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Phoenix Rising Board Statement Re: Cort Johnson’s Announcement

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 30, 2012.

  1. Dainty

    Dainty Senior Member

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    Well aren't we a fine group of backseat drivers! :rofl:

    We all want to contibute our opinions, but don't want to contribute to the work. I know, most of us simply cannot.

    In the meantime, PR doesn't appear to have the people they need to get the most important projects finished within a reasonable timeframe, let alone consider implementing new ideas. I draw this conclusion from the fact that they're requesting volunteer assistance with accounting in order to provide transparency, and also that a Board member rather than a designated PR spokesperson is spending all day replying to these comments instead of directing that massive amount of time and energy towards attending to the actual organizational issues in question.

    I suggest PR consider hiring out the tasks they are unable to do rather than stretching themselves too thin or expecting new volunteers to appear and take up the slack. Regardless of feelings on the current issues, I think we can all agree that everyone wants everyone else to be as healthy as is possible. :)
     
    illsince1977, grosolo, justy and 2 others like this.
  2. Enid

    Enid Senior Member

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    Mark - there must be some way through this - Cort is PR - he has to eat - his comittment self evident - his capacity for analysing dare I say despite plodding science with inspirational thinking unique - there is no one else here on PR who dares to try. You have a rare bod with a special place and should treat accordingly.
     
  3. Dainty

    Dainty Senior Member

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    If Cort is PR then I don't know what the rest of us are doing here! o_O (No offense, Cort! ;) )

    I'm a little confused...you're saying $50 an article is not enough to obtain sufficient food?
     
  4. Enid

    Enid Senior Member

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    Well he started Dainty - don't know the finances except all pushed - over to the Board. What does it take for you to eat and run heating, living, lighting, food, internet connection, rates, rent etc. ?
     
    SOC likes this.
  5. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I imagine there are many patients in the same position of having to scrape by. I certainly am one of them. I am very skeptical of anyone trying to make a living of patients. I don't think it is right that someone, regardless of their contribution, should demand that patients reimburse them for their efforts. There are too many people in the industry who have set aside what is right to earn a living off patients. The business of earning off patients is not about doing what is best for patients. It introduces conflicts.

    Furthermore, it has always been accepted that articles contributed by commercial interests be headed up as "Advertorial". Cort's current arrangement means that his current and future blogs should labelled as such. The reasons for this should be obvious.

    The big question is how many of his blogs on this site should also be labelled "Advertorial".
     
  6. beaker

    beaker CFS/ME 1986

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    Heaps started a thread HERE about other organizations and the issue of me/cfs news summary came up.
    Reading this I was like ... hmmm I thought I posted here on this.... lol but it was elsewhere.
     
    AFCFS likes this.
  7. snowathlete

    snowathlete

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    Charities/not-for-profits, paying for content is normal people...has been for a long time. Of course such organisations also benefit from donated content, discounts and other good will from contributors and that is a good thing, but such organisations correctly act business like and make business decisions like Mark is describing. An online organization like PR thrives on content for the site. without it it doesnt grow and could even die. Paying for content that brings in a net profit is good. It's prudent because an Organization like this can grow and affect more change if they are more profitable. Failure to do stuff like this would be mismanagement.

    Regarding quality of content, not everyone can write well and a stand alone article and a forum post (even good ones) are different beasts and it takes skill, time, effort and a great deal more accuracy and experience to research and write good quality articles.

    I would challenge anyone who has reservations to try writing such a quality article that a group of peers would agree was worthy of the mentioned $50 fee. Chances are you'll feel like you earnt it by the end! And what it boils down to is such quality articles translate to profit for the Organization paying for them.

    Personally, I'm pleased if a charity I donate $50 to then invests that sensibly and quickly turns that into $70 with which they can achieve a greater end result.
     
  8. AFCFS

    AFCFS Senior Member

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    I see your point. I am thinking that maybe a way to dispel some of the concern would simply be to have the blogs/articles well cited. Most people exhibit a bias, even though they may not intend to. When we write about topics we tend to highlight some things and downplay others. It is quite impossible to include everything and sometimes even including representative contesting views is difficult. With works well cited (and with hyperlinks to sources), people could read what they want, take from it what they want, or research the subject as much as they want and then post replies. Overall, it would provide for a better informed writer and audience.

    Cort has been very forthcoming about his new endeavor:
    And that is fine. A commercial view is not always bad, especially if it is well cited; then it just lends a different perspective. And In general, I think all works should be read with a critical eye.

    I look at this in example: If I am searching for information on vitamins/supplements then I would like to find some factual/unbiased reviews. Many can be found on pubmed, but it can take a lot of reading. Many vitamin/supplement sellers will post favorable research reviews on their website to help sell the product. This can help me, as they have already done some of the legwork for me. That, I feel, is a good place to start. Then I also look for more detail, anything negative, or contraindicated, and it is nice to have some anecdotal response.

    One more example that can show how this works, is the recent Ampligen hearings. There was plenty of hoopla invested in the drug, but there was also many people pointing out Hemispherx’s bad science, and likely unethical practices. So, in that case, no amount of commercial endeavor could push through some glaring concerns. On the other hand, some may blame the bumbling bureaucracy of the FDA. There are many sides to the argument.

    I see the same type of citation/argument as a good platform for PR contributions. There is also a strong incentive behind that way of doing things. If part of the contributor requirement is to "defend" the contribution, then most people are going to make sure to cover their bases, by doing their research and being fair to many sides of contention. If not, they may find their ideas coming under fire and consuming more of their time than would have been spent by presenting a fair view in the first place.

    - just some thoughts
     
    MishMash likes this.
  9. Dainty

    Dainty Senior Member

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    Right, he started it - and then he gifted it to the common good. Turning an organization into a charity involves giving up your rights of ownership, which is a very generous act and I'm thankful Cort had the heart to go that route. Being the founder of a dynamic, effective nonprofit entitles a person to a great deal of respect, but it does not entitle them to a job. That right is laid aside during the incorporation process into a nonprofit. Cort didn't have to do this, indeed, if making a living off of PR was important to him it would have made more sense to keep it for profit. These were his decisions.

    What about the other volunteers working full time to keep PR up and not receiving a dime for it? Don't they have to eat, too? Why do you feel strongly about Cort getting paid more than $50 an article when others who sacrifice their daily lives for PR aren't receiving anything at all?
     
  10. MishMash

    MishMash *****

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    I tend to agree with you, AFCFS. Mainly because I use the internet nearly every day, and I know that all these "free tools" (gmail, yahoo, etc) are not really free at all. These companies are giving you free email, news, content, because they want to sell you stuff. They all have a profit motive. Yet in many cases, the news and analysis they provide is extremely intelligent and salient.

    When we see ads or content making unscientific or obviously unsupported claims, we just skip over the content. The market place weeds out weak or unsupported ideas. Or sites that overly crowd the reading field with junk ads tend to lose readers relatively quickly. ME/CFS readers tend to be quite well-informed and motivated. Web sites that insult the intelligence of these readers will quickly find themselves extinct. Credibility is slowly earned, but quickly lost.
     
    Wayne and AFCFS like this.
  11. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    The analogy which represents the sort of bias that I am referring to would be if Rupert Murdoch wrote a regular column in one of his newspapers. You just know, no matter how much sense, or how much truth there was in the article, the real issue is how much was left out and how much has been over-emphasized to support his political/business motivations.

    An article written on a commercial site like Yahoo, where the commercial aspects are readily identifiable, (eg, the article if helpful, and the commercial bits are separate - like ads) is very easy to interpret.

    The lines blur when the objectives of the author are integrated into the story. Ironically, the more skilled the author, the harder it is to make judgments. This skill adds value to the output of the author and may lead to commercial interests engaging this person to help put their point across, without the readership being aware.

    For example, Simmaron would not pay Cort out of the goodness of their heart. It would be a commercial decision. It may be as blunt as trying to boost funding for Simmaron, or more effusive as helping to create an environment where ultimately funding/patients are increased. But it is a business decision. And Cort has to earn his money.
     
  12. MishMash

    MishMash *****

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    The world of scientific research is nearly flat now. Anybody can google any claim or stated opinion within seconds. NIH made its entire database searchable on pubmed years ago. I appreciated Cort's stewardship of the PR website that's all. I never believed any of the claims about Ampligen or Montoya because I never saw any corroborating evidence. Neither subject ever passed my B.S. detector. You could say the same thing about 50% of scientific studies put forward initially as "true". But PR is just a market place of ideas. And ME/CFS consumers are extremely well informed and motivated. The site owner does not wield that much influence.
     
  13. RestingInHim

    RestingInHim Realist

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    I haven't followed this situation...this is the first I've read about it. But I, for one, am glad to know you have been compensated for all the invaluable work you have done here, Cort! I have no idea, nor do i need to know, when and how much compensation you've received, but i imagine when you began this website...which i discovered in it's early days, you received no compensation. In fact, i seem to remember you were without a place to live at some point.

    I will ever be grateful to you for PR. i could never have found, much less digested, all the information you have boiled down into laymen's terms and bite-sized pieces! I cannot thank you enough!

    I wish you the best in your new venture and hope, for my sake, I can find you there!
    Resting...ever so much better, thanks to you!
     
    taniaaust1, Dolphin and MishMash like this.
  14. Cort

    Cort Phoenix Rising Founder

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    Thanks again..

    For my two cents I see paid blogging as a way to enhance Phoenix Rising and to support the community..I think it's great that community members, most of whom are not working, have an opportunity to enhance their finances using skills that may be languishing otherwise.. I wish there were more opportunities like this..

    However it comes about, whether its paid or donated,I think getting more good content out to the community is empowering for the community. That's one reason why, in retrospect, 'we' should have done this earlier. Its one way this change has created opportunities.
     
    SickOfSickness and Valentijn like this.
  15. beaverfury

    beaverfury beaverfury

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    Second that. Thanks so much, Cort.

    I really gained from your articles and looked forward to them. You clarified and simplified matters for me.
    It felt like you were bringing the latest news hot off the press.

    You bridged the gap between researchers and patients and gave us much needed hope that the ME/CFS agenda was high in the mind of some very capable practitioners and scientists.

    You have given cohesion and forward looking impetus to a group that badly needs and deserves it.

    May your health return and you be blessed with a thousand virgins.. Give or take a few.
     
    Dolphin, MishMash and Sing like this.
  16. Sing

    Sing Senior Member

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    Phoenix Rising and your work, Cort, has given me a knowledge of our common experiences, social communication around it, up-do-date awareness of the thinking and current involvements of our best researchers. It has made a critical difference in my life. To have such a disabling illness without reoogntion or help has been like falling through space, scattered in groundless hypotheses, useless or harmful treatments, and an unconfirmed reality--not unlike the physical experience of OI and dysautonomia itself. Your work here has helped to provide a hugely needed traction and orientation, with which I have been much better able to communicate to the others in my life who know so little which is correct but who nevertheless hang onto their misunderstanding as if it were necessary to survival. Such misunderstanding is, however, only necessary for maintaining a comfortable ignorance, a justification of old views. Reinforcing a certain view of reality is what we are used for, however distorted interpretations and treatments of us may be. Throwing this off and reaching for science and reality in every area of our experience has been the effort here--yours and ours--and it has succeeded.

    We here at Phoenix Rising have a responsibility to keep our site on high ground, together and focussed, so that this forum can continue to serve us in the years of work ahead. We are not through, but when our illness is finally understood, and ways of treatment discerned, I expect that medical knowledge will be greatly advanced for other areas too and other types of illnesses. But best of all, we will finally get help!
     
    ahimsa, Dolphin, MishMash and 3 others like this.
  17. K2 for Hope

    K2 for Hope ALways Hoping

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    Oh, Sing:

    Imagine the day when Phoenix Rising is only used as a social outlet! What a beautiful dream! :angel:
     
    SickOfSickness and beaker like this.
  18. Dainty

    Dainty Senior Member

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    Reading this discussion yesterday, when the matter of financial transparency was raised I recalled a past PR article where some financial information was previously disclosed regarding PR. Thinking it might be helpful to clear the air, I went out in search of it...

    ...and discovered it is no longer there.

    The article was called Phoenix Rising in 2012: Its Promise and Future. Now, when I go to the December 2011 archives, I get in its place a short blurb called Phoenix Rising: Its Promise and a Link That Works :) which was written on December 14, 2011. Though all substantial information was edited out, the articles thread was apparently forgotten. At the time of writing this, clicking the link in the provided thread takes you to the original article, as does this direct link here: http://phoenixrising.me/archives/6472

    You'll notice it also bears the date of December 14, 2011.

    You can also still find a version of the article in Cort's blog, though dated December 20th.

    I thought long and hard about whether or not to reveal this information. I slept on it. I want to support everyone on the PR team and Cort as people, and I'm grateful for all the work they do. I'm not actually seeking to make their jobs harder, and I could easily have informed them privately that they had missed these things.

    I didn't, because my conscience wouldn't let me. I feel that statements have been made by Mark that are intentionally misleading, and as much as I respect PR my loyalties are first to the people with ME/CFS as a whole before any specific organization. As a patient, and as a regular member (I have not been a volunteer here in quite some time, now) I felt like it was an insult to our intelligence, which is doubly despicable when it's pulled on people struggling with a neurological disability.

    Bolding is mine.

    "Accurate information" already exists, which PR has attempted to hide. I do not understand why already published financial information is being concealed when the goal is, and I quote, "full transparency". The statement that none of the current board members or volunteers have received any payment may well be accurate, but it delibrately conceals the fact that PR did have a regularly paid employee at one time. Please don't pretend that has no relevancy to the questions asked about pay for board members or other volunteers. It's deceptive and it insults our intelligence, banking on the notion that we're all too brainfogged to remember. This is not "full transparency", it is hiding facts - facts that were published for the entire world to see barely over 12 months ago.

    Lest anyone think I'm bashing PR, let me make myself clear: I have every confidence that PR will, eventually, achieve financial transparency and that any questions of integrity regarding the use of funds will be fully settled in the public eye. In my volunteering days I came to know many of them personally and I have not the slightest doubt that is where their hearts are at. I've seen how they work and I personally would trust them to handle any and all funds in a responsible manner for the good of this community and not for their own gain.

    I expect this post to be removed, and I would understand that - but while I will respect any moderator decision or instructions on this forum, your reach does not stretch beyond it and I feel it's important for people to know these matters. I believe it's essential to PR's integrity that you remain sincere throughout this process. If you can't reveal something to us, then say that. But please don't pretend you're revealing everything about a certain aspect when you're not - that's just flat out disingenuous. :(
     
  19. wdb

    wdb Admin

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  20. Mark

    Mark Acting CEO

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    I don't see any reason to remove your post Dainty, I'm all in favour of having a conversation about these matters that is as open as I can be.

    I can assure you there was no intention whatsoever on my part to be disingenuous or misleading, but I do have to be very careful about what I say at this stage for a variety of reasons. I certainly don't want to say anything that is not true or that is not accurate lest that cause confusion later. I'm afraid I don't recall the article(s) you've referred to (I will look into that) - I don't know why any information was moved or removed (if it was) but I am confident there was no intention to hide any such information.

    My comment above stated that none of the current board or volunteers have received any such payments and have worked purely as volunteers. That is true to the best of my knowledge. Of course you are correct that Cort was paid, and that question has been answered publicly by Cort in the past. The information pages you're referring to presumably mention some details of financial payments, but I can't vouch for the accuracy of that information and clearly it won't be anything like up to date. It's true that there is financial data which we could disclose, but in my assessment the information that we do have is not ready for publication: it is not up to date and it needs to be collated, verified, and reviewed so that the information we present is complete, accurate, and gives a realistic and understandable picture of the finances.

    I'm glad that you've stated your trust in us publicly. I can assure you that there was no intention in my statement to mislead anyone by not mentioning above that Cort was paid. As I'm sure you can appreciate, there are delicate issues at a time like this and I did not want to make any comment at this time regarding the details of Cort's pay. I don't want to do so until we can give full and accurate information about that, and I hope you will all bear with us until we are able to do so.
     
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