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Time Change Equals Jet Lag, ME/CFS Style
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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. Mark

    Mark Acting CEO

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    Thanks for those thoughts Tania, it's very helpful to get members' views on these questions.

    I can assure that we're determined to maintain the quality of the articles, and we certainly won't be posting articles just for the sake of it. And the goal of one post each day is a medium-term goal at best; until we have a bigger Content Team that won't be possible anyway. Volunteers for various roles within the content team will be most welcome, by the way - anybody interested in that please do contact me.

    There are actually quite a range of subjects for articles which we would wish to post, and which we receive inquiries about, so to expand a little on that: I expect you will recall the recent articles on the Simarron fundraising, the Aviva contest, and the FDA hearings. There are always community fundraising and advocacy issues like that going on, in addition to the science articles, and articles about the experience of living with ME/CFS - and we will want to have regular articles about Phoenix Rising itself too, communicating about our volunteer staff, the organisation, and our projects - so I think there's more than enough important material to need a post each day to cover everything.

    My rough thoughts at this point are to have regular slots, such as (for example) a fundraising article every Tuesday, a review of the week's ME/CFS news on Saturday, a round-up of the best forum threads on Sunday, and other regular days for science articles and lifestyle articles. In that way, readers can stick to the type of articles that are of most interest to them, and hopefully having a lot more content shouldn't need to be overwhelming, nor should it mean a lower quality of writing. But these are just my own ideas: how this evolves will be a team effort, and it will depend to a great extent on the thoughts of members, volunteers and contributors. I look forward to hearing more views on this - and I especially look forward to hearing from people interested in contributing content or helping with proof-reading, editing, etc.:)
  2. Cort

    Cort Phoenix Rising Founder

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    Go for it Esther :). Change causes us to adapt and one positive outcome of all of this is bringing out more voices from the community; ultimately making it more effective. Bringing in more bloggers, is something, in retrospect PR should have been done long ago. Jody, for instance, has a touch and a focus that I just don't have. I hope to blog from time to time as well.

    Mark, by the way, is a good editor. You're in good hands.
    BEG and Sing like this.
  3. jenbooks

    jenbooks Guest

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    Mark, I suggest you establish some kind of independent volunteer editorial board and not all from Phoenix Rising. If patients start submitting lots of articles--for a bedridden patient on SSDI $50 is enticing--and then are accepted or rejected in what they perceive as a willy nilly way, there could be problems. There has to be a way to avoid favoritism and only post newsworth $50 blogs.

    Thanks for your other post, it's helpful. I'm sure the community would still like total openness re: why in the world the founder would leave.
    Wildcat and taniaaust1 like this.
  4. Enid

    Enid Senior Member

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    And do not let us forget (sans proof reading, plod science as it goes - you may be) - the thinkers who have the ability to rise above and put two and two together to resolve. Sorry Mark we part company here - it's sheer brilliance now.
  5. Mark

    Mark Acting CEO

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    I don't know how you have interpreted that from the board statement, or from anything I have said. Rusty, but this is not what I/we have said. The board have not commented on the issues behind Cort's departure from PR. As mentioned in the statement, the board will meet in January to prepare a statement, and we will be focusing on how we can all move forward together positively. You've asked a number of valid questions, and I hope we will be able to answer them in due course, but in the meantime I'll ask everyone to bear with us and try to avoid speculating or jumping to conclusions.
    jimells and Sing like this.
  6. Mark

    Mark Acting CEO

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    I expect we will be able to answer these questions to your satisfaction in due course, Firestormm. Perceptive remarks, and I'll reiterate that the board members are all firmly committed to financial and organisational transparency. Personally, I'm here purely as a volunteer, but I don't have any qualms about a non-profit organisation making payments to patients for valuable work that they do - some of us can afford to give our time for free, but it's more difficult for others. I think that you - and others - are right in highlighting that the important principle here is transparency. Incidentally, Phoenix Rising's low turnover means that there has been no legal requirement to date for us to publish accounts, but the board are of the opinion that we should do so nevertheless and we aim to do so as soon as we can.
    Firestormm likes this.
  7. Enid

    Enid Senior Member

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    We bear all, we welcome all, and very much all the scientists/medics battling to understand ME. Theory like Cort trying to understand & bring together brain/cognitive damage our way forward. (Though I must say my own brain has improved much recently).

    I do get very worried for those sucked into the psychos - it doesn't belong.So I'll ignore your what shall I say somewhat patronising comments if you will ignore mine.
  8. Mark

    Mark Acting CEO

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    The 'volunteer editorial board' sounds rather like the Content Team we are setting up. Editorial decisions regarding Phoenix Rising content are a Phoenix Rising matter, so I don't see the rationale for an independent board with members from outside Phoenix Rising, but the issues around 'commissioning' that you highlight will indeed need to be managed and I'm aware of that. We have been working this way for the last few months, actually, and I'm not aware of any such problems so far. I've been discussing with contributors what content we want, what changes or edits are needed, etc, and several good writers seem to be happy to donate their content, so I expect this to work well.

    I'm not sure that's true actually: some people want an explanation, but other people have posted saying that they do not want us to go into those issues, and a public dispute about these issues may not be in the community's best interest. As we've said, the board will be posting a further statement in January, and until then I can't comment on this.
    beaker, taniaaust1 and Nielk like this.
  9. Mark

    Mark Acting CEO

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    If there are specific examples of the personal attacks you refer to in forum posts, you should report them, of course. The board and volunteers at Phoenix Rising do very much dislike personal attacks of all kinds, and I think that this forum deservedly has a good reputation for taking a firm line on this question and for enabling intelligent debate free from abuse and personal attacks. We do have to also give room for members to express their views, of course, so it is sometimes a difficult job to balance these issues, but we do our best. It is quite possible that the moderation policy may in future evolve in the direction you suggest, and if we speak with researchers or physicians and find that they don't want to post here because they are uncomfortable with our moderation policy, then clearly that would be something we'd have to think about. I think we will always be 'partialist' in one sense though: we are not a 'neutral' organisation in the sense that we are patient-led and patient run and I think we will continue to come from a perspective that supports and gives voice to the concerns of ME/CFS patients.
    leela, Sea, Nielk and 1 other person like this.
  10. HowToEscape?

    HowToEscape? Senior Member

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    Thanks for sharing the info.

    My first thought is that you might want to think over paying a small fee for articles. My reasoning is that
    -- the site can't afford to pay enough for professional content, written by someone who is using their work time and needs to make a living from writing
    -- paying for some articles, even a token amount, is going to make people wonder if they're on the short end if they submit an article as a volunteer. It's not unreasonable, as the site needs some articles which have been proofread, revised and polished enough to put on the front page and it needs them on a regular schedule. But something being reasonable doesn't always make it a good business decision. One could try to work this one out, such as making the paid article a weekly thing with the understanding that PR is paying for keeping the front page active, even if unpaid articles may have greater depth or quality of content.
    -- there is an odd effect that people will put greater effort into a volunteer project where there's a need at hand than they would if being paid a modest amount. Volunteer firefighers are an example. By paying just a little for an article, it confuses the issue of whether its a volunteer effort for the benefit of people in need plus a benefit to one's name or just a job.

    You have a tough job to do; dealing with a disease which seems to target the CNS and managing a website is a wall to climb.

    Perhaps you could issue an appeal for articles and $2 contributions from readers? That would go a ways to keeping the site running while the board sorts out how to get a more permanent arrangement.
    voner and RustyJ like this.
  11. Mark

    Mark Acting CEO

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    As mentioned in the statement, the board continue to welcome article contributions from Cort, and as he's mentioned above, he hopes to blog here from time to time. He's still a forum member of course. So hopefully he will still be around on PR.
  12. Enid

    Enid Senior Member

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    That sounds a clear cut off (emotionally) to me. May you find all the answers.
  13. Mark

    Mark Acting CEO

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    Thanks for those thoughts. These concerns are understandable, and of course I've thought about these things, but as I've mentioned above, these issues haven't turned out to be a problem so far. Some people make part or all of their living from blogging, others are just getting started and are happy to have the opportunity to develop their skills. Some are already professional writers, others need more support, editing and proof-reading. Some people just don't have the time to contribute unless they are paid, while others are more than happy to contribute articles for nothing. You're right that contributors need to be sensitively managed to avoid the potential for resentment or misunderstandings, but I think that can be done. And high quality content does drive page-views, which drives donations...so paid content can also be a good investment.

    The board have looked at all these issues, and at our finances, and the formula I've described above is one that I believe to be sustainable: we should be able to pay for 2-3 articles each week and continue to support the rest of our projects and infrastructure, but we will of course review all this regularly and there will be more transparency on these issues in future so that members who are interested can have a better understanding of why we take the decisions we do.
  14. taniaaust1

    taniaaust1 Senior Member

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    Many with ME/CFS arent working at all so working slowly on an article is actually a way to be usefully killing time... so many can afford to give this time for free.

    Im not comfortable with the site paying out for articles (unless its done by one who has a big following who will attract people to the site or by someone who is well known in the field.. eg one of our specialists)... or say a post on a study which hasnt been published eg like the Klonopin study in us that Cort put together.. that was well worth paying to put together a study and publish the results. I'd love to see no biased people transparently put together more studies on how various supplements or meds work in us and publish that at the site.

    I do view the importance of fund raising for ME/CFS EXTREMELY HIGH.. but once again I want to say I think only the most important things should be focused on and a think a weekly posting on this could make people miss the most important things whether its something which needs urgent fundraising like Simarron fundraising or votes urgently needed to help an org in a competition (I think standing as one and helping our orgs in these competitions is important). I'd hate to see the most important things being overshadowed by the less important ones which from what you said I think is going to happen.

    Note too that this site doesnt end up doing much of same old of what the ME/CFS (SA) branch site does (does the one who pulls the news together from around the world do it for free there? As far as Im aware he's a volunteer).. note I arent attracted to go there and read its blogs daily, (I wonder how many here are?) thou its certainly a good blog it doesnt hold any special appeal to me to draw me there.

    If someone is just seeking a daily good news blog.. the ME/CFS Sth Australia site would be an excellent place to go http://sacfs.asn.au/. (I want to see more then just a good blog thou) . It would be a piity to be publishing blogs which generally arent really singing to people here.. just the normal kind of stuff found online.. while paying people to do them.. it kind of is grating that the site is planning to waste the money willings like that. (The SA ME/CFS site is very good on its blog for news but doesnt advovate for things such as Aviva etc so this site could fill in gaps like that). Im not into lifestyle blogs.. I can just get any lifestyle advice directly throu the forum as all of us can.

    We also go to the PR forums for the latest news (or the ME/CFS SA site).. so I dont feel like we need to have the same things repeated in a blog.. unless its very important. As to highlighted the best forum post of the week... some may actually feel uncomfortable about that if its their post... not all are comfortable in the highlight. I think you need to clarifiy if you plan to do that that you will seek permission of the person to make sure they are comfortable in their original post being highlighted in that way (thou I do understand this is a public site..but I still think it would be highly rude to take someones post from a forum and make it be highlighted for the sites blog without making sure they are fine about it).

    Sorry Im disappointed.. I cant remember paying people to do blogs specifically being mentioned as being one of the things the competition money would be spent on when people were being encouraged to be voting. There where other things which sounded good to be spending the money on.. which were mentioned. There I said it now.. I was containing my feelings some about how I feel about that paying to any tom dick or harry for an article.
    .....

    How about also thinking about this site finanically.. that comp money isnt only going to last long to help support this site and its costs. Maybe a wee bit of the money could be put into some idea to help bring some money back to reput back into the site. I personally think it would be wise to do that and be doing some future planning too to make sure this site stays alive (what if the sites tech gets too sick for weeks and u need to actually pay for someone to temporary hold this site together or whatever. I know this is a non profit site but please think ahead and have some plan in place for crisises which could use more PR money then normal). So anyway a big question I have which I'd like answered at some point by the board.. is any of the winnings going to go towards making this site into an even more financially substainable site? which is then also capable of more growth..hence more power for advocacy or whatever .

    There are many great brains on this site still (even if they are full of holes!!). Im sure people could come up with some ideas for this non profit group to be also having a bit more money come back in. If this isnt considered too.. what will happen when u guys get used to running this site on this extra money from the comp and then this money runs out? Will we then loose these new things being planned right now? Ask yourselves if any changes u make which will consistantly use money into the future.. if they will be sustainable if u didnt have the extra money to play around with.

    Someone asked the other day what will be done with the extra money and was answered by a post on the general goals/aims of PR. That to me didnt answer the question at all on HOW exactly the money would be spent. Im really looking forward to hearing more about things and looking forward to this site becoming more transparent. I was looking not long ago at some of the financial statements of well known charities (not ME/CFS ones) and some of them are so so transparent cause they really break down the costs and expendures.. so people can really see where their finances and donations go to. (I was actually surprised to see just how transparent some huge orgs can be)

    Sorry if my post sounds harsh.. you guys I know are putting a lot of work in and I thank you for that. But can a vote be set up so you can more better guage if your ideas for this site are good ones or not. I think its highly important that any thing done, that the "majority" of this community thinks its a good idea too.
    voner and RustyJ like this.
  15. Esther12

    Esther12 Senior Member

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    Yeah, I think this could be a problem. I know this is all just developing at the moment, and we don't know the specifics, but $50 seems too high for an initial figure.

    A lot of people are pretty hard pressed for money, and unable to earn it in normal ways. If the pay is too generous, it could end up being a dangerous situation where people feel quite desperate to get a blog article commissioned just so that they can pay for food and shelter.

    Personally, I think it would be best if any pay was low enough to be more of a little bonus for doing something one would do anyway, and maybe an incentive to try to produce something of slightly higher quality, or more carefully written, than one would otherwise. I understand PR wanting to help support those who contribute to it, but I think it's probably best to be cautious about introducing payments.

    Having said all that, some people have done some really amazing pieces of work on here, and for them $50 seems cheap! (But those suckers are already doing it for free already!)

    I've talked myself out of it now. Maybe I will try to turn some posts in to articles... I am quite used to writing as part of a discussion though.

    Sorry for having all my attention drawn to the prospect of getting $50! See what could happen here Mark... I've got dollar signs in my eyes.
  16. Enid

    Enid Senior Member

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    What on earth is going on here - like some sort of love in - nothing to do with the progess of understanding ME, saddens the whole community - as does the divorce of the founder of PR.

    Anyone ever thought ME sufferers actually had feelings. Apparantly not.
  17. Mark

    Mark Acting CEO

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    Indeed. :)

    I think the articles we have paid for and will pay for in the future are articles such as you describe. Just being paid for your work writing an article doesn't entail a conflict of interest: that would only apply where payments related to the subject being written about and were undisclosed.

    You're quite right that there's a balance to be struck to make sure we focus on the most important issues and don't bombard people in a way that detracts from that focus. I'm sensitive to that and I'm sure our editorial policy will continue to aim to take that into account.


    The readers of the blog posts are a quite different group to the forum members at present; there is an overlap of course but a lot of people read the blog that don't visit the forum. We do know quite a lot about this from server stats and all of that is quite a big factor in how we manage things. There are lots of evolutions and improvements we want to make in these areas and the board have to look at the big picture. I would like to make stronger links between the forums and the blog posts because they could promote each other better. Actually, forum members have appealed in the past for summaries of news and summaries of best forum threads, but how we might do that remains an open question and we'll discuss it all openly with forum members.

    Quite right, we'll have to consult about these issues.

    I sense your fears about this but I don't think you need to worry. If you were happy with the articles in the last few months then I don't think there will be a huge change from that. I don't think the money for this will be coming from the Chase competition money. Articles actually drive donations in a significant way, so when we pay $50 for an article we will often get more income than $50 as a result: this is more like an investment than simply a cost. And we won't be paying any tom dick or harry: we will be paying for high quality content from writers that we know and trust.

    The board are doing all of that, of course: that's at the core of our responsibilities. We do have access to a lot more information than members do about these issues, and that informs our strategy and decisions. We would very much like to open up that information and be as transparent as we can be, but taking informal data that's constantly changing and turning that into information that can be published is a significant task: it will take time and effort.

    I do hear your concerns, and you've raised some very valid points which we're aware of and will be monitoring and managing as we go along. I don't think you should fear this though: this is not a big or sudden change (part of your concerns are because you don't know all the details about how things have been structured in the past), and we'll be open to feedback from you and other members on what we do and whether it's working or not.
  18. Enid

    Enid Senior Member

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    Well some way of killing time if one has the luxury, get with it, pull together if you any interest whatsoever in ME and not internal politics apparently going on.
  19. Mark

    Mark Acting CEO

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    It's very sad for everyone Enid. It's especially sad for those of us who have worked closely with Cort for years because we share his commitment to progressing the understanding of ME.

    As we've said in our statement, we do very much regret that this announcement has happened in a way that has caused some confusion and distress. It's difficult for everyone, and we know that some people are upset. Even moderators and board members have feelings. Please try to understand that this is difficult for everyone, there is no malice involved, and we are all just trying to move forward positively.
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  20. taniaaust1

    taniaaust1 Senior Member

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    Cool.. thanks for your post Mark :)

    Thanks for pointing that out... that's true. I myself used to just read Corts blogs and wasnt involved in the forum at all.

    Thanks for explaining that. That's reassuring to all know.

    I dont think Ive read many of the articles in the last few months at all (unless there was far less) due to not many drawing my attention and just being things I could expect to read on forums. I think Ive ignored most of them (I thou cant even remember how many there's been). Ive always been one who's just mostly looked out for Corts post.). That area has fallen short for me the past few months (whether it was from lack of good blog posts or what.. I dont know). The only blog right now I can remember I got real excited about the past few months was the benzo one.

    I actually almost asked what on earth was going on with the blogs due to the change in things which I'd noticed for quite a while now.. was missing Corts posts and there was like a hole in this area.

    Nods.. I do agree that would be good. but in the forums. My suggestion would be to list the best forum threads in the forum area (unless the non forum people generally have an interest on what is happening in the forum?)

    Summary of news sounds good to me too.. but news of the "major nature" doesnt come out weekly and if you are weekly trying to find enough news to do a PR news blog summary of the news of the week.. i think you wil be really scrapping at the bottom of the barrel unless you are including some very minor news things to take up the space which then would only affect the quality of the article.

    I suggest rather then weekly summary, a monthly PR blog post of a quick run down of the highlights of what was major ME/CFS news which includes links for more info on each thing eg new ME/CFS study which just was published or a link to a ME/CFS winning a comp news article or whatever. I suggest to keep things simple and stick to the major things for the quite sick patient group. Of cause a summary of the news wouldnt stop a very major event article being posted during the month on PR eg run down on an important ME/CFS conference which happened (this is the kind of area which the SA ME/CFS site news often miss) or whatever the big news was..
    GcMAF Australia likes this.

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