includes info re the latest biomedical research. If there is, I'd like to know about it. Sorry I can't be more help Anne - I hope someone can find such a website for you.
     
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  15. eafw

    eafw Senior Member

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    The Invest in ME website meets the first criteria, don't know whether it would be considered official enough to match the third. The only problem with the link to IiME that I gave above is that there is so much information there, so to an extent you need to know what youre looking for to start with.

    There is always the IOM report (suprisingly readable), or as another alternative some of the video presentations that have been done by reserchers and practitioners.

    Both Lenny Jason and Julia Newton have some good ones.

    Bear with me and I'll find some links later, unless someone else digs them out first
     
    Anne and Valentijn like this.
  16. Sasha

    Sasha Fine, thank you

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    I've been looking lately for exactly what you want lately, @Anne, and I'm not sure that any of our charities have really got what we need, and it's a real gap in the market.

    IiME are a small charity that focuses its resources on research and unfortunately the current look of their site might not inspire confidence in a journalist (I don't think that's where IiME's focus is) and I agree with eafw that you'd need to know what you're looking for to find it on that site.

    The MEA and MERUK have some stuff but perhaps it's not as sharp as it could be and doesn't cover all the bases.

    No offence intended to the charities - it's not an easy thing to produce that kind of content and they've got plenty of other things on their plates.
     
    Anne likes this.
  17. eafw

    eafw Senior Member

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    Various documents from IOM report can be accessed at this link, the "Key Facts" document is a good summary

    http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx

    http://iom.nationalacademies.org/~/media/Files/Report Files/2015/MECFS/MECFS_KeyFacts.pdf


    This is a video which gives history, background and some of the social issues involved. Lots of good quotes in there.




    These are the Julia Newton ones, bit more detail on the clinical aspects but worth sticking with for the information.

    http://www.meassociation.org.uk/2014/08/19791/

    It should take less than two hours for someone to go through these and it should serve as a bit of a primer at least, and all from reputable sources.
     
    ahimsa likes this.
  18. Sasha

    Sasha Fine, thank you

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    Nice find, but two hours...:eek:

    We need some more concise stuff, that's for sure!
     
  19. eafw

    eafw Senior Member

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    Journos need to learn to do their homework !

    Yes, it would be useful to have some handouts and instant soundbites too.
     
    Sasha likes this.
  20. ahmo

    ahmo Senior Member

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    @MeSci @SickOfSickness Do you have references, summaries useful here?
     

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