Phoenix Rising Board Statement Re: Cort Johnson’s Announcement

December 30, 2012

The Phoenix Rising board members are all extremely sad to learn of Cort Johnson’s decision to leave Phoenix Rising. Cort’s writing, and his vision of a rich and reliable website as a resource for ME/CFS patients, are what attracted all of us to volunteer for Phoenix Rising, and the board is determined to maintain the aims and principles of the organization which he established. The Phoenix Rising board wishes to thank Cort Johnson, as the founder of Phoenix Rising, for his hard work and tireless advocacy for ME/CFS patients, and we wish him all the best in his future projects.

Until Cort notified us on December 24th of his plans to launch a new website, we were under the impression that Cort would be continuing to post articles for Phoenix Rising according to the arrangements we had agreed with him in recent months. Unfortunately the board has not been able to meet during the holiday period due to family commitments and illness and as a result we are not able to respond at this time to all the questions that members are understandably asking. We deeply regret that this has meant that the manner of the announcement of Cort’s departure from Phoenix Rising may have caused confusion and concern within the Phoenix Rising community. The board will be meeting in early January to prepare a further statement, which will focus on the future priorities we envisage for Phoenix Rising as we all aim to move forward positively in the New Year.

A number of members have asked questions about various financial and organisational matters. The board would like to state clearly that our goal is for Phoenix Rising to have full financial and organizational transparency. As a part of this goal, we are currently searching for additional volunteers to help with Phoenix Rising’s operations, and in particular we are looking for an accountant with non-profit experience to prepare financial reports. We are also committed to increasing the participation of members in determining the priorities of the organisation, and we will be consulting with members about this early in the New Year.

Although Cort is moving to a new website, he remains welcome as a forum member and he is also still welcome to submit articles for publication on Phoenix Rising should he wish to do so. We would also like to take this opportunity to invite other community members, bloggers, physicians and researchers to submit articles for publication on Phoenix Rising. As a key part of our mission, we want to continue to enable, encourage and support ME/CFS patients in writing about their experience of ME/CFS and about ME/CFS issues. Some of these articles are donated, and others are commissioned and paid for by Phoenix Rising. Our standard rate for commissioned content is $50 per article, and higher rates can be negotiated for longer articles. Please email mark@phoenixrising.me if you are interested in writing for Phoenix Rising.

We sincerely hope that everyone will bear in mind that all of the volunteers at Phoenix Rising, including the board, work as unpaid volunteers and have ME/CFS, and our energy reserves are running low right now. We have faith in the Phoenix Rising community to pull together during this difficult time and help each other as we all come to grips with this change.

We also hope that we can all put aside our differences during the end of 2012 and the beginning of 2013 and as the saying goes “Say goodbye to the old and welcome in the new”. The board would like to wish all of our members and readers a Happy New Year and we sincerely hope that 2013 will be a positive and healthful year for all of us.

Phoenix Rising Board of Directors
Adin Burroughs
Karen Luoto
Mark Berry

 

Support Phoenix Rising

 

 

80 comments

{ 80 comments… read them below or add one }

Esther12 December 30, 2012 at 7:25 pm

Sorry to be distracted by what was probably meant to be a trivial throwaway line but… $50 for writing stuff on the internet about CFS? Surely some mistake? Sounds difficult to work out which articles would be worth commissioning too.

If that stands I'm definitely going to try to turn some of my rambles into something more coherent!

Mark December 30, 2012 at 7:53 pm
Esther12

Sorry to be distracted by what was probably meant to be a trivial throwaway line but… $50 for writing stuff on the internet about CFS? Surely some mistake? Sounds difficult to work out which articles would be worth commissioning too.

No mistake Esther. We think it's certainly a generous rate, but also a fair rate for high quality articles. We compared to blogging rates elsewhere and we did want to offer a good rate both to attract high quality and also because our bloggers are all people we want to be able to support financially – offering patients an opportunity to develop their writing skills, gain a platform, supplement their income, all of these things fit well within our charitable objectives as an organisation so it's a win-win-win model as I see it.

The rate does include payment for monitoring and responding to questions in the discussion, and of course some articles require a lot of research, watching video-conferences etc. So for articles like that in particular, it's a reasonable rate IMO.

In terms of working out which articles to commission, and from whom, those are relationships we develop and decisions we make on an ongoing basis. This is a fairly new model and it's still evolving, so details are likely to change. Maybe we'll pay less for some articles, maybe some of our bloggers will donate them, maybe we'll pay more for others. We'll see what works. As it stands, it's mostly me who'll be making those decisions for the time being. But I do hope that will change soon enough – I will need a team of editors, proof-readers, publishers etc and I hope somebody will emerge as editor. It would be nice if we could afford to pay that as a salaried position one day; we may be able to pay a little something in the short term. Not everyone can afford to do such work on a purely voluntary basis.

If that stands I'm definitely going to try to turn some of my rambles into something more coherent!

And I hope you and other forum members will take up the opportunity enthusiastically. :) Our budget won't stretch to paying for all content (I would like a target of at least one article each day, about 3 each week being paid), and I do envisage less experienced writers being paid less, initially, so this is all fairly fluid at this point but it's certainly an opportunity and we have many excellent writers here, so I hope this model proves a successful one for us all.

K2 for Hope December 30, 2012 at 8:10 pm
Esther12

Sorry to be distracted by what was probably meant to be a trivial throwaway line but… $50 for writing stuff on the internet about CFS? Surely some mistake? Sounds difficult to work out which articles would be worth commissioning too.

If that stands I'm definitely going to try to turn some of my rambles into something more coherent!

PR gets several blogs that are donated as one would donate a dollar amount. That also helps to keep the website running and still give content to the community.

There are also many posts in threads that are considered to be of much value and those posts are unpaid. Look at all the posts from Richvank, and he never got paid for any one of his posts.

So, one has to decide if the article that is meant to be published is something to be possibly used as a donation or something that may have great value to the community as a journalist would do….

Nielk December 30, 2012 at 8:10 pm

Thank you Mark for this statement.
I appreciate all the work that Cort, you, the board members and administrators have done to make PR the great place it is serving the ME/CFS community.
I am sorry about this separation and wish everyone good luck in the future.

Mark December 30, 2012 at 8:27 pm
Nielk

Thank you Mark for this statement.
I appreciate all the work that Cort, you, the board members and administrators have done to make PR the great place it is serving the ME/CFS community.
I am sorry about this separation and wish everyone good luck in the future.

Thanks Nielk. We are all very sorry and upset that this has happened, but we have to make the best of it and move forward positively. I suppose we're all well accustomed to doing that anyway…

Dreambirdie December 30, 2012 at 8:45 pm

Thank you, Mark for sharing this information with us.
And thanks even more for all the work you all do. I wish for a smooth stress-free transition for all of us.

taniaaust1 December 30, 2012 at 11:35 pm

Thanks Mark for posting this thread and making a statement.

Our budget won't stretch to paying for all content (I would like a target of at least one article each day, about 3 each week being paid),

Mark.. may i make the suggestion that you start off with only paying for one article per week and choosing the best to be published and working up from there. I say this as the best thing about the articles which have been always posted on this site is the actual quality of them. We have always been able to trust that any article which is put out by PR is of extremely good quality and which wont be wasting our time and energy to be reading. To this point, there has never (oh except one) been a PR article I didnt enjoy reading.

I know it would put me off if the quality of the articles fell for more articles to be posted and I think great care has to be taken that the article quality is maintained.

I also know the sickest in our community may end up feeling overwhelmed by articles if suddenly there is an article daily…. maybe that is fine for a non ME/CFS community but it could be too much for many of a very sick community..

Please choose QUALITY over quanity when it comes to the articles (if we want to just read a lot of stuff..there is plenty of stuff to read on the forums).

Take care not to go making too much change here too fast and overwhelming yourselves.

RustyJ December 31, 2012 at 12:05 am

So, essentially you are saying Cort didn't think he was going to get paid enough as the reason for his departure. This doesn't paint Cort in a very pretty picture.

Criticisms over the last eighteen months that he appeared to be more interested in making a dollar off the cfs community rather than helping find a cure appear to have been on the mark. Is this a case of one more person looking to make a living off us?

I still don't understand where the money was going to come from. By the sound of it, Cort was asking for a lot. Where was this money going to come from?

RustyJ December 31, 2012 at 12:13 am
Mark

Until Cort notified us on December 24th of his plans to launch a new website, we were under the impression that Cort would be continuing to post articles for Phoenix Rising according to the arrangements we had agreed with him in recent months.

Had Cort removed himself from the board some months prior? This statement would appear to hint at that. Why were we not informed then?

The arrangements with Cort to post articles, were they paid for by PR? How far back does this go? Is the board aware of any additional payments for those articles from outside agencies. Was Cort paid to write those articles? By whom?

Many members, not all, I note, read Cort's articles because they think they are unbiased. If they were being paid for, they were not unbiased.

Further more, from the statement, it appears that the board is unable to detail payments to the non-profit entity, which also needs explaining. If this is indeed the case then the books will have to be audited, not just looked at.

Firestormm December 31, 2012 at 2:38 am

I am not sure that Cort was ever on the Board, Rusty. One aspect of transparency would of course be the publication of financial accounts – something that Mark has talked about above.

I have never really got a handle on the 'blog' aspect of this forum. And this notion of payment for what I would consider to have been a voluntary effort – doesn't immediately sit well with me either I have to say.

But if it's the 'norm' and if in future these things are made plain to us all – I'll go along with it. I also have some concerns with the process by which members (and 'outsiders') come to be appointed to the Board and what that Board is responsible for.

Until such time I suppose as this charity is more formally dedicated, and some form of voting occurs, I really can't consider PR to be such a body.

To me it has always been and will remain a free and public forum.

I hope we will hear more from the Board about all of this in the near future. I am well aware of how much it can 'cost' for people who themselves are sick to 'step up to the plate'. More than aware.

However, if things are set-down properly at the start then these procedures will serve to protect the Board as well as enable members (whose status also needs to be laid down) and those donors to feel more secure.

Documentation is a pain in the arse but necessary and indeed essential. Thanks for the statement, Mark and co. I wish you all the very best and will lend a hand if you need one and I am able.

Fire :cool:

Enid December 31, 2012 at 10:51 am

It's a wow wow situation – this site (unmatched) is the greatest source for all – science, aids, companionship, humour – let us keep it this way. And recognise our best in ME – eg Cort's foundation and continuing commitment.

Enid December 31, 2012 at 11:19 am

Yep not too keen on science findings now – hovering to accept views of what one can only describe as mumbo jumbo ( in case it might upset) – too full of reported "science" findings in GET/CBT – I could well be struck off PR tomorrrow – not apparently following the thread – what a wish the current ambience in PR are very anxious to – what can one say – nothing more than just do not upset (blow science) and ignore.

jenbooks December 31, 2012 at 1:22 pm

$50 an article doesn't sound very well thought out. You should post guidelines, length of articles, and submission guidelines. It seems a little odd that this site is now paying for blog postings and articles. I'm not sure it's a direction that makes sense for a nonprofit site whose main areas of activity are the forums, and formerly Cort's blog postings. It's going to take more work than you realize to commission high profile postings, and it's going to hurt feelings of community members when they want to be paid their $50 for postings that really don't deserve it.

The whole thing still seems completely bizarre, and much will probably never be explained. I hope you weren't planning on paying Cort only $50/posting. He probably deserves $1000/posting. Professionals science writers get $1-4/word, depending on what venue writing for ($1 on web) and how high profile (very high profile, $4/word). In addition, professional bloggers at most paid sites get bonuses for eyeballs–sometimes very lucrative.

It doesn't sound well thought out, and it sounds like you shot yourself in the foot, by not paying Cort enough.

jenbooks December 31, 2012 at 1:32 pm

In addition, I think your stated goal should be to be transparent enough to make it onto Charity Navigator's approved list. And if any of the board members or other volunteers are paid in dollars, for anything, those amounts should be made public in January 2013. Not just the $50 for blog postings. "Administrative fees" must be public now. And not late in 2013, but in January. If anybody is being paid, they already know what they're getting.

jenbooks December 31, 2012 at 1:32 pm

In addition, I think your stated goal should be to be transparent enough to make it onto Charity Navigator's approved list. And if any of the board members or other volunteers are paid in dollars, for anything, those amounts should be made public in January 2013. Not just the $50 for blog postings. "Administrative fees" must be public now. And not late in 2013, but in January. If anybody is being paid, they already know what they're getting.

Enid December 31, 2012 at 1:48 pm

And you have no control of my input Mark (whoever popped up on a few occasions). This is about ME and those who seek to understand ONLY.

Three times bow to your immensity as so many here fight/bear with (knowing not so) your freewheeling capacity for ignorance posted – it just might upset someone who is utterly ignorant.

This is intolerable for someone who has spent so many years researching/experiencing ME – has sought to understand – where are you guys – on an ego trip.

Mark December 31, 2012 at 2:21 pm
jenbooks

In addition, I think your stated goal should be to be transparent enough to make it onto Charity Navigator's approved list. And if any of the board members or other volunteers are paid in dollars, for anything, those amounts should be made public in January 2013. Not just the $50 for blog postings. "Administrative fees" must be public now. And not late in 2013, but in January. If anybody is being paid, they already know what they're getting.

As we mentioned in the statement, our goal is full transparency and you are right that we want to make it onto Charity Navigator's approved list. As we've also mentioned in the statement, we will need some accountancy support in order to achieve that, but your question about pay for board members or other volunteers, administrative fees etc, is easily answered now: none of the current board members or volunteers have received any such payments to date, we have all worked in a purely voluntary capacity. I am not sure what exactly you mean by "administrative fees" but if you are referring to the board members, none of us have ever taken any such payments and we don't expect to do so: we are all volunteers. We will post more information about these matters when we have accurate information we can disclose.

Regarding the idea of paying Cort $1000/post, of course we could not and cannot pay Cort money that we do not have. We did investigate standard rates and formulas for blog posting, and calculated based on our site viewing statistics, before setting the rate. Guidelines on the submission process and article length are in development. Those who have already contacted me about writing articles have said they will be happy to donate their articles, and I expect high quality content from those people. I don't think it's unreasonable, though, to make some payments to contributors and volunteers in recognition of the time they put in. Personally, I am and always have been here on a purely voluntary basis, and I have never taken and never will take any payment in relation to my work for Phoenix Rising, but if we are able to support patients who volunteer their services by paying them something for the valuable work they do, I think that's a good thing.

Mark December 31, 2012 at 2:26 pm
Dreambirdie

Thank you, Mark for sharing this information with us.
And thanks even more for all the work you all do. I wish for a smooth stress-free transition for all of us.

Thanks for you kind words, DB. I agree with your wish and will do what I can to make sure it's fulfilled. :)

Enid December 31, 2012 at 2:37 pm

Mark you give your time with restricted energies in this very important site – is it possible we can bring Cort somehow back into OUR fold. He has so much to bring (and has to live).

Mark December 31, 2012 at 2:44 pm
taniaaust1

Thanks Mark for posting this thread and making a statement.

Mark.. may i make the suggestion that you start off with only paying for one article per week and choosing the best to be published and working up from there. I say this as the best thing about the articles which have been always posted on this site is the actual quality of them. We have always been able to trust that any article which is put out by PR is of extremely good quality and which wont be wasting our time and energy to be reading. To this point, there has never (oh except one) been a PR article I didnt enjoy reading.

I know it would put me off if the quality of the articles fell for more articles to be posted and I think great care has to be taken that the article quality is maintained.

I also know the sickest in our community may end up feeling overwhelmed by articles if suddenly there is an article daily…. maybe that is fine for a non ME/CFS community but it could be too much for many of a very sick community..

Please choose QUALITY over quanity when it comes to the articles (if we want to just read a lot of stuff..there is plenty of stuff to read on the forums).

Take care not to go making too much change here too fast and overwhelming yourselves.

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.:)

Cort December 31, 2012 at 2:47 pm

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.

jenbooks December 31, 2012 at 2:49 pm

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.

Enid December 31, 2012 at 2:57 pm

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.

Mark December 31, 2012 at 2:57 pm
RustyJ

So, essentially you are saying Cort didn't think he was going to get paid enough as the reason for his departure. This doesn't paint Cort in a very pretty picture.

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.

Mark December 31, 2012 at 3:07 pm
Firestormm

I am not sure that Cort was ever on the Board, Rusty. One aspect of transparency would of course be the publication of financial accounts – something that Mark has talked about above.

I have never really got a handle on the 'blog' aspect of this forum. And this notion of payment for what I would consider to have been a voluntary effort – doesn't immediately sit well with me either I have to say.

But if it's the 'norm' and if in future these things are made plain to us all – I'll go along with it. I also have some concerns with the process by which members (and 'outsiders') come to be appointed to the Board and what that Board is responsible for.

Until such time I suppose as this charity is more formally dedicated, and some form of voting occurs, I really can't consider PR to be such a body.

To me it has always been and will remain a free and public forum.

I hope we will hear more from the Board about all of this in the near future. I am well aware of how much it can 'cost' for people who themselves are sick to 'step up to the plate'. More than aware.

However, if things are set-down properly at the start then these procedures will serve to protect the Board as well as enable members (whose status also needs to be laid down) and those donors to feel more secure.

Documentation is a pain in the arse but necessary and indeed essential. Thanks for the statement, Mark and co. I wish you all the very best and will lend a hand if you need one and I am able.

Fire :cool:

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.

Enid December 31, 2012 at 3:16 pm

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.

Mark December 31, 2012 at 3:24 pm
jenbooks

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.

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.

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.

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.

Mark December 31, 2012 at 3:37 pm
In Vitro Infidelium

Extending the source of contributions to beyond patients and carers is an extremely worthwhile ambition. However if PR is serious about this, there will need to be a significant change in posting policy if there is to be a genuinely open invitation to researchers. It is entirely a matter for the PR trustees, but unless there is a very clear policy of ‘no personal attacks’ on anybody (as distinct from criticism of work) on academics no matter what their perspective, then any stated wish for researcher contribution will be hollow, and partialist at best.

IVI

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.

HowToEscape? December 31, 2012 at 3:37 pm

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.

Mark December 31, 2012 at 3:40 pm
Enid

Mark you give your time with restricted energies in this very important site – is it possible we can bring Cort somehow back into OUR fold. He has so much to bring (and has to live).

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.

Enid December 31, 2012 at 3:44 pm

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

Mark December 31, 2012 at 3:52 pm
HowToEscape?

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.

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.

taniaaust1 December 31, 2012 at 3:57 pm
Mark

- some of us can afford to give our time for free, but it's more difficult for others..

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.

My rough thoughts at this point are to have regular slots, such as (for example) a fundraising article every Tuesday,

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,

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.

Esther12 December 31, 2012 at 4:03 pm
jenbooks

for a bedridden patient on SSDI $50 is enticing

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!)

Cort

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.

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.

Enid December 31, 2012 at 4:23 pm

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.

Mark December 31, 2012 at 4:31 pm
taniaaust1

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.

Indeed. :)

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 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.

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 for me (hence then bringing down the importance of the whole thing for me when one has to waft throu lesser things).

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.

We also go to the forums for the latest news.. so I dont feel like we need to have the same things repeated in a blog.. unless its very important.

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.

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).

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

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.

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.

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.

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.

Enid December 31, 2012 at 4:38 pm

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.

Mark December 31, 2012 at 4:39 pm
Enid

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.

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.

taniaaust1 December 31, 2012 at 4:57 pm

Cool.. thanks for your post Mark :)

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

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

. 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.

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

. 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 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.

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.

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..

Dainty December 31, 2012 at 4:58 pm

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. :)

Enid December 31, 2012 at 5:02 pm

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.

Dainty December 31, 2012 at 5:11 pm
Enid

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.

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?

Enid December 31, 2012 at 5:25 pm

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. ?

RustyJ December 31, 2012 at 6:25 pm

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".

beaker December 31, 2012 at 6:33 pm
taniaaust1

Cool.. thanks for your post Mark

<snip>

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..

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.

snowathlete December 31, 2012 at 7:00 pm

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.

AFCFS December 31, 2012 at 8:04 pm
RustyJ

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".

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:

Cort

Health Rising is not a non-profit. Doing another non-profit is not high on my list right now :).but maybe in the future…

Simmaron is helping to sponsor the new site. Hopefully the site will get more sponsors which will enable me to do more things…..I have a long list.

I'm very proud to have Simmaron as a sponsor. .

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

Dainty December 31, 2012 at 8:55 pm
Enid

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. ?

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?

MishMash December 31, 2012 at 9:08 pm
AFCFS

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

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.

RustyJ December 31, 2012 at 9:23 pm
MishMash

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.

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.

MishMash December 31, 2012 at 10:06 pm
RustyJ

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.

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.

RestingInHim December 31, 2012 at 11:06 pm
Cort

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.

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!

Cort January 1, 2013 at 4:52 am
RestingInHim

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!

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.

beaverfury January 1, 2013 at 7:06 am
RestingInHim
Cort

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.

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!

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.

Sing January 1, 2013 at 8:29 am

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!

K2 for Hope January 1, 2013 at 3:33 pm

Oh, Sing:

Imagine the day when Phoenix Rising is only used as a social outlet! What a beautiful dream! :angel:

Dainty January 1, 2013 at 5:16 pm

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.

Mark

As we mentioned in the statement, our goal is full transparency and you are right that we want to make it onto Charity Navigator's approved list. As we've also mentioned in the statement, we will need some accountancy support in order to achieve that, but your question about pay for board members or other volunteers, administrative fees etc, is easily answered now: none of the current board members or volunteers have received any such payments to date, we have all worked in a purely voluntary capacity. I am not sure what exactly you mean by "administrative fees" but if you are referring to the board members, none of us have ever taken any such payments and we don't expect to do so: we are all volunteers. We will post more information about these matters when we have accurate information we can disclose.

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. :(

wdb January 1, 2013 at 5:30 pm

Dainty nothing has been removed, there are two pages of archive listings for December 2011, it's on the second page: http://phoenixrising.me/archives/date/2011/12/page/2

And have a think who the employee refered to might be.

Mark January 1, 2013 at 5:49 pm
Dainty

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. :(

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.

Ember January 1, 2013 at 6:08 pm
Mark

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.

Cort himself has been candid about his salary concerns: http://forums.phoenixrising.me/inde…ving-contest-to-start-soon.19155/#post-293061

Mark January 1, 2013 at 6:14 pm

OK, I've reviewed the article and it states Cort's rate of pay at the time of writing about a year ago as $500/month, which is correct to my recollection. It also states an approximation of overall monthly costs at the time of £1200/month, which includes Cort's pay and is a little out of date.

It seems that the original article was replaced by Cort on Dec 15 2011, apparently to correct a broken link, and although the content of the article was replaced at that time, the article does exist in several other places, as you've found. If I recall correctly, that article looks like one that was also sent out as an email around about the same time.

Dainty, I hope you're now satisfied that there was no attempt to conceal the information in that post, either by the editing/removal of the post or by my comments above about the voluntary status of the board and volunteers. If there's anything in all this that you're still uncertain about, please do reply and I'll do my best to clear up any confusion that may remain.

Dainty January 1, 2013 at 6:38 pm

I do now see that the post was not removed. I apologize for that…I searched, I could not find it except by the above specified means, and thus reached the logical conclusion. I can only blame brainfog.

Mark

Dainty, I hope you're now satisfied that there was no attempt to conceal the information in that post, either by the editing/removal of the post or by my comments above about the voluntary status of the board and volunteers. If there's anything in all this that you're still uncertain about, please do reply and I'll do my best to clear up any confusion that may remain.

I am not fully satisfied. Rusty was asking a specific questions about Cort being paid for the articles, and asked how far back it goes. Your response was assurance that none of the current board members or volunteers are being paid. It was the truth, yes, but it left out an extremely important part – the part relating to rusty's question. If you cannot disclose that, then you should say as much rather than explicitely saying you are able to answer and then giving an answer that reasonably implies no salary.

Mark January 1, 2013 at 7:19 pm
Dainty

I am not fully satisfied. Rusty was asking a specific questions about Cort being paid for the articles, and asked how far back it goes. Your response was assurance that none of the current board members or volunteers are being paid. It was the truth, yes, but it left out an extremely important part – the part relating to rusty's question. If you cannot disclose that, then you should say as much rather than explicitely saying you are able to answer and then giving an answer that reasonably implies no salary.

Dainty, my post #19 above, which you quoted, was a response to jenbooks, not to Rusty.

My response to Rusty, who has asked a lot of questions, both in this thread and elsewhere, was in #26 above, and I said:

…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.

A lot of questions have been asked, and I'm afraid I/we can't answer them all in detail at this time. I was cautious about answering all the questions about Cort's pay at this time for a variety of reasons, but basically I do not want to say anything that is inaccurate or incomplete. If I had given partial information about Cort's pay, you could make the same complaint that I was being misleading if you later discovered some other detail about Cort's remuneration or expenses that I failed to mention. So if I/we are going to answer questions like these, we must do so carefully and accurately and give the fullest answers that we can.

This is why the board made a statement explaining that we will have to meet and review carefully before making any statements, and asking everyone to bear with us. The timing of all this, during the holiday season, was unexpected, and we're doing the best we can. I've done my best to answer questions on this thread where I feel I can do so accurately and without controversy, but perhaps it is better if I just say nothing further until we are in a position to publish full accounts.

RustyJ January 1, 2013 at 7:41 pm
Cort

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.

Well I guess one of the reasons is that there might not have been enough money to go round, especially if regular payments, and perhaps irregular payments, were eating away at the available funding.

Also, the mind set of the board is different. Now it appears to be more like: 'what can we do for the patients – we are prepared to work as volunteers for the betterment of the community.'

Dainty January 2, 2013 at 2:23 am
Mark

I've done my best to answer questions on this thread where I feel I can do so accurately and without controversy, but perhaps it is better if I just say nothing further until we are in a position to publish full accounts.

Yes, at times posting more can create more confusion. And, Ido realize you've spent a lot of time in this thread with many other things to do.

As I said in my other post, I have no doubt PR is headed that way and I'm glad for it. Saying so much while leaving out certain factors is always a risk for people filling in the blanks.

Mark January 3, 2013 at 12:43 am

A discussion about moderation policy that started on this thread has been moved to the Moderation forum:
http://forums.phoenixrising.me/index.php?threads/moderation-of-personal-attacks.21166/#post-322324

Since some members seem to be thinking that Cort's departure might suggest a possibility of changes of direction in areas like forum moderation, I'd like to make it clear that there is no reason I can see why this should be the case. Cort hasn't been involved in any way in forum moderation and administration, or the oversight of forum moderation and administration, for over a year now (quite a bit longer if I recall correctly) and all the staffing in those areas remains as it was. We don't have any particular plans to change how the forums operate. There are one or two thorny issues in the rules that we might want to improve – there's always room for improvement – but my feeling is that's going to be a much lower priority for the organization than some of the other areas we want to develop.

I think there are going to be some significant changes and exciting new developments in the coming months, but most of those have been in our plans for a while. As a very rough guide to what I think we're aiming at (this is just my own summary of areas we're looking at, and not an official board plan), we're looking to appoint a Content Team (obviously the situation with article/blog content is the main thing affected by Cort's departure), an Advocacy Team and a Fundraising Team (two parts to that, fundraising for PR and for other orgs).

We're looking for a lot of people there, to share the work, and perhaps it's better to think of those teams not so much as 'volunteers' but as groups of people working in a similar way to the way members already work on forum threads. By that I mean that forum members already do a lot of work, within forum threads, on advocacy and fundraising-related issues, and we'd like to structure those people into teams/groups and give them more support and resources (like back-stage wikis and communications tools, which we have available) to allow them to co-ordinate better on that work and bring the best of it together 'officially' under the PR banner. Like setting up 'working groups', if you like.

So if anybody is interested in any of that – especially if anybody's interested in co-organising or heading up one of those teams – please get in touch with me; we'll start recruiting for those teams more actively in a little while but it wouldn't hurt to register your interest now. :)

taniaaust1 January 3, 2013 at 1:09 am
Mark

OK, I've reviewed the article and it states Cort's rate of pay at the time of writing about a year ago as $500/month, which is correct to my recollection. It also states an approximation of overall monthly costs at the time of £1200/month, which includes Cort's pay and is a little out of date.

It seems that the original article was replaced by Cort on Dec 15 2011, apparently to correct a broken link, and although the content of the article was replaced at that time, the article does exist in several other places, as you've found. If I recall correctly, that article looks like one that was also sent out as an email around about the same time.

Ok.. You've really confused me. On the link the other provide in which Cort comments dated Sept the 3rd 2012, he says his salary was $600 per month. So I dont understand your comment about an article replaced by Cort on Dec 15 2011 (unless you did a typo error for the year but it still says $600 per month)..

Corts 3rd Sept 2012 comment quoted below.

I appreciate your support of Phoenix Rising and its projects, Justin. If we do win the Contest my vote is for most of it go to our Projects. Not only are those best for the Community but I have always thought that completing these projects is the key to building Phoenix Rising as an organization that can support itself (and myself :))

That's why my salary is $600 a month. I am exploring other options but that cannot continue given my eroding financial situation..Either I will have to find another job to make up the difference or I'll have to get a bit more from PR. That's something for the Board of Directors to decide. My vote is for most of the winnings, should they happen, to go to the projects and my guess is that they feel the same.

taniaaust1 January 3, 2013 at 1:18 am
Mark

I think there are going to be some significant changes and exciting new developments in the coming months, but most of those have been in our plans for a while. As a very rough guide to what I think we're aiming at (this is just my own summary of areas we're looking at, and not an official board plan), we're looking to appoint a Content Team (obviously the situation with article/blog content is the main thing affected by Cort's departure), an Advocacy Team and a Fundraising Team (two parts to that, fundraising for PR and for other orgs).

We're looking for a lot of people there, to share the work, and perhaps it's better to think of those teams not so much as 'volunteers' but as groups of people working in a similar way to the way members already work on forum threads. By that I mean that forum members already do a lot of work, within forum threads, on advocacy and fundraising-related issues, and we'd like to structure those people into teams/groups and give them more support and resources (like back-stage wikis and communications tools, which we have available) to allow them to co-ordinate better on that work and bring the best of it together 'officially' under the PR banner. Like setting up 'working groups', if you like.

So if anybody is interested in any of that – especially if anybody's interested in co-organising or heading up one of those teams – please get in touch with me; we'll start recruiting for those teams more actively in a little while but it wouldn't hurt to register your interest now. :)

That sounds great and certainly the ME/CFS field does need teams working on those things. I have an interest in advocacy (and of late have been trying to research a little on how other groups advocate and trying to research where we are failing and how other groups succeded) and also an interested in fundraising as I think fundraising is ESSENTIAL to us and the ME/CFS needs… I do have some BIG ideas (one is huge) in the fund raising area (I mentioned it to cort a month back but he said to contact others on the board about it but I havent as yet) which could be be followed up on by a phoneix rising group with the backing of the non profit PR site (my ideas are big and would need to go throu an org of some kind to put them into place). So Im certainly interested on being on a fundraising team and sharing the ideas I have to see if they could be put in place in some way.

Mark January 3, 2013 at 1:42 am
taniaaust1

Ok.. You've really confused me. On the link the other provide in which Cort comments dated Sept the 3rd 2012, he says his salary was $600 per month. So I dont understand your comment about an article replaced by Cort on Dec 15 2011 (unless you did a typo error for the year but it still says $600 per month)..

Corts 3rd Sept 2012 comment quoted below.

Sorry for the confusion, this is probably why it was better not to go there at all, we could go on and on into the detail. Cort's salary increased from $500 to $600 per month in between those two dates, I think it was early in 2012 when it increased but I would have to look up exactly when. The original Dec 15 2011 article mentioned the $500, the Sep 3 2012 comment mentioned the $600. Hope that clears that up well enough for now.

Great to hear of your interest in the fundraising and advocacy teams. The first job in both cases is simply to identify people who are interested in taking part in such teams, approaching them and coming up with a list of names (and then after that, explore possibilities for a person to 'organise' the team and liaise between the team and the board), so feel free to be on the look-out for others who may be interested…:)

Cort January 3, 2013 at 1:11 pm
beaverfury

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.

thanks Beaverfury I really appreciate your nice words and your hoped for blessing (:)) as well…:)

Sushi January 3, 2013 at 3:37 pm

Suggestion from the bleachers!

These questions are all pertinent and interesting but why not wait for the detailed statement promised by the Board in January?

Reason?

It has been noted many times that there are only a handful of volunteers keeping this forum going. These are the same people who have promised to an informative statement in a few weeks. If you besiege them with questions now, that takes away from the time they could be using in preparing a statement…that would answer most of the questions being asked!

So, we are actually delaying the answers.

I am going to post this on a couple of relevant threads.

Sushi​

K2 for Hope January 3, 2013 at 3:53 pm

Sometimes change is difficult to accept. But to spend enormous amounts of energy trying to reverse the order of things may not be productive for anyone.

I have found that some things that have happened to me in my life that seem to be "bad" at the time, have, in fact, turned out for the better. So, to condemn something that has already happened without knowing what the future brings may not be the best use of energy for people like me with this illness.

I applaud Cort for taking the initiative to go forward in his life at a time when he felt it was right for him to do so.

I also will continue to support the Phoenix Rising website in the best way I can.

I hope that Cort's new website as well as the change at Phoenix Rising will show that that the ME/CFS community is continually growing, evolving and ME/CFS patients, caregivers and others will benefit from both sources and it will be another step in the right direction for the goals we all seek to attain.

Mark January 3, 2013 at 7:37 pm
Sushi
These questions are all pertinent and interesting but why not wait for the detailed statement promised by the Board in January?
Reason?
It has been noted many times that there are only a handful of volunteers keeping this forum going. These are the same people who have promised to an informative statement in a few weeks. If you besiege them with questions now, that takes away from the time they could be using in preparing a statement…that would answer most of the questions being asked!
So, we are actually delaying the answers.

Thanks you very much indeed Sushi. That is absolutely correct.

Mark January 3, 2013 at 7:49 pm
K2 for Hope

I have found that some things that have happened to me in my life that seem to be "bad" at the time, have, in fact, turned out for the better. So, to condemn something that has already happened without knowing what the future brings may not be the best use of energy for people like me with this illness.

I applaud Cort for taking the initiative to go forward in his life at a time when he felt it was right for him to do so.

I also will continue to support the Phoenix Rising website in the best way I can.

I hope that Cort's new website as well as the change at Phoenix Rising will show that that the ME/CFS community is continually growing, evolving and ME/CFS patients, caregivers and others will benefit from both sources and it will be another step in the right direction for the goals we all seek to attain.

Absolutely.

The more I have reflected on things in recent days, the more I find myself thinking about the future as well as the past, and those thoughts about the future are sooo positive. Cort has already noted some of the opportunities this creates for us all, and in the last day or so looking around on Cort's blog I've noticed loads of positives for him as well.

It's still sad for all of us, but Cort, I would guess will now be blogging much more often than he has been able to for ages. He's still welcome to blog for us and the way things are working out, with his new revenue streams, and us as a backup whenever he needs it, I would hope his previous income level will be at least secured and, in the longer term, likely increased. While his business model is different from our non-profit business model, we can access different revenue streams. I would imagine (guess) he's perhaps enjoying regaining a bit of a taste of freedom from the constraints of working in a team. He can look to build the future, so can we, and really what we have in common in our vision and values remains far more significant than where we differ over details, so we'll remain friends I expect. So I'm starting to see so many positives in all this, despite all the pain, and I know Cort's such a positive guy he will be doing that too. Phoenixes rise from ashes, is that not how it works? So I hope the community can stay positive too, and if so, I reckon we've all got a lot to look forward to in 2013.

Johannes Starke January 4, 2013 at 3:53 pm

While I haven't participated in the forum rising forums, I've followed Phoenix Rising since its inception, have been helped tremendously by the information provided here, and feel motivated to share my thoughts on this transition.

Firstly, I am sad that Cort is departing from Phoenix Rising. The positive spirit and lucid style of his writing attracted me to Phoenix Rising, in the first place, and I’ll definitely miss it.
I'm happy, however, that the tone in which Mark speaks about Cort is still very positive and also that Mark expects to stay friends with Cort. This indicates to me that the separation of Cort and PR was, as stated, due to differences about the vision for Phoenix Rising, not because of a lack of character of any of the involved parties.

I'm also happy that Cort gets an opportunity to start something fresh and new. I have gotten to know him as a super creative, resourceful, hard-working, generous, ethical guy, so that I am very optimistic that his future contributions to the ME/CFS community will be terrific.

One of the things I've learned to appreciate is that creating online resources and communities is easy technology-wise and can easily be adapted as they evolve. Who knows, I believe it's well possible that, as it evolves, Cort's new venture for helping people with ME/CFS may begin to cross-pollinate nicely with Phoenix Rising, so that one day Phoenix Rising and his latest sprout/venture will be reunited in the same thriving home/garden (mixing metaphors here) which will then provide abundant nourishment and hope for those affected by ME/CFS.
Let it grow, and let's celebrate what's coming!

Lastly, I also want to acknowledge Mark for his thoughtful replies to the comments in this post. Thinking about how much time and energy it must have taken to write all the comments in response to questions in this blog post, I can only imagine how much it takes to moderate the forums and do all the other behind-the-scenes work for Phoenix Rising. Thanks to you, Mark, and the entire Phoenix Rising team for all the hard work you put in!

Mark January 4, 2013 at 4:47 pm

Thanks very much for your vote of support for us all Johannes, and for your reassuring words: it's good to know that most of our members and readers are able to put this in perspective and have a sensible understanding of what's happened. It's also good to meet somebody who's been following us all the way through and only just felt moved to post on the forums. I hope your first post won't be your last – welcome to the forums! :)

We know that there are at least 3 or 4 times as many regular readers of the forums as there are members who post, so to all of you out there I'll wave a quick hello and say that we know you're out there and we understand that there are many reasons why actually posting isn't appropriate or possible for everyone. I like to consider our non-posting friends as 'part of the family' too.

Liz January 16, 2013 at 10:29 am

I realize that I'm late to be posting a comment here, but I just want to thank Cort for the work he has accomplished here. He gave a voice to those of us who are too sick to speak up, and he explained medical research in a way that allowed us to both understand and hope.
Thank you, Cort! Please leave us a forwarding address!

OverTheHills March 27, 2013 at 3:11 pm
Mark

View the Post on the Blog

View the Post on the Blog

How is the board going with its statement of intent, plans for consultation etc? I realise this is a busy time with preparation for the FDA meeting but i would not like to see this drop off the agenda
OTH
By the way liked the very excellent letter asking for focus on ME not CFS ('splitting' rather than 'lumping').

Mark March 27, 2013 at 5:38 pm

Thanks for your question OTH, I'm acutely aware of this and trying to progress it. We've been rather stalled on all that recently I'm afraid but it is still high on the agenda. I'm very much hoping we will have something within the next month but I'm hesitant to make any promises. We've progressed various things towards that end but there are several parts to what we want to set out and some of them are proving to be more difficult to sort out than others. This is something we want to do properly and there are a number of different aspects to it.

The biggest thing that interrupted us really was the CFSAC application. We felt it was important to apply for that seat but it took a lot of work to put it together. Before we got notice about that, we were getting there on the statement, consultation, transparency etc. Since then, there have been a series of things like the FDA work, contests and newsletters, and for me, the continuing job of organising and publishing articles leaves me with very little spare time. We actually had to migrate to a totally new server a month or so ago as well – you may have noticed a day or so of slight glitches but it was amazingly seamless for a major operation that took a lot of work to achieve. The other board members have been very busy with personal and health issues for the last few weeks as well. But I'm hoping that we have a window of opportunity in the next few weeks to get back to work on all that stuff.

From my point of view, the thing that could make the biggest difference to me would be some help with managing the articles. More writers would be great, eventually, but in the short term I could use people to help with commissioning them, planning them, liaising with the writers, editing articles in wordpress, sorting out images, reviewing articles, and publishing them. If I could find a way to hand over all that work to somebody else (or a small team) that would free up my time to do more work on these other issues. That said, it's always a lot of work to train somebody up to do it and show them around, and communicate with them, until they can do the job without a lot of supervision, so it will need an investment of time on my part in the short term, but I have a free week next week so I'm thinking of spending that week on trying to expand the content team…anybody interested in that, please contact me….but note that good language skills and word processing are important for that.

OverTheHills March 27, 2013 at 6:15 pm

Hi Mark
Thanks for the info. See my PM about the content team
OTH

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