When a news story about ME/CFS appears online and allows comments, it’s our chance to get important information into the media, to raise awareness about our disease and to encourage people to donate to our biomedical research charities.
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 that you’re disappointed and refer to the research reports, and then use the opportunity to get your own points across. Always be polite: we want to recruit more supporters.
- Stick to your key points. Want to say it’s a real disease? Cite the IOM and P2P reports or the strong scientific evidence that convinces you. Want more funding? Name the most relevant biomedical research charities and say that you have donated to them (social proof that this is the thing to do), and ask people to donate to them too.
- Add in some cold, hard, shocking facts.
- If you give a web address in your comment, it might be automatically blocked. If this happens, try using the format “www[dot]website[dot]com”.
- 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! Don’t engage – just politely direct people to the latest research. Again, cite the IOM and P2P reports. “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. This has been demonstrated in research 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 talking to 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.