Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Phoenix Rising 2013 Annual Report

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 5, 2014.

  1. Phoenix Rising Team

    Phoenix Rising Team

    View the Post on the Blog

    Mark Berry, Acting CEO of Phoenix Rising, presents our Annual Report for 2013


    Phoenix Rising's board of directors and volunteers were faced with a daunting set of challenges at the start of 2013, following the departure of our founder Cort Johnson. With only a skeleton staff of volunteers, the tasks that lay ahead of us were to stabilize the organization's finances and administration; to recruit a new team of writers, editors and publishers to provide content for the website; to continue running the world's largest ME/CFS forums; and to preserve Phoenix Rising's reputation as a reliable source of information and a well-moderated meeting point for the worldwide ME/CFS community.

    2013 has therefore been a year of transition and re-structuring for Phoenix Rising, but I am delighted to be able to report that we have not merely succeeded in "keeping the lights on" throughout the year. We have certainly done so, and that has been no mean feat. It has required a huge effort from some extremely dedicated and hard-working volunteers to keep Phoenix Rising running, and if this were all that we achieved in 2013, we could rightly feel proud of that achievement. But we've done a lot more than that...

    Major Achievements in 2013

    In the last 12 months Phoenix Rising has developed and matured significantly as an organization. In 2013 we have:
    • extended the scope and improved the quality of our articles, enhancing our reputation as a provider of high quality content;
    • continued to improve the technology and the moderation of our forums - forum activity has grown by about 20% during the course of the year;
    • promoted numerous online fundraising contests, helping to secure tens or even hundreds of thousands of dollars of ME/CFS funding for ME/CFS organizations;
    • established an excellent team of new volunteers to help run our day-to-day operations on the forum and website;
    • created the Phoenix Rising Store, adding several new big-name online retailers, which we hope will increase our income from affiliate schemes (currently our largest source of income);
    • arranged for academic research to be conducted into the use of our forums and the benefits that the forums bring to our members, which should enable us to build on our strengths, address any weaknesses in our services, and demonstrate to potential funders the value of the services we provide.
    • clarified the roles of board members and senior officers: Karen Luoto (President), Adin Burroughs (Vice President), Mark Berry (Acting CEO), Kina (Moderation Team Lead), Russell (Firestormm) (Content Team Lead)
    • adopted new, simplified bylaws and board meeting protocols, allowing us to operate more efficiently;
    • appointed new book-keepers and laid down new financial procedures, giving us a much better understanding of our finances;

    In short, in 2013 we have grown in size, we have improved the quality of our services, and we have laid firm foundations that will help us to continue to provide our existing services - and to develop new projects - in the years ahead.

    Server Statistics


    Server statistics reveal steady growth in traffic during the course of the year. Our servers are now serving an average of about 20,000 page views every day, and we served a total of about 3 terabytes of data during 2013. The statistics also show that we were visited by over 2 million unique visitors in the year, with almost 3.5 million visits. Despite this extraordinary level of traffic, the site experienced almost no downtime during the year and continued to respond quickly even during periods of software upgrades - an outstanding tribute to the exceptional work of Adin and Will (wdb) over the last few years in administering the Phoenix Rising servers and software. In the next year we plan to further enhance our reporting and monitoring mechanisms, giving us greater insight into the sources of our traffic, the relative popularity of articles and website pages, and site uptime statistics.

    Community Content Project

    The new Community Content Project has probably been the biggest success story of the year for Phoenix Rising. Over the course of the last year we have established a new team of writers, proof-readers, editors and publishers - nearly all of whom are ME/CFS patients and members of the Phoenix Rising forums. Some 21 different writers provided 112 Phoenix Rising articles in 2013, supported by a team of 5 proof-readers, editors and publishers. We have also adapted existing systems and processes to help the team to manage the publication process.

    Several of our articles have provided interviews and features involving other ME/CFS non-profit organizations in the US and UK, helping us to forge new relationships with those organizations. Other articles have promoted online fundraising contests and international funding appeals, and we have played a key role in helping to secure more funding for the wider ME/CFS community. We've covered major ME/CFS conferences and events like CFSAC meetings, the FDA's Drug Development Workshop and the Invest in ME conference in London; we've interviewed researchers and clinicians like Professor Jonathan Edwards, Dr Julia Newton and Dr Derek Enlander; we've reported on major research news like the Rituximab trials , Dr Lipkin's hunt for pathogens, and Dr Snell's CPET testing; we've published some oustanding science articles reviewing key topics in ME/CFS research; and we've helped to promote exciting new initiatives like the Dr Maria Gjerpe's MEandYou campaign to raise funds for Rituximab research, Ryan Prior's documentary film The Blue Ribbon, and Jen Brea's documentary Canary in a Coalmine.

    The Community Content Project has encouraged and developed the writing skills and confidence of many writers, enabling some to obtain paid work for their writing elsewhere, and giving a platform for housebound or bedbound patients to express themselves. We fully expect this project to go from strength to strength in the coming year, as more writers continue to join the team.

    Community Forums

    The biggest and best ME/CFS forums on the internet went from strength to strength in 2013, with an upgrade of the forum software, the addition of 18 new forums, a major re-organization of the forum structure to give a cleaner and more streamlined look, and a significant drop in the number of problem posts reported for moderation. All this hard work was rewarded with steady growth in forum usage of around 15-20% over the course of the year. As the graph illustrates, over the last 6 months of the year the typical number of members active on the forums per day rose to be consistently over 300, compared with 250 per day during the same period last year.


    New forums were added for Upcoming ME/CFS Events, the Institute of Medicine (IOM) Government Contract, General ME/CFS Discussion, and Feedback and Suggestions, as well as 13 new forums under the new Symptoms section. The re-structuring of forum sections organized the forums into categories and sub-categories, making navigation much easier. The upgrade of the forum software to version 1.2 brought several enhancements, including a new editor with an auto-save feature, a responsive design, and numerous improvements to administration functions. Kina produced two new accessibility themes for the forum - light and dark - for those with low vision or vision problems, but these themes had to be retired when the new responsive design was introduced. Two new accessibility themes are currently under development and will be added in 2014.

    An expanded team of Forum Support Assistants and Chat Moderators helped to ease the burden on the moderation team by keeping a watchful eye on events in the chat rooms, keeping the forums tidy by handling requests to edit thread titles or move threads, and accepting new members and blocking spammers. In 2013, the team manually accepted 3,183 new members, and identified and banned 466 spammers. As a result of this excellent work by the team, only 23 spammers made it onto the forums and posted, and these were nearly always caught and banned within an hour of their attempts.

    Thanks to this support from the team, the moderators were able to focus more of their time on responding promptly to reported posts, and together with a continuation of the new forum moderation policies and procedures introduced in 2012 this resulted in a dramatic improvement in the environment on the forums. During the last 4 months of 2012, a total of 256 posts were reported for moderation; in the 12 months of 2013, just 369 posts were reported. More than half of all reported posts are related to housekeeping issues, rather than issues related to potential rule breaches by members. Only 4 members were banned during 2013. Continued improvements to the efficiency of our forum administration and moderation procedures enable a small but dedicated team to focus on the often difficult task of resolving disputes between members and handling grievances with fairness, respect and sensitivity, which improves the environment on the forums to the benefit of all our members.

    Financial Summary

    Thanks to the hard work of the board in establishing new accounting procedures, I am delighted to be able to present a summary of the income and expenditure for Phoenix Rising in 2013. This summary statement has been compiled by myself, and it has not been audited, but to the best of my knowledge it is an accurate depiction of the organization's income and expenditure from January 1st to December 31st 2013. Official financial summaries will be prepared by our book-keepers early in 2014 and we will publish those financial summaries on our website when they are available.

    This unofficial financial summary shows a healthy surplus of income over expenditure of almost $3,000 for the year, thanks to a significant increase in the income from our Amazon Store, which we have promoted several times in the last year. This has now grown to be our largest source of income, and we have therefore created the Phoenix Rising Store, adding more online retailers, in the hope of building on this success.



    1. Bookkeeping costs include costs related to the appointment of new book-keepers, the establishment of new financial systems, and retrospective accounting of the finances for 2012. It is expected that bookkeeping costs will be lower in 2014.
    2. Payroll expenses relate to remaining IRS costs due to salary paid in 2012. There is currently nobody on the Phoenix Rising payroll and all staff are volunteers.
    3. The origin of the 'bank originated credit' entry of $414 has not yet been determined.

    Looking Ahead: Suggested Goals for 2014

    Our focus in the last year has been on taking the necessary steps to ensure the long-term stability and sustainability of Phoenix Rising as a professional and well-administered non-profit organization, and I am very happy to say that we are well on the way to achieving that goal. There is still more to be done, and we will continue to work hard on structural issues and on the continuous improvement of our existing services in 2014, but I believe we are now at the stage where we can begin to think about the next steps forward for Phoenix Rising.

    Our current services - our website and articles from the Community Content Project, our chat rooms and our forums - are well-respected world-leading resources for the international ME/CFS community, and the continued progress we have made with these services should be a great source of pride for everyone involved with Phoenix Rising. But the needs of the millions of ME/CFS patients worldwide are very great indeed, as is our imagination, our creativity, and our hunger for change - while the provision of services and the funding for ME/CFS research remain at disgracefully low levels. There is so much more to be done, and so much more that we want to do here at Phoenix Rising.

    Over the years, many projects have been proposed (and some have been attempted) by our members. A treatment review database, a physician review database, a 'community rising' global resource map, an ME wiki, a fundraising portal, a community alerts mailing list, the provision of suicide counseling services ...the list goes on and on. All of these projects remain as long-term aspirations for Phoenix Rising, and much good work has been done to lay the foundations for those projects, but they have been on hold for a long time because we have lacked the volunteer resources we need in order to maintain our existing services. We would all love to get to work on those projects as soon as we possibly can, and I believe we are now in a much stronger position to be able to start thinking about extending our services.

    Over the course of the next few months, I will be conducting a consultation exercise with our members and supporters through a series of articles on the Phoenix Rising website. The aim will be for us all to discuss together what the priorities for Phoenix Rising should be, in the next year and beyond, and also to recruit the team of volunteers that will be necessary if we are to develop and maintain further projects beyond those that we currently provide. Our priorities will ultimately be determined by the board in consultation with our volunteers and members, but I would like to begin the discussion by outlining the agenda for 2014 as I see it:

    • Expand our Board of Directors - in particular, we have a vacancy for a Treasurer
    • Improve organizational transparency and encourage more community engagement
    • Continue to recruit volunteers and writers and extend the scope of the coverage provided by the Content Team
    • Recruit more volunteers for the Forum Moderation Team
    • Extend our coverage of ME/CFS events and conferences
    • Improve our use of social networking (Facebook, Twitter, etc)
    • Review, update and re-structure the content on our website, much of which is now out of date
    • Create an Advocacy Team and consult members in order to determine an Advocacy Strategy
    • Consult with members in order to determine priorities for our future development projects

    The above goals represent my own vision for what I want Phoenix Rising to achieve in 2014, but I look forward to hearing from our volunteers and members what they would like us to focus on next.

    A Big Thank You to all our Volunteers

    At present, Phoenix Rising is entirely staffed and run by ME/CFS patients who volunteer their time in order to build and maintain our services to the community. At some point in the future, we may perhaps be in a position to apply for grant funding and employ paid staff, but for the foreseeable future our ability to achieve the above goals, and our ability to deliver further projects, will be dependent on the continued support of our generous donors, our army of online shoppers, and perhaps most crucially, the recruitment of more volunteers to work together with what is already a well-organized and successful team. If we can add as many members to the team in 2014 as we did in 2013, together we will be able to achieve great things.

    Everything we have achieved in the past year is entirely due to the dedication, professionalism and sheer hard work of our volunteers, all of whom donate their time despite the challenges they face as a result of their long-term illness. So I would like to end my report by thanking those volunteers from the bottom of my heart. It remains an absolute pleasure to work with such a committed group of remarkable individuals, and you can all be very, very proud of everything you have enabled Phoenix Rising to achieve. Your work - like so much of the best work - often goes unseen and unsung, but you all keep Phoenix Rising ticking over, and moving forward, and I believe that we are continuing to build something very special together.

    I'm delighted to say that there are now too many volunteers - writers, proof-readers, editors, moderators, forum support assistants, chat moderators, system administrators, advisors - who have contributed in the last year for me to be able to list you all here without the risk of leaving somebody out, but I would like to give a special mention to three people who I think have done more than anyone else to enable our success in 2013: Will, Russ, and Kina.

    Will (wdb) has continued to do a superb job administering the servers, upgrading systems, developing software enhancements, responding to technical support queries, and more. When technology works well and systems run smoothly, it can go almost unnoticed, but that requires a lot of hard work and forensic attention to detail - without Will, I am sure we would all notice the technology much more often! Russ (Firestormm) has recently joined the team as Content Team Lead, taking responsibility for a major job despite significant health challenges. It's a tribute to him that he has settled in so quickly and easily and done such a thorough and professional job that the transition has appeared seamless; his commitment to Phoenix Rising is exemplary. Last, but by no means least, Kina has continued to moderate the forums with extraordinary dedication, fairness, patience and grace, as well as completing numerous other tasks such as theme development, forum re-organization, and a variety of administration and communication tasks. Forum moderators are extraordinary people with an extraordinary range of skills and remarkable levels of commitment and patience, and none of them more so than Kina - we are very lucky indeed to have her on board. As such, I'm delighted to announce the appointment of Kina as Moderation Team Lead, which is merely a formal recognition of the role that she has occupied for the last year.

    We have so much more work to do, so many challenges ahead of us, such great needs amongst the community that we serve, that sometimes it can all seem quite daunting. At the same time, there is such spirit, talent and compassion within our community, such a dogged determination to make the best of things and to keep on trying to find ways to make all our lives better, such selflessness and optimism in the face of adversity, that this community is truly a source of great inspiration to me. I am confident that we will continue to work together in 2014 and beyond, and together this virtual community of ours will continue to achieve great things that make a real difference in the lives of the millions of long-suffering and neglected ME/CFS patients all over the world.

    Phoenix Rising is a registered 501 (c)(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

    There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

    And don't forget: you can always support our efforts at no cost to yourself as you shop online through the Phoenix Rising Store! To find out about more ways you can support Phoenix Rising, please visit our Donate page by clicking the button below.


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    Last edited by a moderator: Jan 5, 2014
    aimossy, WillowJ, ahimsa and 9 others like this.
  2. Andrew

    Andrew Senior Member

    Los Angeles, USA
    Thanks for all your hard work. This forum is like a light shining in the darkness. You are on my list of places to which I make yearly donations.
    taniaaust1, MeSci, rosie26 and 5 others like this.
  3. Mark

    Mark Former CEO

    Sofa, UK
    Aw, thanks Andrew. :)
  4. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA

    I'd also like to thank all the staff for the volunteer efforts.
  5. Tom Kindlon

    Tom Kindlon Senior Member

    Thanks to all the volunteers for their time, energy and commitment.

    Note, if anyone is interested, one can donate here: (or here
  6. Mark

    Mark Former CEO

    Sofa, UK
    Thanks Roy, thanks Tom. I can't overstate how grateful I am to everyone who's helped out - it's a real team effort. And thanks for the plug for donations; we do need to keep the money coming in if we're going to keep it all going and move on to working on those other projects I mentioned.
    taniaaust1, Valentijn and Tom Kindlon like this.
  7. rosie26

    rosie26 Senior Member

    Appreciate you all. Thank you to all you wonderful volunteers.
    Last edited: Jan 12, 2014
  8. Simon


    Monmouth, UK
    Good article, Mark and thanks to you and the board for ensuring a strong PR. And to all those volunteers, not to mention the whole community who, after all, make the forums worth visiting.

    Special thanks to @wdb for the latest software update which means the forum editor now works on a tablet (and smart phones, I think) - I gather around a quarter of all visitors use mobile devices to access the forum so this is a very big help.
  9. wdb

    wdb Senior Member

    It's actually a bit higher, around one third of page views and nearly one half of all visits are now from a mobile device.
    Valentijn, Mark, alex3619 and 3 others like this.
  10. voner

    voner Senior Member

    When I look at evaluating a nonprofit organization, I look for transparency in their communication. This is a pretty transparent report, and my compliments to all who did all this work. I especially enjoyed the explanatory articles on the blog. Thank you.
    rosie26, WillowJ, taniaaust1 and 4 others like this.
  11. Bob


    England (south coast)
    Thanks for taking the time and effort to report all of this, Mark. It's very interesting. And it's nice to be kept up to date.
  12. Mark

    Mark Former CEO

    Sofa, UK
    Thanks very much voner. I agree that transparency is very important, and the board do want to be as transparent as we possibly can be.

    There's probably a lot more work still to be done on this actually. One thing that I've learned in the last year is that transparency can be really hard work; it doesn't just happen by default, and it takes time and sometimes also money to achieve it. Financial information, for example, needs to be collated and summarised in a format that's meaningful to the audience, and there are often qualifying details which need to be explained or people will misunderstand the data. There can also be confidentiality concerns and legal concerns about what you can and can't release publicly, and not all information is appropriate for release - for example, it wouldn't be a good idea to release personal details of staff and volunteers without their permission, or passwords, or information that could assist hackers...etc, etc...

    So presenting a realistic picture of the situation doesn't just happen without work, but it's very important and we're committed to continuing to be as transparent as we can. I expect to be doing a lot more work on this in the coming year.

    I'm glad you appreciated our efforts on this. :)
    Sushi and Valentijn like this.
  13. Mark

    Mark Former CEO

    Sofa, UK
    You're welcome Bob.

    I tried to present as much information as I could that I thought would be of interest to people...but if anybody has any questions about it all, or anything they'd like to know (or discuss) which wasn't included, this would be a good place to raise those questions...I'm quite happy to answer them as best I can. I was expecting a bit of a grilling about it all actually, and I don't mind if people have some sharp questions to ask...
    Valentijn and Bob like this.
  14. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    :D I thought that was an excellent report Mark, Im quite impressed with it. Thanks for sharing it with everyone. I think this transparently could only help you to get more donations towards the site.

    I'd like to thank all the volunteers esp Kina and sorry forgot your name.. the one who keeps this site up and running. you do an excellent job and of cause you Mark for all your work here.

    All of the above sounds like a great plan.

    I have my hand up (looking for a hands up smiley but we dont have one) of wanting to be on the Advocacy team as I 'd get quite involved with that. Id be even prepared of taking more of a lead role with organising that. Lots of people are sure how great ideas (I know Ive got quite a few).

    Anyway, I think this site in many ways has come a long way. As you pointed out it is far more peaceful then it once was (the disharmony was something about this site which used to bother me). I find it amazing that during a year there was only 4 members who needed to be banned.

    I'd rate the site a 8/10. The only thing I'd like changed to how it is now, is that I'd like to see more medical minded articles eg written by medical minded members, doctor interviews or researcher interviews. (I guess those are not the easiest things to have done or get set up!!). If the number of those could be doubled, I'd give the site a 10/10.

  15. Kina


    Sofa, UK
    There is something missing from this article. Mark forgot to give himself some kudos but I can see why. Mark has dedicated hours and hours to Phoenix Rising despite being ill himself and having other obligations. Without Mark, I doubt many of the things accomplished last year would have been accomplished.

    Mark wrote the following words to describe the volunteers at Phoenix Rising, I have changed them slightly to apply them to him too:

    So from this volunteer, Thank You @Mark for doing all that you do for Phoenix Rising. It does not go unnoticed. :)
    Mark, rosie26, wdb and 2 others like this.
  16. Bob


    England (south coast)
    I enjoy the forum now more than I've ever enjoyed it. I really appreciate the attitude of the team who run Phoenix Rising. The quality of the team, and the sensitive moderating makes the forum a constant joy to use.

    The moderation seems especially fair, sensitive and efficient and this is probably the most essential part of any forum experience. It makes all the difference. Good moderation makes forums fair to all users and creates a safe and pleasant atmosphere where all users (esp the less vocal users) feel safe. I think this has been achieved beyond expectations and I'm very grateful for it.

    I visit the forum most days, and I always look forward to it, and I always enjoy it. I'm constantly aware that this is due to the hard work of all the team, as I've seen you all work so hard to develop and transform the forum over the years. I'm always grateful for it and often think that it would be very sad if the current excellent quality of the forum were ever to change.

    So a massive thank you to you all for such a great forum.
    Last edited: Jan 13, 2014
    Mark, rosie26 and Valentijn like this.
  17. WillowJ

    WillowJ คภภเє ɠรค๓թєl

    WA, USA
    well done! thanks to everyone :)
    Mark and rosie26 like this.
  18. adin

    adin Administrator

    My own personal thanks to Mark, Will, Kina and all the rest of the volunteers. 2013 started out kind of scary and ended on a great note.

    Here's to a great 2014!
    Mark, Sushi, Firestormm and 1 other person like this.

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