by Sasha
The internet! Full of lovely free stuff. Until recently, we expected to get our news, expert advice, gossip – pretty much everything on the web – without paying.
Some content providers write for fun and don’t seek payment, but others need an income from their work. They get that via click-through advertising or because their content is advertising their goods and services. Some providers, notably newspapers, thought they could rely on advertising to pay for their free content but it didn’t work, and they have now set up paywalls. In other words, what looks free actually has to be paid for somehow or it will fold.
Phoenix Rising is free but it carries no adverts and doesn’t sell anything, so it has none of the usual commercial sources of income. But it costs money to run, even with people giving enormous amounts of time for free behind the scenes. Apart from an occasional windfall in an online voting contest, Phoenix Rising relies on donations. Ours!
I love it that if you’re not just sick but broke, you can benefit from Phoenix Rising for free. But if you’re not broke, I think it’s worth weighing up what’s on offer and what it’s worth to you, and making a donation to keep it going.
What’s on offer?
So, what do we get?
- The website/blog: We get regular articles, from a range of writers nearly all of whom have ME/CFS themselves, featuring the latest on treatments, pathogen research, fundraising and advocacy campaigns, new research organisations and initiatives, controversies, conference summaries, researcher interviews and profiles, what the FDA and NIH are doing, coverage and analysis of important meetings. It’s all in there. The website is visited by a staggering 180,000 unique visitors every month, and the site is probably the internet’s largest archive of articles on ME/CFS.
- The forums: The largest and most widely respected ME/CFS forums in the world, with over 300,000 posts, over 20,000 discussions, and over 6,500 members. Every day, more than 250 members log in to the forums, and 4 times as many visit every day. This is often where I’ve heard about interesting new treatments, new research, new opportunities to fundraise, new advocacy campaigns, you name it. It’s a highly effective network for joining together in email campaigns, online voting competitions for fundraising and so on. My health has improved because of this forum: maybe yours has too. And the team of moderators keep it a civil, safe and friendly place to be.
- The newsletter: A free monthly newsletter featuring selected articles from the website, with over 3,000 subscribers. It does cost money to send out a newsletter to a mailing list as large as this. [EDIT 2021: the Phoenix Rising newsletter is discontinued].
- The blogs: More than 200 hosted blogs, providing ME/CFS patients with their own space to unlock their creativity and writing skills by blogging about diverse topics such as their analysis of the latest research, their treatment progress, and their daily experiences of living with ME/CFS.
- The chat rooms: Integrated into the forums and available free to all members, helping to tackle the social isolation that affects so many patients.
- Social Networking sites: Phoenix Rising has sites on Facebook, Twitter, LinkedIn, YouTube and Google+, all due for further development later this year.
- Communications Technology: A range of communications solutions provided by Phoenix Rising are used behind the scenes by a variety of private groups working together on ME/CFS issues, including video meeting software, instant messaging, private forums, and wiki software.
- Advocacy: Phoenix Rising has represented us at the FDA’s ME/CFS ‘Working Together for Change’ webinar, as a signatory to the call for a strategy meeting with the US Director of Health, and, more recently, at the CFSAC.
What’s it worth?
So a lot there: Health advice, information about what’s going on, a chance to join in and help, a community. All the big news: XMRV, Lipkin, Ampligen. How much should you donate to keep it going?
Well, Phoenix Rising is basically a magazine with knobs on. A posh monthly magazine such as Vogue or GQ costs about $4/£4 (disproportionately expensive in the UK, great). I pay £6 a month for my weekly TV guide. Maybe that should be the minimum we think about giving (remember the knobs on), although if you’re hard up, clearly you should only give what you can afford.
And whether you can afford to donate or not, if you shop on Amazon you can donate big money at no cost to yourself, by shopping through Phoenix Rising’s Amazon store. Phoenix Rising gets 4%-8% of the cost of your purchases, and the Amazon store is now a significant proportion of Phoenix Rising’s income. Visit the donate page and bookmark the relevant link for your country, then just use that link for your Amazon shopping in future.
So, Phoenix Rising: give it a present. Its gain is your gain. The ‘donate’ button is just below!