HI All
I know this had been discussed on another thread but I hadn't realised it had started until 50 odd posts in. Magnificent work everyone.
Unfortunately I have little to offer except, as I stated in another thread, I've been through this before having been a founder member of frenchhealthissues (FHI)
http://www.frenchhealthissues.eu/default.htm
The site is now archived as we were almost 100% successful in persuading the French government to reverse plans to retrospectively change the law relating to residency and access to health care. I include the link only as an example of website content.
Some things that we found important :
The founder members were all volunteers but it was necessary/sensible to assign roles and responsibilities depending on capabilities and at times to seek further volunteers from outside the core group e.g. for translations, another pair of hands etc.
A website is fine but has a tendency to appear static unless there is provision for interaction and regular updating. As has been said, one strength we have is that we all have a story to tell. The FHI site had a facility to contact by webmail where people could tell their stories, raise problems, track progress etc. The site also had a latest news section which kept the main site from appearing static. People are hungry for news but many do not or cannot just continually surf the net or will necessarily be able to pick out the important news items.
Thought needs to be given to the website content. A well designed site that is light on content won't retain vistors. Likewise, while its understandable to want to have something up and running there's nothing more offputting than sections waiting for content or links that don't link.
You IT buffs may know the tricks. I know that the frenchhealthisues site always appeared first in keyword searches.
Political pressure works. Many people wanted to write to their elected representative, the French government, the health ministry, the European Union etc but didn't know all the issues or how to write the letters (or even who to write to). The website held names and addresses of elected reps plus template letters for all purposes also translated into French where appropriate. Basically we made it as easy as possible for each individual to bombard the decision makers with personal correspondence.
Many governments make use of polls, petitions etc as part of their 'public outreach' - encourage everyone to use them.
Try to identify 'tame' politicians and cultivate them. Each individual should identify their public representative and contact them to provide their support
as all public reps should.
Finally, get friendly with the media. Public embarassment is the politocos no1enemy, particularly where they are vulnerable, and the media love public interest stories. I'm also sure science programmes such as the UK BBCs Horizon would love the XMRV story. So much going on - third? human exogenous retrovirus, cancer, ME/CFS, Gulf War Syndrome, public health risk, government cover ups etc?
Thats all I can think of off the top of my head. Apologies if its all obvious.
Mark