• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

Cort

Phoenix Rising Founder
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.
It's a great Forum - I was just checking it out - and I think Phoenix Rising is different. I came up with the name Phoenix Rising because of a vision of a phoenix - us - rising from the ashes. My focus has always been on the possibilities that research efforts, treatments of all kinds, and advocacy present. That's what I get jazzed by.
 

Cort

Phoenix Rising Founder
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.
I agree with everything you said! I'm going to check out some Forums and see if they've done anything to bring Facebook/Twitter users etc. back.
 

Cort

Phoenix Rising Founder
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
:) :) :)
 

hapl808

Senior Member
Messages
2,005
My vague impression when I've looked at S4ME is it seems to discourage anecdotal reports and anything that doesn't have a strong scientific grounding. They seem to be looking for peer reviewed papers published in respected journals. Which is great and my preference in a perfect world, but I guess I don't need to read a forum for that? If someone cures ME/CFS and it's published in NEJM, I'll hear about it.

What I've liked here is generally people will report what has or hasn't worked for them, but there's very little pushing things on other people or criticisms that, "Your experience is invalid because we don't know the mechanism."

I perused for years before joining - mostly just denying that I had this and looking for other (treatable) illnesses. Still, I found it helpful.

There seems to be an awareness of how much we research but how little we know, and that we're all dealing with the same challenges, but our reactions to things may be different.
 

Cort

Phoenix Rising Founder
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.
These are real and unique assets!
 

manasi12

Senior Member
Messages
172
@Cort.. Welcome back to the forum. I am a member here since 7 years and was always amazed at the depth of knowledge and unique perspectives of members. I always wanted to thank you for both PR as well as Health rising. I'm really grateful to you for founding this forum. It has helped immensely to learn about the treatment options and making feel less isolated. This forum is so unique than others. Sometimes I dig posts from 2010 and learn new things. It has been really like a community for me giving vibe of my people in toughest phases of life.
Thanks a ton and best wishes..
 

leokitten

Senior Member
Messages
1,541
Location
U.S.
Thank you @Cort for taking the reins I can’t thank this forum enough for all the valuable insight I’ve learned over the years. I’ve been a member here 10 years after I got ME in 2013. It needs to keep going to give us all hope. I’ve been trapped in bed for many months now and it’s brought me some happiness to see that PR has always been and will be in good hands. Thank you @Janet Dafoe and other board members for years of work maintaining this resource, I know you all have your plates full thank you again.
 

Judee

Psalm 46:1-3
Messages
4,398
Location
Great Lakes
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 they're also too visually busy with all the sidebars and whatnot. It confuses my mind.

I also hate the multi-layerered commenting and how I have to keep opening more comment layers to see them all.

With PR it's just straight down the page to see what everyone is saying.
 

Abha

Abha
Messages
267
Location
UK
Welcome back Cort.
I was a member of Health Rising too but then I couldnt access it because of sign in issues that I wasn't able to resolve so I just had to be content with the Information found on PR.
 

YippeeKi YOW !!

Senior Member
Messages
16,034
Location
Second star to the right ...
It takes a lot of work to make a site a home 🏡 ....

I have no idea who was on the board, beyond @Janet Dafoe and @Hip and the much missed @Diwi9 , since it was rarely, if ever, mentioned. But for all their effort, guidance, and nurturing, I’d like to thank those members for creating and maintaining this superior, much-loved site, along with the hope that they’ll continue, along with the original OG, @Cort , to help oversee and guide PR thru this next incarnation, and will remain visible and involved in this research-and-community-rich little jewel they helped create and grow.

Well, maybe after a recuperative little vacay :globe::globe::car: :car: :rocket: :balloons:.

Thank you for everything you’ve done, and all that you’ve accomplished in our behalf. And for the difference you’ve made in lives whose horizons are a little wider and more hopeful because of those efforts and that commitment.

(With apologies to anyone I’ve left out, cause, you know, I didn’t know :wide-eyed::jaw-drop::please:…..)
 
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dannybex

Senior Member
Messages
3,555
Location
Seattle
My vague impression when I've looked at S4ME is it seems to discourage anecdotal reports and anything that doesn't have a strong scientific grounding.
And their definition of scientific, is strictly pharmaceutical-based treatments. They dismiss any science that shows a benefit from things like methylcobalamin or any vitamin/mineral that is proven to help say, mitochondrial function -- just as one example.

Don't get me wrong, there are very nice, well-intentioned folks over there, but IMO they seem to automatically negate things that don't fit the drug model. I often thought they should change the name of the site to D4ME.

That just slipped out.

Welcome back Cort!