Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

[YippeeKi YOW !!]

I have noticed less activity on PR in the past 2+ years, and I hope that your return to the helm will reinvigorate the platform.

Totally agree .... I've noticed the same, and commented on it.

I also want to opine that Health Rising and Phoenix Rising have two very distinct cultures, and there's a reason why I joined PR, and not HR, almost a decade ago.

And again, couldn;t agree more. It's almost chalk and cheese, and like you., I chose PR .... am deeply hoping that those differences will be recognized, honored, and allowed to continue to evolve, each in their own special way ....

I do hope that differences between the two platforms will be respected, supported, and maintained throughout the evolution of PR.

Hear, hear, and hallelujah !!!!

That said, I'd like to join the chorus of 'WELCOME'S !!!!' to Cort, and gratitude for his coming to the rescue of a site that was hovering close to disaster !!! Both generous and courageous !!!

 

[Murph]

I certainly hope PR and healthrising maintain their distinct identities. Big fan of @Cort but each site plays its own role.

if anybody has mentioned this site is a bit les busy than it was at its peak, that's probably because of s4me, which opened a few years back and siphoned off some users. s4me is a useful site too with some users I respect greatly. But to my eye the culture there is less open and less solutions-focused, quite UK-centric, and more centred on devotion to a particular retired professor whose contributions have, in my view, a negative effect on the way people post on the forum. I read both but enjoy contributing here much more.

 

[YippeeKi YOW !!]

I certainly hope PR and healthrising maintain their distinct identities. Big fan of @Cort but each site plays its own role.

I agree ... and like you, am hoping that we won't be merged in one giant, one-size-fits-all, cause that never works out well, and would be the death knell for both sites ....

s4me is a useful site too with some users I respect greatly. But to my eye the culture there is less open and less solutions-focused, quite UK-centric,

I still drop into sci4ME from time to time, but am finding it less and less helpful.

There's no place like home !!!!

 

[CSMLSM]

Welcome back @Cort I look forward to hearing more from you and seeing what you have planned for the future of the ME/CFS community.

 

[Mary]

@Cort - I think we all owe you a debt of gratitude for, first, founding Phoenix Rising to begin with, and now your willingness to step back in when asked to and when badly needed. I can't imagine dealing with ME/CFS the last many years without PR as an invaluable source of information and support. I really can't. In the first years I was sick (since 1998) there was almost nothing on-line about ME/CFS, one just floundered around looking for answers and trying to make sense of the incomprehensible.

And we're further indebted to you for all the amazing in-depth and yet accessible to non-scientist articles you've written for Health Rising - thank you so much!

 

[godlovesatrier]

Yep the problem with facebook, twitter and discord is they are extremely impermanent and the features they offer for search, index and discussion are generally atrocious in my opinion. Plus with a forum you can do a hell of a lot, with plugins and even bespoke code if you want to get really fancy.

Hopefully with the pandemic and long covid patients we might actually see more people arriving, old things keep coming back into fashion maybe forum boards will as well - one can hope. The inpermenance of things has bothered me for years.

 

[Viala]

The thing with websites like facebook and reddit is that threads are organized linearly. The main purpose there is to socialize and find quick answers, not to gather data. Every time someone has a question or writes about a new discovery, after about a week it gets buried under new threads, and because no one writes in old threads, there is no point in commenting there. The only way to revive some topic is to start a new thread. All the information shared in similar threads is spread across the whole timeline and not easily accessible. This whole arrangement creates an environment where everything is rediscovered anew on a regular basis, which is furtherly fueled by new members who will start the same topics over and over again. These websites are a great place to share and find information, but it is more about a community, now and today.

That's why a forum like Phoenix Rising is a great place for sharing information because it allows to gather and organize data. New information is constantly added to the old one and not only singly served, and this is the only way that can guarantee any progress. It also offers everything that the other websites offer. It is research and community.

This forum is truly amazing and I am grateful that a place like this exists. I want to thank everyone who keeps this place running and who contributes by writing, sharing and supporting other ME/CFS sufferers. It is incredible how far we got considering how difficult this disease is. Thank you @Cort for creating this website.

 

[godlovesatrier]

and another thing, I see people mentioning the same things over and over again, sometimes things we've not talked about for 10 or 20 years on PR forum and all the information is RIGHT HERE. Doesn't matter how often I link PR tho nobody seems to pay any attention. Our recovery and remission thread for example is very useful info and yet not convinced anyone reads and pays it any attention.

 

[Rufous McKinney]

That's why a forum like Phoenix Rising is a great place for sharing information because it allows to gather and organize data.

This part seems like a very good thing;I do not spend much time in other sites, as they confuse me.

Every time someone has a question or writes about a new discovery, after about a week it gets buried under new threads, and because no one writes in old threads, there is no point in commenting there.

I feel that some of that problem DOES occur here. 1) threads disappear rapidly...so an entirely new thread that's really interesting might drop off the radar in an hour or two; that bothers me; 2) I will try to resuscetate older threads, only to see everybody else goes and makes a brand new one...and I think that is because of the problem in item 1 (and there may be no real solution to finite space on a screen)...3) thread titles are often poorly worded...or too specific in my opinion (personally, I think one thread about Dr. Prusty should work, but instead how many are there and every time someting new happens, its another thread??)

Regarding Health Rising, and @Cort valuable contributions to our cause...I am just sincerely grateful.

Thought I would share that I'm so unobservant these days. I visit Health Rising to read the great articles on research. It never even dawned on me, that there are forums there, and people discussing topics. I've never clicked on any of those tabs.....Wow. (until yesterday)

 

[Emmarose47]

I suddenly thought how about a Facebook page that links to PR? Or is that a crap idea

 

[Sushi]

I suddenly thought how about a Facebook page that links to PR? Or is that a crap idea

Phoenix Rising does have a Facebook page.

 

[Emmarose47]

Ah OK..

 

[cph13]

WOW! Welcome back Cort. I've never abandoned ship @PR, just not active. THAT WILL CHANGE, I'm sure.
PR has always been my 1st place to check in something that I hear about n need confirmation.
I've learned so much from you Cort n, of course, our beloved Rich V K (rip) and so many others.
Cort, God's Choicest Blessings ..
Happy healing to all, XO C

 

[Hip]

I am sorry to hear the board all resigned. That is rather shocking.

This all happened in a planned and most amicable way! The story is this:

When @Diwi9 resigned from the Phoenix Rising nonprofit board last year, after 5 years of service at PR, there was a need to find new leadership for PR.

@Diwi9 did a fantastic job over these 5 years: streamlining operations, saving PR money by taking on herself the unenviable job of compiling the PR nonprofit yearly accounting and tax filings, being a public spokesperson for PR, and being a leader at PR who other staff members could turn to for advice and direction.

When @Diwi9 stepped down, none of the other board members wanted to step up to this position (myself included, I am happy doing tech support for PR, but did not want to take a leadership role).

So the board needed to find a new leader, and @Janet Dafoe, the President of PR, reached out to Cort, to see if he might be interested. We were all very pleased when @Cort said yes! We knew that the website could not be in better hands than @Cort's, whose work for the ME/CFS community has been enormous and tireless across two decades, having founded the Phoenix Rising website back in 2004.

@Cort pointed out that to simplify administration, it would be better if the nonprofit organisation behind PR (that he had originally set up many years ago) were closed down, because running a nonprofit requires administrative and accounting filings that take time and fees, and for no real advantage. So the board unanimously voted on closing down the nonprofit (thereby resigning the board!) and handing over control and ownership of the PR website to @Cort.

So a warm welcome to @Cort, and a toast to the beginning of a new chapter for Phoenix Rising!

 

[wastwater]

Welcome back cort

 

[brenda]

As one of the members going way back, welcome back Cort. I am pleased to see you.

 

[Cort]

@Cort - I think we all owe you a debt of gratitude for, first, founding Phoenix Rising to begin with, and now your willingness to step back in when asked to and when badly needed. I can't imagine dealing with ME/CFS the last many years without PR as an invaluable source of information and support. I really can't. In the first years I was sick (since 1998) there was almost nothing on-line about ME/CFS, one just floundered around looking for answers and trying to make sense of the incomprehensible.

And we're further indebted to you for all the amazing in-depth and yet accessible to non-scientist articles you've written for Health Rising - thank you so much!

Thanks!

 

[Cort]

As one of the members going way back, welcome back Cort. I am pleased to see you.

Thanks Brenda, good to be back

 

[Emmarose47]

Be good to know your m. E / cfs story briefly @Cort if u wanted to share it?
If not no worries!!

 

[Cort]

I am looking forward to those future posts, Cort.

I have noticed less activity on PR in the past 2+ years, and I hope that your return to the helm will reinvigorate the platform.

I also want to opine that Health Rising and Phoenix Rising have two very distinct cultures, and there's a reason why I joined PR, and not HR, almost a decade ago.

I do hope that differences between the two platforms will be respected, supported, and maintained throughout the evolution of PR.

I was surprised by this as I started both with the same intention but I don't think you have to worry. Both grew out of a personal quest to dig deep into what's going on with ME/CFS - particularly the research - and communicate about that. Along with that came an intention to be open-minded regarding treatment possibilities, to support people in sharing, and be a welcoming place for everyone.

HR's forums were always small and one person or more could set a tone and at one point a prolific poster did. She was very helpful but aggressive and ended up leaving the Forums after I asked her to ameliorate her tone. I wonder if that's what happened or maybe there's just a difference between a Forum focused website and a blog-focused one where there's less moderation.

In any case, my commitment to PR is exactly the same as when I started it - to be a welcoming place that respects everyone's contribution. I don't see why anything here should change and please let me know if it does.

I'm pretty sure we're on the same page but if you want to lay out what is distinct in PR's culture that you want to make sure is retained that would be helpful, too.