HIV advocacy became vociferous before they got results. We need more not less posters. Some do not do us a service, that I do not dispute, but numbers are a huge part of being effective in advocacy. Its not just about the message. ME, and especially CFS, are not uncommon diagnoses. Yet most people are too sick to engage in advocacy. We need those numbers.
While I do not support some of the more, (ahem) boistrous posts to inaccurate newspaper articles, I do support the right of people to write them.
The other thing I question is readership. Physical newspapers have a defined demographic to some extent, but is this true online? People use search engines, so all demographics can be present on a website. So characterizing readership for a website, even a newspaper website, is problematic unless the research has been done. So aiming at a particularly demographic, online, is going to be problematic unless you are on a focussed forum like this one.
For the most part if someone claims to be well informed about ME or CFS and then writes a misleading article, its not very likely we are going to convince them because they probably already have a defined stance on the topic. Similarly people who read the material for shock value will not be reached. They are not there to learn, their purpose is entertainment. What about the others? The casual reader? The person who finds the article on a search? Other patients and advocates who might learn something? Online is not hardcopy, we are still learning the possibilities.
What I cannot decide though is if an email campaign against some site more legitimate like the MRC would be spamming, unethical or even immoral, or in what circumstances they would be one or the other. Its a murky area and I have not given it much thought. My stance generally is that posting to such places should be cool and rational, with reference to published peer reviewed science. What do others think? Keep in mind that a vociferous campaign is more about politics than science, and we are too disorganized for anything but sporadic involvement - we are definitely not an organized militant group - I can't even organize breakfast some days, and any militant tendencies I have are pretty well limited to computer games.
Bye, Alex