Phoenix Rising: Its Promise and Future

Posted by Cort Johnson

pr logo 1 wider risingME/CFS can be isolating but people with ME/CFS do not have to be isolated and Phoenix Rising is a big reason why. If John in Los Angeles wants to get the latest info on GcMAf; if Pat in Miami needs to get the latest research news, if Mary in the UK just wants to chat – they know where to go.

Every day about 300 users post several hundred posts to the Phoenix Rising Forum. With over 200,000 posts on any topic under the sun, the Phoenix Rising Forums covers ME/CFS. With new articles on research, treatment and advocacy published every week, Phoenix Rising is the place to go for accurate, objective information on our disorder.

“Cort is excellent at keeping up the news and simplifying complex concepts. I rely on him, and you should too! Phoenix Rising is a great source of reliable, up-to-date information. Help Cort continue this service by donating….

Dr. Charles Lapp of the Hunter Hopkins Center

Phoenix Rising Stands Out in a Tumultuous Year – 2011 was the most tumultuous year the ME/CFS community has experienced.  As a major news source for ME/CFS, Phoenix Rising was faced with difficult decisions when negative findings on XMRV started appearing.  Wary of a patient backlash, other organizations simply stopped delivering commentary altogether, but we gritted our teeth and reported as accurately and objectively as we could.

Leader1We took some hits for that, and lost some supporters, but we stayed true to our mission – to deliver, as best we can, accurate and objective information on all aspects of ME/CFS.  That’s why I started Phoenix Rising eight years ago and delivering that is Phoenix Rising’s bedrock commitment to you.

In that vein we brought the ME/CFS Community a slew of stories.  Here are just some of them.

  • Over the past two years PR has published over 50 articles and hundreds of pages of information on XMRV.
  • PR ‘broke’ the news on Rituximab with an interview with Dr. Mella in Dec of last year, and provided full coverage of the latest study.
  • PR produced the first ever lengthy interview with renowned clinician Dr. Peterson, and is featuring Corinne’s ongoing blogs of her experiences with him.
  • PR’s coverage of the International Consensus Criteria for ME featured an interview with co-creator Marg van de Sande and three articles on the history of Myalgic Encephalomyelitis.
  • PR’s three-paper series explored the Lights’ dynamic gene expression work and the possibility of nervous system herpes infection
  • PR provided full coverage of the State of the Knowledge Conference and is in the process of doing so for the IACFS/ME Ottawa conference.

We Could Use Your Help – Phoenix Rising is a small organization with a big footprint – look up any CFS topic and you’ll likely see an article, blog or forum thread from Phoenix Rising. We do all this with a small ‘staff’: one paid full time employee ($500/month) and a small group of patient volunteers.

In 2011 we brought the Forums, newsletter, blogs and information on PR  on a shoestring budget (@ $1200 a month) – less than what a full time minimum wage employee makes – but costs are rising. Our server costs alone have jumped 400% in the last year and a half, forcing us to divert precious funds from elsewhere to keep the Forums and websites running.

Investing in Phoenix Rising

“Phoenix Rising is an excellent source of up to date information on the latest research findings in CFS/ME.  Cort’s analyses put exciting advances in context as he explains the limits as well as the promise of new research.  I refer my patients to his site every day.   Please be generous in your support of this most valuable resource! “

Dr. Nancy Klimas

We would like to do more – much more – which is why we’re asking you to invest in the following projects.

An Effective Showcase For Phoenix Rising

Right now Phoenix Rising is information-rich but presentation-poor. PR is actually three websites, none of which work very well, making it difficult to access the hundreds of articles on CFS.  Integrating these websites into one central, easy to navigate website incorporating the latest web technology is a key goal for PR in the next year.

A Commitment to Make Your Life Easier

As important as accurate information is, PR is not content to remain just an information provider. We’re committed to assisting ME patients in the issues they face every day.  There’s a lot of problems out there. Few good doctors, few effective treatments, problems with disability, isolation, finances….. The good news, though, is that working together we can shed considerable light on some of the most problematic issues facing us – making all our lives easier.  Creating that community of people – that ‘village’  – is Phoenix Rising’s next task.

It Takes A Village – So Let’s Create One

Finding adequate treatments, finding good physicians, building local communities, using our skills and supporting each other in the marketplace…..Phoenix Rising proposes to build programs that will help address all of these issues.

Treatment Review Program

TreatmentChoiceThe Forums and the Phoenix Rising website have information on everything from Rituximab to antiretrovirals to GcMAF but while the information is there, it’s not presented in a format that gives quick answers. Phoenix Rising proposes to build a program that provides patients with information not only on what works and doesn’t but on what types of patients they work for.  Imagine clicking on GcMaf or valtrex or methylation therapy and getting a report not only on how well it works but what kinds of patients it works on.  Projected Cost – 7-10K

Physician Review program

PractitionersFinding a good physician can be a time-consuming, expensive and often fruitless  process.  Finding that diamond in the rough – the doctor that really listens and is ready to try new things – can make a big difference, as can staying away from that ogre who dismisses CFS like it was a sore throat. PR’s physician review program  –  the first specifically devoted to CFS and FM –  is nearing completion; what we need now is someone to pretty it up for the web.. ..Projected Design Cost – 1K

BridgingGroupsCommunity Rising – patients can ‘talk’ to each other virtually on the internet from anywhere on the globe, but what about those precious face to face meetings? What about those hundreds or thousands of fellow patients in your city that you don’t know?  The Community Rising program will assist you  in getting to know and interact meaningfully with your CFS neighbors.  Projected Cost – 1-2K

Community MarketPlace – Corinne sells wreaths…..Mariska produces art…..Will is a computer programmer…..All have ME/CFS…..all are strapped for funds because of reduced incomes or high medical costs – and all could be supported by other people with CFS.  The CFS Community Marketplace could easily be built – if we had a bit more help and money.

bigstock Teamwork 157328241Project Incubator – Sitting at home, out of work, your years of education and training slipping away?  You had pride in your work. You were good at what you did. You still have some energy and you still have those skills…. Phoenix Rising’s ‘project incubator’ program is designed to find a way for you to dust off those skills and put them to work – at your own pace. Projected Cost – 1K

Integrated Website – Projected Cost (with volunteers doing much of the work) – 3-5K.

Total Costs  – Somewhere, if we do it right, in the neighborhood of $20,000 – a drop in the bucket for many non-profits – but with Phoenix Rising’s commitment to lean, effective work – a big boost for the ME/CFS community.

My associations with Cort Johnson and Phoenix Rising have all been productive and positive.  I admire his straightforward but engaging journalistic reporting of complex situations regarding CFS issues.   I hope the CFS community will donate to Phoenix rising, and to all other worthy CFS non-profits.

Dr. Lucinda Bateman 

Please invest in Phoenix Rising’s commitment to rigorous reporting and innovative web solutions that better  the lives of people with ME/CFS.

You can invest in Phoenix Rising’s work in several ways

One Time Donation 

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Recurring Monthly Donations

(Click on the image and look on the left hand side of the page for Recurring Donation Options)

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Matching Corporate Donations

Many Corporations give matching donations to certified non-profits. A matching corporate donation was very helpful to us last year (and we know there are more out there ). Don’t know if your company provides this service? Just ask us! We’ll let you know.  (

Phoenix Rising is a certified 501 (3) c non-profit organization in the U.S. Your donations are deductible to the full extent of the law. 




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