Good-bye To Phoenix Rising
Eight years after creating Phoenix Rising and two and a half years after turning it into a non-profit I am leaving Phoenix Rising and creating a new website. I don’t think either the Board of Phoenix Rising nor I want to get into the nitty-gritty of what happened.
The most important factor for me was the Board’s desire to have complete control over the organizations decisions. I was offered the opportunity to be a paid blogger but that was not enough for me. Other issues also played a role. I,of course, need to take responsibility for my part in creating a situation in which something like this could occur.
The Board and I are aligned on our basic goals for Phoenix Rising and I support the work they’re engaged in. Despite its large presence on the web Phoenix Rising has always been a very small organization. Each board member (all of whom have ME/CFS) has contributed a great deal of time and effort to PR and I honor their commitment and I wish them and Phoenix Rising well in their future endeavors…
Hello To….err…???
The Name Problem – Oddly enough choosing a new name for the website was maybe the most difficult and perplexing part of this whole endeavor. After a great deal of head-scratching I punted….The new website is at an easy to remember temporary URL – cortjohnson.org. The name on the site now is Health Rising and I’d love to have more suggestions…Everything on this site except for the blogs may be temporary; the location, the name, the look and feel…it may all very well change…drastically.
Support – The site is not a non-profit but I could use your support in several ways. Donations, of course, are very helpful. Testimonials will be very helpful to build up the site and you can find a testimonial page here..Anybody skilled in WordPress, PHP or CSS will be greeted with open arms.:). We have Amazon.com stores on the site if you’d like to support the site that way. Suggestions are welcome.
Thanks – Thanks to everyone who supported me over the last couple of months and a special thanks to Simmaron Foundation, the website’s first sponsor, which provided critical help as events unfolded.
The Blogs! – My production slowed down as the Board and I struggled over the next steps to take but will speed up quickly in the new site. I encourage you to sign up for the blog and the monthly newsletter. (Be aware that the program does not let you know that you signed up…It will send you a email validation)
Freedom from Fibro Summit Encore Weekend – Watch Any Presentation
Watch any of the 40-plus presentations from Dr. Murphree’s Freedom from Fibro Summit for free this encore weekend. If exploring alternative health options is something for you – or if you just want to explore what’s out there – Dr. Murphree’s Summits provide a great overview of the possibilities this large field of medicine presents.
The Summit provides simple techniques to reduce pain and anxiety, provides updates on the latest research, diet options (one of which has helped me greatly), ways to boost energy, the latest on fibromyalgia research (my presentation), etc.
Click here to check out the encore weekend and here to see a prior blog on it.
The present site is small. Besides the blogs it will focus on providing information more efficiently to the ME/CFS/FM communities. More on that later…
Blogs
- The Rituximab Watch
- ME/CFS Buzz – Ampligen, Rituximab, Newton’s Nuggets, A Big Win and more…
- Stimulating Results in Vyvanse Treatment Trial
- Chronic Lyme er…Chronic Fatigue Syndrome? Pivotal Study Suggests Similarities
Support Health Rising
Hi Cort,
As one of the early members of Phoenix Rising, I remember the initial structure and rise to what would eventually become an enormous CFS/FM website and highly regarded around the world for the latest news and research.
It got too big and too energy draining for my intermittent cognitive dis-function, so I left and became more focused on non-health activities.
I feel ‘Health Rising’ as a name is a little too vague – but that’s just my opinion.
Best Wishes and Good Luck with this new site
Vicki (alias Victoria)
I remmember your posts in the early days of the Phoenix Rising Forums well. Sometimes there is a cost to success….Thanks for the support.
Hello Cort,
First want to say I wish you well with this new endeavor. I am not privy to what has gone on with the PR board, so my post here is one of a concerned patient who thinks ALL groups should work together w/ as few politics as possible toward the common goal of eradicating ME/CFS( or at least finding a treatment to make life better for those who are inflicted) And that means those, who’s politics I do not agree with either.
I’m prone to opinion on policy as much as the next person ( yes including yours at times ! and certainly Peterson/Simmaron. But I like to think I am a civil and reasonable person and so here I am offering support to you — to anyone — that wants to find a better way.
It is with great hope that you are committed to the same. We( the me/cfs community) have enough struggles, we don’t need to fight between ourselves.
Secondly, unlike on other boards, I have signed on with my real first name. I miss the pre internet days, where patients connected up on a more personal level via phone , through friends of friends, newsletters that had contact information, and fellow study participants. It was certainly not perfect, and not without the politics as well, but I think there was greater civil intercourse, as things were more personal. Less anon. bashing, in short, a gentler time. It is my single step to promote the return to a gentler way of communicating within cfs/me communities. We are all in this together. or should be.
I do enjoy the post internet days of fast and wide dissemination of information. And the great way it allows patients , providers, caregivers, and groups to connect up and bind together across many geographical barriers ( not the least of which , is ones own bed. )
I wish you well !
~ Cheryl
Good points Cheryl
I agree that working together is best and it’s crazy that things like this happen. They fragment things, they make them less efficient…(I lost a big platform at PR), it bollixes up the flow – but unfortunately things get in the way and they do happen…I think we’re all committed to the same thing in the end though and hopefully we’ll all work together to achieve that.
Really, really sorry to see you leave PR – it won’t be the same without your excellent blogs making sense of complex issues, informed by your impressive access to CFS researchers. You presence and personality will be missed too.
But here’s to the future and the success of your new venture. I’ve subscribed to your blog and look forward to the next one soon…
Thanks, Simon
Thanks for subscribing to the blog. Look forward to interviews with Dr. Kogelnik and Annette Whittemore in the near future.
I’m brand new to a B12 deficiency and found this website looking for updated information from Phoenix Rising (on B12). Could you possibly point me to any updated protocols / websites? I’m wondering things like latest recommended protocol and brands of supplements.
Thanks very much!
This is ridiculous. This was your baby and the name was yours long ago. You created this whole thing though with help and did fantastic blogs. I can only imagine that when you turned it into a nonprofit you signed away your majority vote somehow. I’m disgusted. Whoever is on this board has acted against the community’s best interests.
If I were you I wouldn’t bother starting a new site and another decade building it. I’d try to get on as a paid blogger at a national website. Put tivether all your accomplishments, your mentions in national magazines and science journals, the readership you garnered for the site and your blog postings, and try to get a paid platform at Discover, The Daily Beast or any site that pays well and pays with bonuses based on readership. Buzzfeed might work too. I am not saying you can earn a lot but you might. A popular blog can earn 20-50k or more a year if it brings a large readership to the website. Think big. And to the board: whatever you did was wrong. How you could treat the founder and creator like this I can’t imagine.
Thanks for your advice Jenbooks and I appreciate your support! Hmmm…National Blogger…I never thought of that….Thanks for the tip!
I agree with JENBOOKS! the ONLY reason i ever checked this website, was to hear about something CORT did or said! xo TMH
Mr Hennessy! Thank you!
I agree with the above comment. Cort’s level-headed leadership, his desire not to take sides in a faction-prone situation — that was the heart and soul of Phoenix Rising. There are many, many CFS sites out there — and on PR itself — for me it was a case of Too Much Information.
I’d like to see Cort take our story to Huffington Post. There’s enough inter-group conversations going on. Right now, Jacob Teitlebaum is the voice of CFIDS on HuffPo and elsewhere — and he’s pushing a product line. Cort is a great representative for our community to the outside world.
Thanks Christina and thanks for your help with Phoenix Rising as we created the non-profit. I am going to try the ‘Huff’ 🙂
Nothing long-winded here, Cort, I just wanted to send my congratulations. My confidence in you has been unwavering from the start. Best to you!
Thanks Polly and thanks for your great assistance with Phoenix Rising. You were critical to making it as successful as it has been.
You won’t place me. Good luck and thanks for all the good work.
Cort, very sorry to hear this news–PR has been my ME/CFS home since I realized that that was what was “bugging” me, and I recall vividly the months after the Science paper appeared with news about XMRV when for a while I had the feeling that this was my real psychic “home.” But it has grown almost too big, though I still recognize names from back then, and there are still great people posting who find and offer helpful information and discussion. Including of course yourself.
I will subscribe to your new blog, and see how things work out; and thanks for all your advocacy in the past, and I hope the future too. Best wishes, Chris
Chris..I’m glad that you like so many others found a home on PR. We all had to grapple with the Forums ‘success’ and the changes that that brought. I will continue to be on PR on the Forums…
Thanks for signing up for the blog and your support over the years. 🙂
Who are the Board members? What is the point of starting a new blog? To those who have been around for a while, the “we don’t want to get into it” is usually suspicious.
Yes, well its also standard procedure. We obviously had disagreements but we also want to part on good terms so that’s why it’s happening this way. No need to get into the blame/fault game. It just didn’t work out.
Cort,
I know that whatever you do will be a huge and popular success because of you, and that you will continue to provide content that will propel forward the efforts of all who aim to eradicate this illness. Thank you for your service, and I look forward to “hearing” your voice. You already ARE a national level blogger – you may as well be paid for doing it. I think the previous advice for you to seek a paid position as such is solid.
With gratitude,
Claudia
Thanks Claudia. I really appreciate it…I love the idea of having an national voice! That spreads beyond the immediate community :).
Hello, Cort,
This news is shocking but not entirely surprising, considering how organization politics go. I’m glad to know your silences aren’t from needing serious downtime or anything like that.
Will register right after posting this comment.
I posted this over on PR, not sure how much will be edited out, so I will say here as well:
It’s my belief that the Chase money came about because so many were behind Cort’s ideas and agenda. This is just messed up. Many of those projects now will not go the direction originally supported. What happened to solidarity? His name and the Phoenix Rising name needed to remain synonymous for the advocacy work being done. This board just shot itself in the foot.
Cort definitely needs to go national. His name is already out there enough.
Thanks Natalie, I really appreciate your support. My health is actually probably better than it was a year ago – despite all the turmoil.
I’m glad Phoenix Rising has the money. I don’t know if you noticed but Phoenix Rising (ie me) abruptly stopped participating in the Chase contest about a 1/3rd of the way into the contest. I made the decision to get over my particular issues and support Phoenix Rising at the end and PR, thankfully, got its 10K and I’m glad they did. I knew at the time it was possible that I wouldn’t be back. Honestly I should have got over my issues sooner as the ME/CFS Community needs the money whether I’m there to determine where it goes or not.
As to my ideas; yes they were the ideas we rallied support around in the contest and hopefully they’ll go on with me or without me :).
Yes, it is rather shocking. I’m still weaning myself from my life with PR but one non-profit leader just emailed me and noted that this type of thing happens alot more than we might think.
I think the best thing we can all do at this point is get on with it! I think I’m over the first shock from this news earlier today, and have had time to think through many aspects of it.
Solidarity still exists if we pull together and keep working on advocacy issues. I admire your positive attitude, and the more I read here and on PR, the more I see the possibilities of this turning into something very good for all concerned.
Yes… I did notice your input slowing down along the way there, wondered. 🙂
Divide and conquer? Maybe this is all win-win in the end.
Cort,
I was not able to follow all of PR, but did visit the site and the Forums sometimes. I knew I could always find reliable info., and respected the incredible amount of work you’d done. In fact, it always amazed me. As someone who has had ME/CFS/Fibro since 1976 and severely so since 1987, the “brain fog” was often too great for me to deal with the amounts of info. provided.
When I was still able to work, I was a fund developer and program coordinator for non profit organizations–some national and some grassroot. I was on boards and worked with boards. It is terribly difficult. I was fired from one project I had developed and raised a great deal of money for…it took me years to get over the hurt. So although I don’t know what’s happened with PR, I do understand how political all this gets and the feeling that it shouldn’t be this way. But we are all humans, with or without ME/CFS…
I don’t know what course you should take, but if you can be a paid national blogger, it might be good for both you and the ME/CFS community. We definitely need to be more recognized. Do what you feel is best for you. Thanks for all you’ve done for those of us with this condition.
Theresa
Thanks for providing your experience, Theresa…. That must have hurt like hell…You’re right – we’re all just fallible humans and in this case we all have ME/CFS to boot- and this stuff happens to healthy people all the time – so we have to cut each other a break. It’s easy for small groups to get locked into negative dynamics as well.
I don’t know how this is going to turn out; that blogger idea is intriguing and there are other options as well. I appreciate your nice words 🙂
It’s great to see you blogging again, Cort, you’ve been greatly missed. I agree with the above said: I’m glad your down time wasn’t due to worsening of health (really glad to hear that you’re actually a little better than a year ago!); I, too, think PR is making a mistake but I’m glad you are here now; and I, too, think you should go national if possible.
Looking forward to all the coming posts!
Maybe international…..? 🙂 🙂 🙂
Even better…!
Wait, does the potential option of you becoming a paid blogger somewhere mean that your blog posts would be less accessible? (behind pay walls, requiring registration, etc) That would be less good, I think…?
Are you still at the same e-mail address? I’ve e-mailed you – check it out if you can.
Hi Cort,
Sometimes we just have to move on for whatever reason The world is your oyster! You have the right stuff.
You and PR have helped moe more than you will ever know.
The best to the very best,
Marg
Thanks Marg…Love your support! Thanks!
Hi Cort. I don’t have much I can add except that my experiences for decades with many non-profit boards has consistently been fraught with so much in-fighting. And the members of those boards were not dealing with such a controversial topic nor with having an illness themselves, other than me of course. Once I was elected to a board with unquestioned support from all involved, and was so happy about it. I went to the first board meeting and found half the board standing on one side of the room and the other half standing on the other side of the room. It turned out that the 2 factions of the board were suing each other! No side seemed to care anymore about the reason our non-profit existed. I didn’t even know that there were 2 factions!
The real reason I am writing is that although I don’t know you and it is often difficult to be online; I felt I had to thank you for all you have done for me and so many others who are too ill to be online. PR rocked because of its rock star–you!
I look forward to following you in whatever endeavors you pursue, and wish you health and happiness.
THANK YOU!
They were suing each other! My goodness! .and they were healthy…Well, its certainly been a learning experience- that’s for sure…lots of learning…Somebody told me that I had different backgrounds and that was very true and I’m sure that played a role.
PR did provide me a good platform and that I’m thankful for that.
Thanks for your support..I look forward to the future…
Your name will forever be embedded and associated with PR, Cort. I have ‘known’ you from before PR. I joined PR but unfortunately never felt at home.
We had a few run-ins, you and I and I stopped posting, too many rules that I could not agree with. As I wrote before, we Dutch are raised to speak our minds. That doesn’t always align with the rules and regulations of a forum. But even though I’m a wannabe American now, in my heart I always be a Dutch gal.
Looking forward to what will come from your new adventure, unfortunately my WordPress coding is not up to date, would have loved to help you out 😉
I just read a quote, seems fitting to post it here;
‘Follow your Bliss and the Universe will open doors for you where there were only walls’ – Joseph Campbell
Be well and many blessings
Thanks Christine…The Forums grew to have more and more rules…I guess that was inevitable but it really rubbed some ‘free-spirits’ wrong and we lost them unfortunately.
I like the follow your bliss quote…Things weren’t working out at PR and I guess I could have hung there but I guess I did follow my bliss and I’m a little anxious and excited at the same time…Its like stepping out into the deep end and learning how to swim again…you get a little scared but you learn how to swim and then you’re strong and more capable than ever. 🙂
Thanks for your good wishes….
I’m sorry to hear that you were pushed out of PR by politics. I personally HATE politics of any sort — national, local, at the organization where I used to work, within my extended family — and only get involve if/ when I need to to get things done. And I’m always suspcious when orgs push out their founders when the org is doing well and there seems to be no indication that the founder did anything untoward. I realize you are being diplomatic and trying not to “hurt” the cause perhaps by revealing anything or some degree of confidentiality might have been involved in contracts. Ultimately though, I think the PR board make a mistake and will regret their decision.
My suggestion is that in your tab ‘About Us,’ if it helps, put in some stats like how many people read PR a day, how many posts you get, how many members there were, etc. As advertisers or whomever will likely want some solid numbers.
I also suggest you have an area where people can list/ suggest recent CFS papers and/or comment on them. I am not on PR much these days but the section I do check out is the “Latest Research” area.
Thanks for the tip…I’ll do that; if I don’t do it soon please email me and harangue me…I’ll put it on my to do list.
It was ironic that this happened just as we won the Chase contest; very ironic indeed. Your point about the organization running well is an interesting one. All I will say is that I felt that our ‘clients’ the ME/CFS community probably felt PR was running fairly well as well; the Board on the other hand had grave concerns about some things. We obviously had a difference of opinion about the gravity of certain issues.
Thanks for the latest research section idea…I will put that into the pot as well 🙂
hi Cort, I’m sad that it’s worked out this way because I imagine this wouldn’t be your first choice, but I know that whatever you do, you will do well.
all the best,
Janelle
Thanks Janielle,
I appreciate your confidence! 🙂
Hi Cort
As one who lives afar (Australia), I have always appreciated your writing and your enthusiasm for the cause. I have ME and FMS and have always tried to keep up with what’s going on. Last year I started having seizures, due to drug interactions (No more Tramadol), so now i have very little memory of things prior to that time and now I’m even vaguer than I used to be! I retired about 3 years ago as a Psychology/Nursing academic and now have a small private Psychology practice. I can’t even offer my writing skills, because I find reading and researching hard now, but I will at least be keeping up with your future adventures/ventures!
Thanks again and all the best for what comes up on the horizon. Hey, ‘Horizon/s’ could be a good word to use in your new title!
Mike
Thanks Mike for your nice words and sorry to hear about all the troubles..I have a blog planned about the dangers of overtreatment actually…That’s really something – seizures because of drug interactions…ouch!
Yah…Horizons…that fits well with Rising in some ways. Thanks!
I wish you better health in the future.
Cort,
I feel like Ive known you for quite a time. I was a reader of your blogs before one day I finally saw you also had done a forum and it was your blogs and you yourself, which made me decide to become part of the PR forum over the other forums Ive previously frequented.
The other ME/CFS forums just didnt carry the same kind of medical knowledge thou there were plenty of people in them for me and lots of emotional support in them it just wasnt the same as here. Your blogs attracted thinkers and people who were more medically minded into PR which attracted then more of this group. You’d brought together a group where I fitted into for the first time. I can only hope that PR doesnt fall apart now that you are gone as who else puts more time and energy and a push into its success then its parent! If we end up loosing PR over this split.. it would be terrible for the whole ME/CFS community. Years ago I was in a group (it wasnt a ME/CFS group thou) in which a similar thing occurred.. without the founder the popular group very quickly disbanded..something no one would of ever predicted..hence my current fears).
Im very saddened for you that you’ve lost your “baby”. I hope your new ventures are as successful as PR was for you. I like the idea of you going International if possible. It would be great if some ME/CFS org can take you on as a blogger. The way you put info together for example the recent survey on benzo use in us, is quite invaluable to add to our ME/CFS communities knowledge
Thanks Tania very much,
I feel the same away even though we’re on different continents. I’ve always appreciated your thoughtful posts on the Forums.
Yes, I lost my baby and I have to take responsibility for whatever I did that allowed the possibility of that to happen. Only time will tell but I think the PR Forums will be fine.. They’re very well done and I think they’ll be fine..
Thanks again for your support 🙂
Cort
I was begged to be on the board of a local CFS/FM group here (non-prof) and resisted for the all the reasons you probably ran into (and glad I did!). It’s too bad that they so often come down to that…
However, I’m happy to see that you’re off to do new things! And I’m sure no matter what you put your hand to it will succeed and be good, as has been all that you’ve done so far. You have good instincts so just keep on listening to them 🙂
BTW I knew you pre PR. Tho I did join PR I had troubles using it for same reasons others here have mentioned and being busy running my own lists. Sometimes CFS and forums don’t mix so well… (and I hate FB for sim reasons! LOL)
All the best,
Zona
We go way back to the pre PR message boards! I guess those were the Yahoo groups…My how things have changed.
Non-profits can be very emmpowering for people personally and they can be rough environments at times. I was told that years ago the Board members at the CAA engaged in long, unproductive and rancorous meetings. Finally one group left and things quieted down. When you’re working on issues of import these things happen…
Thanks for your support!
Congratulations on your new endeavor! May the New Year bring you much success!!!
It is an auspicious time to start a new endeavor is it not? Thanks!
Cort,
I just want to add my voice of support. I was a regular visitor on PR since recieving my CFS diagnosis in 2005. I don’t normally post because I find it too taxing but I always found your blogs/articles to be very informative. PR and CFIDS are my two go-to sources for CFS news.
It’s a shame that politics forced you out and I hope you retain rights to the content you generated at PR. It doesn’t matter where you end up, your knowledge and insights will continue to draw an audience. I will subscribe to this blog if I can figure out how….
Best of luck,
Shar
Thanks very much Shar…How much content I retain is a complex question that I need to look at at some point.
To subscribe go to the right sidebar on almost all of the pages and look for the blog and newsletter subscription boxes and simply enter your email address.
Cort,
I want to add my heartfelt support and admiration to the chorus of voices here. Though I don’t know any of the details of what happened, I once went through a similar situation, which was both baffling and heartbreaking. What you have created from nothing is an amazing contribution to this community that won’t be forgotten. You ARE the heart of PR, and whatever you create next, I have no doubt it will be with similar class, credibility, and a sincere desire to serve those who need it. Suffice to say, whether “national blogger” or founder of a new organization, I will “follow” you wherever you go (pun intended).
Sincere thanks and all the best to you,
Lisa
Thanks Lisa…. I really appreciate it…Change occurs! Sometimes in strange directions and I think this will work out for the best. So lets keep this thing rolling and we’ll see what happens…I appreciate your support. Thanks!
Sometimes you just gotta move on. 😉
http://www.stiltman.com/html/phoenix_myths.html
‘The Chinese phoenix, feng huang, is entirety different from the fabled bird in Greek mythology. The ancient Greeks believed that only one phoenix, always male, existed at a time. That mythological bird lived for five hundred years, then burned itself on a funeral pyre. From its ashes there rose a young phoenix, symbolizing immortality.
( HOWEVER…) In Chinese mythology, there is not one phoenix, but two–the male feng and the female huang. Together they symbolize union. Later, the phoenix came to symbolize the female or yin principle, and the dragon, the male or yang principle. The phoenix is mentioned in texts dating back to the end of the second millennium B.C.E. Its presence was a sign that the reigning ruler was honorable and just…… When the Chinese philosopher Confucius (551?-478? B.C.E.) complained that “the phoenix appears no more,” he meant that the government was corrupt and there was no prospect for improvement’.
ie Sometimes change is exactlyyy what we need.
Big hugs and smiles all around.
In our suffering, ‘a legend is just being born’.
Joe Hill @ http://youtu.be/pdSbKSQYXgo
<3
Thanks Deborah…How interesting about the different phoenixes…and that is a good metaphor for the move…rising again 🙂
Thanks for that thought….:)
And, uh, I know this site is a newborn yet, but my frontal lobe is even younger than that. der…Is there a way to post profile pics yet? I see Victoria’s ‘eye’ up there. Not to be pushy…. ♥ ♥ ♥
But where Cort ‘n cohort goes, that is where I wanna be.
Hi Cort,
I am so sorry to hear all of this but also hopeful and happy that better things are coming your way. I have always enjoyed reading everything you have written and find you explain even the most complex scientific things in an easy to understand way. Like some of the previous commenters, I also think you could ( and perhaps should) be writing for some major scientific magazines and earning some big bucks. I will however follow you where ever you go and will sign up to your new site right away.
Hope to meet you again one day ( we met in Ottawa at the conference of 2011). Best of luck,
Claire ( Gamboa on PR)
Gamboa! Hi…yes, it was great meeting you and I hope we meet again. I hope you’re doing OK and thanks for your nice words. I’m confident that things are moving in the right direction…Stay warm in Canada 🙂
Hi, Cort – I am shamelessly promoting my little book ‘A Beginner’s Guide to ME/CFS’ and a big book I have co authored with Les Simpson, a hemorheologist with a special interest in ME – ‘Ramsay’s Disease.’
Two things: I wish that everyone who discovers they have ME would get a copy of my Beginner’s Guide, because, as a person laid low with ME in 1986, who has had fantastic good luck, along with very determined laziness – allowing me to have followed a recovery path over the years – I feel passionately that people who have ME need to know that there is a window right at the beginning when if you REST – essentially, adopt an invalid life-style – you can set yourself on a course towards getting better. If you try to fight it, and we ME people are fighters – you get worse. And a medical recommendation that people who have ME need to be encouraged – or coerced – into exercise – GET – is one that sends too many people on the downward path to severe and permanent levels of disability. As a psychotherapist, I seriously object to the abuse of psychotherapy in the form of CBT in the service of the ‘false illness belief’ that ME is any kind of ‘somatoform’ disorder. The help ME people need from a therapist (if any) is to maintain their self-respect and sense of identity in the face of having to adopt an invalid lifestyle which is anathema to them. But the paradox of ME is that you start off as an invalid in order not to finish up as an invalid. My wheelchairs are gathering dust, but when I needed them, they were my best friend.
The other thing is that hemorehology – the study of the physical structure and properties of blood and red blood cells – is not taught in medical school, and not part of the canon of medical knowledge. Medical students are taught that all red blood cells are biconcave discocytes – and as the standard way of treating blood before micrograph is to wash the cells in saline and leave them around for a while – giving them a chance to resume that shape, the resulting micrographs will confirm this bit of disinformation. Les has studied his blood samples after immediate fixation – a process used in operating theatres – and micrographs of immediately fixed blood shows a range of shapes – many of which are non-deformable, and therefore unable to progress through the microcirculation. There are marked differences in the shape population of red blood cells between healthy people and people with ME, and Les’ research has even shown a parallel between the shape populations of red blood cells and whether a person with ME is in crash or remission. Muscle cells, and cells in the cognitive and regulatory parts of the brain are particularly susceptible to the effects of a high proportion of non-deformable red blood cells, causing the oxidative and nitrosative stress observed by a number of researchers. This provides an explanation for many of the symptoms of ME, although not the original cause or causes. High doses of fish oil (6 g per day) or genuine EPO (4 g per day) can improve blood flow, thereby improving the well-being of people with ME.
I want this information to get out there to as many people with ME as possible – hence making my little book both easy to read and as inexpensive as I was alllowed – on Kindle, and shortly, in paperback.
I have had very grateful comments from some readers, and a five-star review – I’d be really appreciative for your comments, and support if you felt it was justified – we need so much help and encouragement in the teeth of the psychiatric mafia, and people in the UK being threatened with loss of benefits if they don’t cooperate with treatment – e.g. CBT and GET. But most urgent of all is helping people who have ME learn how important it is to conserve physical exertion….
I have recommended Phoenix Rising to my readers, and will now recommend this website.
(And as an interested student of group dynamics, I’d be fascinated to know what went on in PR just from the point of view of understanding it but it is understandable that you don’t wish to go into details about all that.)
Best wishes
Nancy Blake – BA, CQSW, UKCP Accredited Neurolinguistic Psychotherapist, piano teacher, now author..
You shameless promoter you! 🙂
I’m looking forward to checking out the book…I remember Simpsons theory but haven’t heard much about it for awhile. As for the group dynamics – small group…ultimately bad dynamics but I guess you can conjecture that.
Thanks for telling us about the book…
Cort, you have been a valued contributor to the ME/CFS community for a long time. I appreciate your staying on top of events, reporting and notifying us of new developments. I’m sorry to hear about this internal issue at PR but know you will use your voice as you have in the past whatever direction you choose. Sometimes it takes a nasty kick in the butt to tell us it’s time to move on.
You are well rid of those entanglements. I don’t do well with political in-fighting or bureaucracies so even without knowing the details, which I imagine to be gory, I can empathize.
Health Rising isn’t a great name; I’m racking my brain and trying to think of alternatives. I’d be happy to brainstorm ideas with you though, edit blogs and maybe throw in my 2 cents if you’d like.
Thanks for all the hard work you’ve done and for the news and hope you’ve offered all of us. I look forward to hearing of your new developments and direction.
Trina
Thanks. Its a real honor…
I’ve racked and racked my brain for a good name…it just never came. I know somebody out there can find one and when they do find it it’ll be obvious.
Thanks for the offer. I’ll be in touch…Thanks again for the support 🙂
Hi Cort,
I concur with all these other posts that people being what they are causes problems unforseen but one must make the best decisions first of all for oneself. I can only imagine the energy it must have taken for you to make this decision but I heartily congratulate you and wish you all the best in your new path.
I have not participated in PR forums but would often check for your info because first it was amazing to me that someone with me/cfs could think and write so clearly and also that you are always balanced and thoughtful about the information.
Those of us that struggle with this frustrating, little understood disease need advocates like you. You are a beacon of articulate strength – not to put too much pressure 🙂
Thanks for all you work previously and may you continue to shine more freely in your new forum.
Margo
Oh Margo…the pressure! 🙂 Hopefully we are pioneers for those who follow who will have more options and better choices. Thanks for your kind words…I really appreciate it. One of the benefits of leaving Phoenix Rising have been all these really nice acknowledgements…:)
I want to add my thank you here as well. I have read a number of forums on PR, and have been active in some, but what has always been most valuable to me was your articles, and your explanations of developments. Yours is a voice I trust, and I will be sure to continue reading your words wherever you decide to post.
All the best to you in your new endeavors
Thank you very much Helen. I really appreciate it and thanks for making your way to the new site!
Hi Cort,
First, I want to congratulate you on your wonderful new online home! I’m certain it will be a huge success, just like PR. I signed up here yesterday as soon as I read about what happened. I do hope you continue to post on PR, but I have to say it will never be the same without you at the helm. The PR community is wonderful and the parts of the administration that have been visible to me have seemed well-run, not least due to the fact that I don’t recall the site having been down! I know these things do happen, but it truly is a crying shame. I hope there will be 2 strong entities now, but PR was PR primarily because of your strong, intelligent, compassionate and steady presence, as the Founder and one in charge. I’ve read all your pieces here so far and am very grateful to Simmaron for sponsoring you!
Like Claire, I met you in Ottawa, too, and hope to meet you again one day… hopefully at a conference where new, real, targeted treatments are being discussed!
Take care,
Denise
Thanks Denise, I hope to post from time to time on PR. I don’t know if that will be possible; its up to them…We’ll see. I am very grateful for Simmaron – they’ve been a great help….I must apologize for all the grammatical errors in the Buzz page..writing too quickly is my Achilles heel and it showed up in spades there..(It’s all been fixed..) I appreciate your patience with that. 🙂
Targeted treatments…yes…with that noted the Drug Repurposing CAA study should finish up in the first half of next year. From what I hear we’re going to be provided with some unique options. That should be interesting.
Thanks again for your nice words and glad to see you on the new site…
Hi Cort,
Thanks for all your great work over the past years. Establishing PR was a great thing and has helped so many, all over the world. Hopefully it will continue to do that.
National blogger sounds good to me, you write the most informative and soundly based ME/CFS blog on the net. The numbers who read you should convince any publisher with the right fit to take you on.
Best of luck with whatever you decide to do Cort. I’ll watch with interest. And from an Aussie, it’s “thanks mate!” from me.
Cheers
Tony
Ay mate (always wanted to say that :))
Until it was suggested I hadn’t really thought of national blogger but I am going to float an idea for a piece to Huffington when I come for air.
Love to get props from Down Under…..
Thanks!
Hey Cort,
Oh my… The “human condition” comes to the forefront again. 🙂
This reminds me of some of Marc Iverson’s trevails, who as I remember disassociated himself from the CFIDS organization, though I can’t remember if it was voluntary or not. It was a sad day for me when that happened, as the CFIDS journal was my lifeline at the time, and it was never the same after that. It seems the founder of an organization always leaves an indelible mark, and no matter how much their successors try to emulate and/or improve on it, it generally seems to lose an element of its core vitality. Steve Jobs and Apple come to mind, and I believe the founder of MADD found herself in a similar situation.
I admire your determination to let go of your own trevails, and move on with things, though I can’t believe it’s an easy transition for you. I’ve reached the point in my health where I don’t often post any more, and so don’t anticipate keeping up with forums nearly to the degree I used to. But I did want to take this opportunity to wish you well as you set out on your new course. It amazes me what you’re able to accomplish, and have always felt grateful for all the research and advocacy you’ve done for all of us. — Be well!
All the Best, Wayne
Thanks very much Wayne and I appreciate our time together on the Forums. I am indeed lucky that my state of health, while a state of frustration to me, is so much better than so many other people.
Yes, it was quite difficult and I expect I’ll be in a transition period for quite some time but one of the nice things about an new beginning and really any work is the chance to immerse yourself in it and move on…I’m really very lucky that I like to write…something that doesn’t require physical exertion…IF you’re going to have ME/CFS and your brain is still intact to some degree I think its good be a writer.
I’m sure Phoenix Rising will be different and this new venture will be different as well. This is just the beginning…expect to see some changes over time.
I’m sorry to hear that your health has gotten worse. Good luck with that.
Thanks again.
Hi Cort
I have a suggestion for your new site’s name, how about “Courting Health”, you could spell it “Corting” 🙂
Thank you so very much for all your work, PR has helped me greatly.
Ha ha…..love it….Thanks for the acknowledgement as well…
I was thinking of call it ‘JohnsonRising’ ..:)
Cort! It’s great to ‘hear’ your voice again. I look forward to following you journey here.
Thanks for all the years at PR…….and I’m excited for your new adventure.
Madie
Thanks Madie for your support now and before at PR; it’s always been very helpful..I’m excited as well.
Dear Cort,
Though I don’t always agree with all your opinions, I love to read the enormous amount of information you always share and I want to thank you for all your great work over the past years. I don’t mind how your web page is called, I’ll be following you wherever you go.
Good luck!
Cristina.
Thanks Cristina…opinionated – yes (sometimes to my regret later on – yes). I
m sure you’re not alone :); thanks for listening and hanging with me even when we don’t agree. I appreciate it…and thanks for the good wishes….
Cort, no doubt our association will not change as conduits of information, and I look forward to future communication.
You know I believe there is always opportunity in adversity. Much like dealing with ME/CFS or FM, we find there are some relationships we must be willing to let go. I am glad to see you recognize where your energy is best spent. Change can be a very good thing.
Wishing you only the best. Celeste
Thanks for your good advice, Celeste. I learned about mistakes I made that contributed to the problems and I hope not to repeat those 🙂 and to forge new relationships and new partners.
Thanks
PS. Contact me on Linked-In or through my email in the comment review and let me know the final name of cortjohnson.org a mission statement or short blurb so I can add it to the helpful links on my website.
In healing and hope, Celeste
Cool, thanks Celeste. I got knocked off of LinkedIn for awhile but I’ll look you up again there.
Hi Cort,
Well, I’m sorry to see you leave PR, but I’ve been on a non-profit board too, and stuff happens.
I always enjoy your articles, which manage to cut through the murk like Rudolph’s shiny red nose – lol.
I think you have enough name recognition, that you could simply use your own name – Cort Johnson’s Blog or some such. I will probably be referring to it as Cort’s Blog anyway.
Good luck with your future endeavors. I will subscribe so I can keep in touch.
ps. for WordPress, I like the Ashford Framework: http://ashford.turtleinteractive.com/ It has a ton of great features already built in, so you can be up and running quickly. It’s also easy to modify your design. There is a free version and then a reasonably priced pro version. I have no affiliation with them; I’m just a user.
Caledonia
I like that….stuff happens – no ones to blame per se; things happen, even good people can disagree and everyone over there (and myself) are good people.
Thanks for the tip! I love WordPress tips…Its something I need to learn much more about…Maybe we should talk….:)
Dear Cort,
Shocked; saddened; sorry to see the founder get kicked out, but it happens a lot, so maybe that is normal progress? It happened to Mark Iverson, but the group was never the same. I dunno, but I know it hurts, and you have earned our support. Even though I had given up on PR and other blogs because of the people who don’t think they need to take a minute to think before blasting their opinion to the world, during the XMRV situation, PR was invaluable for timely and accurate information, which gave us all so much hope. You have won respect from people throughout the movement, and you should feel very proud of that. I’m glad to hear you say you have learned from this experience so you might continue with smoother elbows, and with Tina editing for you, the writing will be more polished, too. You have done an amazing job, Cort; glory in it. Perhaps the board has learned some things, too, from losing you. I also missed you and am glad your health was not the cause. Take a rest, and carry on intelligently. We look for great things from you. Oh, and please, please stop using the cfs term; it grates.
Marty
Thanks Marty, I think we all learned something. I certainly did. I’m sanding those elbows down :). Things like this shouldn’t happen without one doing some re-evaluating..
I know the CFS term grates….The problem is the darn search engines. I’ve put up great posts with ME/CFS on them only to have them disappear into the ether. It’s astonishing how much different a word in the title makes so I try to mix both in there. Actually since the top of the page is the most important for SEO I tend to use cfs in the top and then focus more on ME/CFS down further. .
So glad that you found us useful during the XMRV situation; that was our real testing point.
Thanks so much for your nice words! Let’s have a great 2013…
Cort, please change that to “Katrina Berne” instead of Tina.
And what’s wrong with calling it “Phoenix Rising 2”? It was a good name, and now you are progressing onward.
Marty
There was alot of discussion about whether to use the Phoenix Rising name again. Some people were really strongly for that for branding purposes…and some were against it. I just didn’t feel comfortable with it…It is a great name though..
I visited Pheonix Rising primarly for Cort’s analysis and distillation of new CFS information. This was the strength. The forums can be very useful at times but are mostly a maze of conflicting info. While I certainly am aware that Cort can make mistakes and many professionals and nonprofessionals do not always agree with his take on things, his well informed and well written articles are the most helpful place to gain useful, timely analysis for those suffering. I will follow Cort to this site for these reasons and hope he continues with similiar contributions. We need it. Thanks.
Thanks very much Kell. Glad to see you here 🙂
Hi Cort
Your story was one of the first I ever read at a time when I was still sick and felt very alone – I commend you on all your efforts to share information for us to help each other and commend you on staying true to your own vision!
You have shown great leadership in the CFS community.
All the best with your new site. I know it will be a great success.
Dan Neuffer
Thanks Dan
I really appreciate it. I’m glad PR did and still does break up the isolation in this disorder….that’s very important. I look forward to talking with you later about your pathway through CFS…:)
Ultimately, we are all seeking the same thing. ♥
“…..everything that rises must converge.” ~ quote from French philosopher Pierre Teilhard de Chardin
Hi Cort,
No need to add to all these well wishes. You know how I feel. I’m an eager loyal fan.
As far as the name dilemma, how about simply : “Cort’s Notes”?
The best always,
Gabby
Yes, I know very well and love it!
I like the simplicity of Cort’s Notes – simplicity is key on the web…Thanks for the idea.
Hi Cort
I really am sorry to hear this news. I followed your writings long before joining the forum and continued long after I had left. You have been a blessing to the CFS/ME community and I know you will continue to be. Sad though that you have to relinquish the name, Phoenix Rising but if that’s the case, then I’d like to see you use something that conveys a similar sentiment, that announces to the world that we can still find strength in adversity. But whatever you choose, I will continue to back it and follow your writings. You have a real gift in finding balance, dampening down expectations that fly too high fanning into flame hopes that have turned to mere embers. All the best to you.
Trish
Thanks so much Trish and thanks for all the help in the early going with PR. You really held the Forums together. Yes, losing that great name is a bummer and I’m still on the lookout for another. Thanks for getting in touch.
Ooooh nooooo!
Just got back online after a break during the holidays and read that you’d left PR – what a shocker! Really, really sad that this has happened. Also very relieved that the reason for your lengthy silences wasn’t that your health had worsened.
I came to PR during the XMRV thing and was extremely grateful to have someone posting frequently, knowledgeably and fearlessly about it, despite the storm of strong feeling this way and that from readers, and I’ve been just as grateful to have your articles on all the other research and issues that have come up since then. It really won’t be the same without you: your personality set the tone for the whole site. I’m glad you’ll at least be on the forums.
You’re already international, of course – plenty of PR readers from all over the world will follow you here, just like I will.
I’m glad you’ve found a new and exciting challenge and I wish you all the best with it!
Thanks, Sasha and for your support on the Forums. Yes, pretty much of a shocker, that’s for sure. I’m still getting used to it but I will continue to visit the Forums hope to blog at times. Good to hear from you! Hope you had a good Holidays..and thanks for the best wishes as I start on something very new…..
Isn’t it just the nature of the beast with this disease, when you think of all the adaptations you have had to make to endure another day, somehow it finds a path to more change? Cort, you have inspired so many of us who crave the intellectual complexities of this disease to stay engaged in knowing the most of that which has been hidden the deepest. So many of your blogs lead me to seek out a deeper understanding on my own. I really thought you were joking when you first started talking about “empty sella”. Since I have persued research on that one topic, I have never doubted your investigative wisdom. I wish you well as you rise from the discouragement of being sent from your place of serenity. If you can teach those of us to know more about what we deal with, then perhaps this new persuit will gain the attention of those practioners who need to have the best information available on their Professional Medical Resources; just enough to bring the information into their common language. CJ-Stelth Reporter, Investigative Super-Sluth! That which we do well, we do better with earned wisdom. Best of Luck broadening you Blogs with that wisdom.
Thanks so much Diane! I love that the blogs have enabled you to stay engaged and all your nice words…Glad to see you here!
Cort,
Congratulations on your new incarnation! I am pleased to find you and your website. There are so many good names that come to mind but HEALTH RISING is a wonderful monicker. EDMUND BURKE once said ‘All that is necessary for the triumph of evil is that good men do nothing’. You are a good man doing SOMETHING. For that we are all so grateful.
I advocated in PR for a forum on Pain & or Pain management for the ME CFS community. Perhaps Health Rising could address this in the future. The ommision of a Pain Forum in light of what ME CFS people deal with seems absurdly illogical.
I look forward to being part of Health Rising and look forward to your articles in 2013! Thank you Cort.
Thanks Michael,
Fibroymaglia and pain management will definitely be more of a focus in the blog area and I’ll keep in mind your Forum idea.
Thanks for the acknowledgement and the ideas. Please keep them coming.
You really make it appear so easy with your presentation however I to find this topic to be really something which I think I might never understand. It sort of feels too complex and very wide for me. I am taking a look ahead to your subsequent put up, I will try to get the dangle of it!|
It’s one of the more technical pieces that will probably appear on Health Rising; for one it presents a different slice of the science that we’re not familiar with and its a bit knotty anyway. I think the easiest way to approach it is to print it out in a doc or PDF format using the icons at the top of the page and then take it slowly.
Don’t know if you’re still thinking about a different name for your website/blog….haven’t had the energy to read all the comments. But the name that I keep thinking about is “from the ashes”. I don’t know anything about website names, so don’t know if this appropriate. But this seems appropriate to me as this website…and all we’ve gained from you, Cort, on PR…and hopefully our health…are rising from the ashes. I know for me, without all your work at PR, I would not have had the help and hope I have today. I realize this is what PR symbolized…and what Health Rising means…but thinking this name is, perhaps, a more vivid way to carry on that image.
Thanks for listening to my ramblings…hope it makes sense as I’m just coming out if a week of fog!
By the way…have others said the screen on this new website jumps every minute or so? I don’t have this issue with others so thinking it’s a quirk here.
Thank you for continuing on!
christine
Thanks so much Christine! Rising from the ashes is a great metaphor for what we’re all trying to accomplish….Thanks for the idea:)
The only reason for me to follow PhoenixRising was the excellent information that you provide, Cort. I’ll be at home at your new place an nowhere else.
In that vain, could you add an RSS feed to the site? I don’t feel like registering with my email address, but I would still like to read your posts on a regular basis…
Thanks so much Richie..yes I’ll add an RSS feed – its on my list and thanks for the suggestion.
Cort, am dazed and confused as to how/why this happened, but also don’t have a need to know. Am sorry for any pain it’s caused you and ultimately feel it’s a loss to all at PR.
Am wishing you well and feel entirely confident that you’ll succeed in this new endeavor.
My attraction to PR was your well written news articles and opinions, and I’ll continue to follow them on this website. I well recall your intelligence and kindness. When others chose to be combative and argumentative, it seemed you are a natural peacemaker. Think that serves you exceptionally well.
The ability to walk away from a negative or stressful situation speaks to your good sense and the ability to protect your physical, mental and emotional health. For that alone I applaud you, and am not surprised you’re feeling ‘healthier’ these days.
Regarding the name of your website, I think it will be successful under any name though I can’t help but wonder if having the acronym CFS in the title wouldn’t attract more hits on Google and other search engines.
Regardless, feel certain it will be a success, and I echo some of the thoughts posted above about your blogging abilities and think it could be a significant source of income.
Best,
Questus
Thanks Questus so much for your nice words. It was rather dazing and confusing for all of us, I’m sure. I’m still a bit shocked that it happened but it did and here we are.
Yes, it took some effort to move but it was a good move. Its important to be in what I feel is a more an empowering situation. (Of course I did add my own issues to the situation :))
Hey, I’m glad you recognize the importance of SEO; unfortunately good SEO requires using terms we don’t necessarily like – such as ‘chronic fatigue syndrome’….
Glad to see you here! and Thanks again for your acknowledgements 🙂
Hope you’re doing well.