Phoenix Rising: Worth as much as Vogue?

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by Sasha

Photo by Sirsnapsalot: best name on flickr

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.
• 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!

Support Phoenix Rising​

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Thanks Sasha. I think it's a really great reminder of all the stuff Phoenix Rising provides and you've done a good job of pointing out all the key stuff!

When I first found PR I knew nothing about ME/CFS and the articles in particular were really important aspects for me as I wanted to know what was going on in the ME/CFS world, and not have to wait for the NHS to catch up...
Subsequently, the forums became really important for me too and I do value them.

I think a lot of people dont realise all the hard work that goes on behind the scenes to keep things running and provide more good stuff for the readers, members etc.

 

I do like that there's nothing for sale on this website. I never want to see shaken water, miracle don't-call-it-medicine mixtures or even vitamins for sale here. While there are over the counter drugs we rely on and that produce results, I've found that if someone is advertising/pushing something it tends to be either worthless or harmful. While there is plenty of strange stuff discussed here I haven't (yet) seen it morph into a front for selling stuff. So, I'm hitting the Donate link.

Suggestion: Place and explain the Amazon link visually under the Donate button. Something like "do your usual Amazon shopping through this link and PR gets a few $". If one can help PR keep going while buying whatever I already needed at Amazon that is both painless and helpful. We could just put the Amazon/PR link on the browser's quick-bookmarks link and it needs no further, scarce brain cycles.

 

I do like that there's nothing for sale on this website. I never want to see shaken water, miracle don't-call-it-medicine mixtures or even vitamins for sale here. While there are over the counter drugs we rely on and that produce results, I've found that if someone is advertising/pushing something it tends to be either worthless or harmful. While there is plenty of strange stuff discussed here I haven't (yet) seen it morph into a front for selling stuff. So, I'm hitting the Donate link.

Suggestion: Place and explain the Amazon link visually under the Donate button. Something like "do your usual Amazon shopping through this link and PR gets a few $". If one can help PR keep going while buying whatever I already needed at Amazon that is both painless and helpful. We could just put the Amazon/PR link on the browser's quick-bookmarks link and it needs no further, scarce brain cycles.

Thank you very much, HowToEscape.

The board are all determined to avoid conflicts of interest and advertising of wares on PR; you've probably noticed we are very strict on that principle. Of course, that does mean we have to get money to run PR somewhere else. There are a couple of things on the table at the moment though, which it would be good to get members' views on (I expect we'll post a thread to ask members what they think before we do either of these).

Firstly, PR always used to carry a banner ad for ProHealth, with an affiliate link so we could get money on members' purchases from there. That would go on appropriate forum sections relating to vitamins etc, somewhere in the treatment forums I guess. ProHealth donates a great deal of money to ME/CFS research and ME/CFS non-profits, and it has a good and strong relationship with the ME/CFS community, as I understand it. So I see it as kind of a special case...but we're still weighing that up.

Secondly, we would like to introduce a separate Community Marketplace section, where anyone with products and services to sell can promote them, and members can discuss those products and services. We could implement that quite easily with the software we already have. This would be a completely separate section, which anyone wanting to avoid it could easily ignore; it could generate income to support the rest of PR's work; and it would help to draw a clear line between our strict advertising-free policy on the website and forums, and legitimate promotion of ME/CFS-related products and services which our members are interested in. It could actually help keep any kind of commercial interests off the main forums by giving an outlet where that's allowed. It could also be a place where members can buy and sell whatever they want, second hand. It sometimes seems a shame when there are commercial orgs, or just individuals selling useful books, who have something some of our members would be interested in, and they approach us and we have to turn them away. Any thoughts on these tentative ideas would be welcome...they are tentative and we're still thinking them through; no decisions have been made yet.

Your suggestion on updating the Donate link is very timely, thank you very much for that idea. I'm actually planning to update that advert starting from the very next article, so I will incorporate your excellent suggestion when I do that. Thanks!

 

Firstly, PR always used to carry a banner ad for ProHealth, with an affiliate link so we could get money on members' purchases from there. That would go on appropriate forum sections relating to vitamins etc, somewhere in the treatment forums I guess. ProHealth donates a great deal of money to ME/CFS research and ME/CFS non-profits, and it has a good and strong relationship with the ME/CFS community, as I understand it. So I see it as kind of a special case...but we're still weighing that up.

I don't see how this is any more a special case that your current arrangement with Amazon. It seems like a nobrainer to me.

I like the Community Market Place idea. Those who found it useful could use it; those who did not could avoid it.

 

"Firstly, PR always used to carry a banner ad for ProHealth, with an affiliate link so we could get money on members’ purchases from there. That would go on appropriate forum sections relating to vitamins etc, somewhere in the treatment forums I guess. ProHealth donates a great deal of money to ME/CFS research and ME/CFS non-profits, and it has a good and strong relationship with the ME/CFS community, as I understand it. So I see it as kind of a special case…but we’re still weighing that up."

I personally dont see why that would be an issue and do think that is a great idea.

The other idea thou .. Im not too sure about. Thou the advertising of selling of things would be in its own section.. that is likely to attract salespeople or those with commerical interests to the site as members and thou you are suggesting it will be in its own area, these types of people are always looking for opportunities to push their products and could end up with many sneaky forum posts doing it in less obvious ways. It could turn out to be a bad idea. You'll risk getting salespeople who were drawn here by the sales area posing as ME/CFS patients to put sneaky sales comments on other sections of the board (not necessarily using the same name as they use in a sales section). (then to top it off they often sign into sites with multiple names so they can then put good comments on the products they are selling)

I dont see an issue thou with a non commerical thing where those with ME/CFS can sell things they no longer want or need eg I have a bottle of such and such supplements for sale which I only took one and have a couple of other bottles never opened etc etc .. and with PR getting a percent of the sale.

One of the very good things about this site I like is one hardly ever gets approached by salespeople even in sneaky ways (sneaky salespeople do my head in as it can be hard to work out if someone is innocently telling you about a product which helped them or has ulterior motives), I really hate that, it puts me off of sites and its only ever happened to me twice here so far.. that's my main concern over your suggestion..

 

Thanks indeed to everyone who helps make it sucha great and useful forum
Re this statement-
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.

I was never aware of that , so how about for a start - a banner on the site to say that and a permalink on display that is easliy shared on fb and other media as most people will happily purchase that way .
Thanks again for all the great work and contributions

 

I forgot about that, I don't shop there often but just did the other day!

GG

PS I started making a monthly donation to this site again. Do it if you can!

PSS You can donate as little as 1 dollar, so if many people did this, it would add up to real money!

 

I forgot about that, I don't shop there often but just did the other day!

GG

PS I started making a monthly donation to this site again. Do it if you can!

PSS You can donate as little as 1 dollar, so if many people did this, it would add up to real money!

Thanks! Apart from Amazon, the things that Mark is talking about are possibilities for the future that might not come to pass and PR needs cashflow now.

We're so used to getting things for free on the internet that when a service doesn't demand a fee upfront, it can be hard to realise that it still costs money. I see a lot of high-quality blogs these days that state that if readers don't leave a tip in the jar on their way out, the blogger can't keep going and, of course, they can't - the money has to come from somewhere.

So, if you can afford it, please go to that Paypal button, think what you'd pay for a magazine that gave you everything that PR does, and support it!

 

Good article, Sasha, thanks. Helps to remind me of how much I value PR.

Apart from the fabulous blogs , I get most out of the forums, and a separate group hosted on PR. Mostly I'm aware of the other people posting who make these places so worthwile, and it's easy to forget that PR provides the infrastructure and maintenance/development to keep these things going for us, for free. And ad-free. (Thanks!)

As ggingues says, even a dollar a month will help and if every regular user of PR gave that, it would go a very long way.

I wouldn't mind the odd advert, particularly if they weren't all supplements/'treatments' for ME.

Shopping for PR
If the Amazon stuff helps, I think there should be a small click-to-shop graphic as a convenient reminder on every page, or at least on every forum home page.

The MEA association in the UK use Amazon plus a whole load of other sites too, via easyfundraisng, and have raised £2,500 so far, presumably with much less traffic than PR.

but maybe that's what Mark is thinking of already. I do all my shopping at Tesco so that would be a no-brainer for me.

 

Big thanks to everyone who's donated so far, and thanks for the ideas too.

I didn't know about easyfundraising, that will be a good one to add for PR. And Allyson's right, we do need to add those banner notices...there's a little bit of work to be done to get a sustainable system to manage a range of different notices on different pages, but that's already underway and should hopefully be up and running in the next week or two.

 

I'm a new member and this has drawn my attention to the Amazon source of funding. I shop with Amazon all the time, being bedfast, and loving their truly no-hassle return guarantees. I'm very appreciative of keeping the fundraising presence unobtrusive and think occasional reminders of things like the Amazon link would be an excellent idea and not detract from the lovely inflamed-brain-friendly low key aura of the website as it is.

 

Shopping for PR
If the Amazon stuff helps, I think there should be a small click-to-shop graphic as a convenient reminder on every page, or at least on every forum home page.

The MEA association in the UK use Amazon plus a whole load of other sites too, via easyfundraisng, and have raised £2,500 so far, presumably with much less traffic than PR.
View attachment 4645

but maybe that's what Mark is thinking of already. I do all my shopping at Tesco so that would be a no-brainer for me.

I don't go to the home pages very often, I get emails sen to me, and respond as I like. So something on threads headings/bottom would be more effective in my usage.

GG

 

I'm sure all this feedback about where we notice (or don't) PR's calls for donations is useful for the technical team. We're all so used to mentally filtering things out online! That's one reason I wanted to write an article - it had some chance of getting noticed!

Apparently we're already getting some donations in, in response to this article, which is good to know. PR really is easily worth as much to me as a TV listings magazine (or Vogue, not that I am that fashionable!) and I hope it is to you - please do donate something to keep it going if you can afford it.

 

...
The other idea thou .. Im not too sure about. Thou the advertising of selling of things would be in its own section.. that is likely to attract salespeople or those with commerical interests to the site as members and thou you are suggesting it will be in its own area, these types of people are always looking for opportunities to push their products and could end up with many sneaky forum posts doing it in less obvious ways. It could turn out to be a bad idea. You'll risk getting salespeople who were drawn here by the sales area posing as ME/CFS patients to put sneaky sales comments on other sections of the board (not necessarily using the same name as they use in a sales section). (then to top it off they often sign into sites with multiple names so they can then put good comments on the products they are selling)

I dont see an issue thou with a non commerical thing where those with ME/CFS can sell things they no longer want or need eg I have a bottle of such and such supplements for sale which I only took one and have a couple of other bottles never opened etc etc .. and with PR getting a percent of the sale.

One of the very good things about this site I like is one hardly ever gets approached by salespeople even in sneaky ways (sneaky salespeople do my head in as it can be hard to work out if someone is innocently telling you about a product which helped them or has ulterior motives), I really hate that, it puts me off of sites and its only ever happened to me twice here so far.. that's my main concern over your suggestion..

Sales people and spammers come here all the time. Most of them don't get past the approval process. We have a spam trap that automatically gets rid of hundreds of spammers and we don't even see them in the registration queue. Generally, every month we ban about 45 - 50 registrants as advertisers/spammers. Some come back and try again and they always get caught because our software catches duplicate/sock puppet accounts. This is why you don't see many sales people posting on the forum. It's exceedingly difficult to sign on with different user names and it's kind of obvious if a person is here to promote a product. We also have a user group that we place some new members in -- we suspect they are an advertiser but have very little proof. We see what they post via moderation. If they post links -- we ban them. We have caught a few with this method. We also have members who report links that appear in a new members first post and we investigate that immediately. I think with all the things we do, sock puppet sellers won't be an issue if we do have a Market Place.

 

Sales people and spammers come here all the time. Most of them don't get past the approval process. We have a spam trap that automatically gets rid of hundreds of spammers and we don't even see them in the registration queue. Generally, every month we ban about 45 - 50 registrants as advertisers/spammers.

I appreciate your (plural) diligence.

 

Big happenings at the tick conference
think the worm may have turned
spoke to most of the Lyme doctors
Government committee formed
will update when i can

 

Big happenings at the tick conference
think the worm may have turned
spoke to most of the Lyme doctors
Government committee formed
will update when i can

Hi GcMAF - did you mean to post this on another thread?