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…
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.
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!