≡ Menu

How we can hijack the media, in four easy lessons

newspapers-444444_640Sasha 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?

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…

typing-690856_640Comment 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.

news-760984_640Write 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!

'I was completely lost and in the dark before I found this website. I can never express what this place means to me.' Phoenix Rising forum member

{ 33 comments… add one }

  • Sean June 30, 2015, 7:48 pm

    Excellent stuff, Sasha. Thanks. :thumbsup:

  • Never Give Up June 30, 2015, 11:54 pm

    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!

  • JaimeS July 1, 2015, 8:23 am

    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

  • Aurator July 1, 2015, 9:16 am

    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?

  • Sasha July 1, 2015, 9:21 am
    Aurator

    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?

    You seem to have a small, evil twin whispering in tiny letters there… :eek::nervous:

  • leela July 1, 2015, 4:11 pm

    Excellent suggestions, Sasha. So clear and well thought-out. It's so helpful to have such a clear and precise overview.

  • Bob July 2, 2015, 3:48 am

    Great article, thanks so much Sasha. I will find this very useful to refer back to. :thumbsup:

  • Hope123 July 8, 2015, 3:28 am

    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.

  • Hope123 July 8, 2015, 3:29 am

    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.

  • Anne July 19, 2015, 4:39 am

    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?

  • eafw July 19, 2015, 8:26 am
    Anne

    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?

    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

  • Anne July 20, 2015, 1:58 am
    eafw

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

    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

  • Bob July 20, 2015, 2:43 am
    Anne

    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?

    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.

  • eafw July 20, 2015, 5:16 am
    Anne

    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

    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

  • Sasha July 20, 2015, 5:25 am

    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.

  • eafw July 20, 2015, 11:43 am

    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.

  • Sasha July 20, 2015, 11:50 am

    Nice find, but two hours…:eek:

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

  • eafw July 20, 2015, 12:04 pm
    Sasha

    Nice find, but two hours…

    Journos need to learn to do their homework !

    Sasha

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

    Yes, it would be useful to have some handouts and instant soundbites too.

  • ahmo July 20, 2015, 1:55 pm
    Anne

    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?

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

  • SickOfSickness July 20, 2015, 2:06 pm

    If these are not already posted:

    The ME/CFS Primer written for medical professionals. http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf

    The ICC Primer. This is older and not as good, but it's easier to understand. http://www.cfs-ireland.com/ICC primer.pdf

  • MeSci July 21, 2015, 2:02 am
    ahmo

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

    I will post them if they occur to me, but can't commit to anything due to needing to prioritise self-employed work and other essential activities. I can only post when I'm resting between activities or when it's raining (I sell plants).

  • Anne July 21, 2015, 4:19 am
    SickOfSickness

    If these are not already posted:

    The ME/CFS Primer written for medical professionals. http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf

    Yes, the IACFS/ME Primer is excellent!

  • Anne July 21, 2015, 4:21 am

    Here's what I've found so far:

    The IACFS/ME Primer, written for medical professionals
    http://iacfsme.org/portals/0/pdf/Primer_Post_2014_conference.pdf

    Stanford ME/CFS Initiative: What is ME/CFS?
    http://med.stanford.edu/chronicfatiguesyndrome/overview.html

    Open Medicine Foundation: What is ME/CFS?
    http://www.openmedicinefoundation.org/what-is-mecfs/

    Columbia: Center for Infection and Immunity: ME/CFS
    http://cii.columbia.edu/research.aspx?8Fo92f

    Bateman Horne Center: ME/CFS
    https://www.batemanhornecenter.org/symptoms-of-me-cfs/

    The Microbe Discovery Project: About ME/CFS
    http://www.microbediscovery.org/aboutmecfs.html

  • BurnA September 6, 2015, 9:08 am

    Sasha,
    Great article. Might I add one further idea …
    Most of the standard 'medical' websites ( the ones that appear in the top of google searches for any medical issue ) have no or almost no reference to the potential benefits of rituximab and ME/CFS being an immune disease. ( EG the Mayo clinic lists virus and psycological stress as the potential causes ) Is there a way to get these websites to update themselves ? I think this would be very beneficial as this is a resource a lot of poeple ( including lazy journalists ) go to to find out about a disease.

    Maybe we could start a campaign to target certain websites ?

  • Sasha September 6, 2015, 9:38 am
    BurnA

    Sasha,
    Great article. Might I add one further idea …
    Most of the standard 'medical' websites ( the ones that appear in the top of google searches for any medical issue ) have no or almost no reference to the potential benefits of rituximab and ME/CFS being an immune disease. ( EG the Mayo clinic lists virus and psycological stress as the potential causes ) Is there a way to get these websites to update themselves ? I think this would be very beneficial as this is a resource a lot of poeple ( including lazy journalists ) go to to find out about a disease.

    Maybe we could start a campaign to target certain websites ?

    That's out of the scope of "hijacking the media" but I agree that if there are sites with outdated info – or info that's just plain wrong – then it would be good to get them fixed. I think that that kind of thing would best come from a charity so that the organisation would trust the information: but individual patients could help a charity draft up an appropriate letter and get some good info together.

    You might want to start a fresh thread for that if that's an idea that you want to discuss more – people won't find it here. :)

  • BurnA September 6, 2015, 9:49 am
    Sasha

    That's out of the scope of "hijacking the media" but I agree that if there are sites with outdated info – or info that's just plain wrong – then it would be good to get them fixed. I think that that kind of thing would best come from a charity so that the organisation would trust the information: but individual patients could help a charity draft up an appropriate letter and get some good info together.

    You might want to start a fresh thread for that if that's an idea that you want to discuss more – people won't find it here. :)

    OK thanks, i thought in a way it might fall under hjacking the media, but maybe theres a better title…i cant think of it but suggestions welcome!

  • Sasha September 6, 2015, 11:13 am
    BurnA

    OK thanks, i thought in a way it might fall under hjacking the media, but maybe theres a better title…i cant think of it but suggestions welcome!

    The "media" generally mean where transitory news stories appear such as newspapers, radio, TV, magazines, etc. rather than a website's static pages.

    How about: "What can we do to get medical websites to provide better information about ME/CFS?" or something like that?

  • BurnA September 8, 2015, 2:13 pm
    Sasha

    How about: "What can we do to get medical websites to provide better information about ME/CFS?" or something like that?

    I think that's a great title ! In fact it's so good I would feel bad about taking it so I think you should set up a new thread :)

  • Sasha September 8, 2015, 2:19 pm
    BurnA

    I think that's a great title ! In fact it's so good I would feel bad about taking it so I think you should set up a new thread :)

    Well, no, it's your project! The title's all yours. :)

  • taniaaust1 September 11, 2015, 8:39 am
    eafw

    Journos need to learn to do their homework !

    They usually don't though now days. They just tend to steel things from each other and rewrite them slightly. Have you noticed that if a story breaks somewhere, it will then start quickly breaking everywhere else, often with indentical quotes etc in the articles.

    For us to get in news publications, we need to put the info right in front of their noses.

    Great article Sasha.

  • Nico October 15, 2015, 3:34 pm

    Really great Sasha! Thanks for this.

  • Never Give Up October 15, 2015, 10:31 pm

    Hey, @Sasha, Tom Kindlon has put a link to your article on Facebook. It's a good one.

  • Sasha October 16, 2015, 1:22 am
    Never Give Up

    Hey, @Sasha, Tom Kindlon has put a link to your article on Facebook. It's a good one.

    Thank you, @Tom Kindlon! This is a good skill that our whole community needs to have – thanks for spreading the word. :thumbsup: