Phoenix Rising as a Non-Profit

Discussion in 'Fibromyalgia Main Forum' started by Don'tLook, Feb 28, 2010.

  1. Don'tLook

    Don'tLook New Member

    Phoenix Rising as a Non-Profit?

    Cort Johnson just posted his idea today.

    A non-profit? To do WHAT ? WHAT ?

    (Is Phoenix Rising 'for profit' now?)

    He wants to know how to do it.

    Why doesn't he just ask his good friend Mike Dessin? He is
    VERY knowledgeable on the subject.

    Who is the sizeable donation from? Will this be a 'mystery donor'?

    The pattern is repeating itself.

    WAKE UP!

    And smell the coffee ...
  2. AuntTammie

    AuntTammie New Member

    I am not quite sure what you are accusing Cort of here.....PR is a wonderful site that helps and supports a lot of people & has the latest research......Cort puts a lot of time and effort into it and it is not like it is free for him to do far he has been running it on donations, but I see nothing wrong with trying to turn it into a non-profit as long as that doesn't mean that it will start to cost forum members a lot of money to access the forum (I would happily pay for it if I could afford to, though, bc I believe that it is a very valuable site, as is this one)
  3. springwater

    springwater Well-Known Member

    So you have taken on where 'no fool' left off?

    Or are you one and the same?

    God Bless

  4. gapsych

    gapsych New Member

    I do not know all the ins and outs of non profit status.

    When I think of nonprofit, I think of social service agencies out in the real world not websites. Unless the plan is to hook up with a real world social service, such as Mikes description of what he would like to see happening, the outreach of his medical care, teaching other doctor's Dr. Whitfield's "treatment", perhaps building another clinic. I think Dr. Whitfield has at least two clinics at this point.

    Are there any other websites that have nonprofit status only on the website and not any organizations with which they are affiliated?

    I have no idea, but this will be something to research.


    ETA I just read about the "sizable donation". Now I am really curious.[This Message was Edited on 03/01/2010]
  5. CortJ

    CortJ Member

    Smell the coffee! I loved that enema post - glad its still getting around. :).

    Phoenix Rising is 'for profit' right now in the sense that it brings in a couple of hundred dollars a month (virtually my only income). Its failing as a profitable enterprise given that that that means I'm 'earning' about $2 an hour. That's far better, though, than the years it was in existence when it didn't earn any money at all.

    Turning Phoenix Rising into a non-profit is a way for people to donate and receive a cut on their taxes. More donations = less strain on my family - who have been supporting me for the last 8 years. It also conceivably could be a way to apply for grants but thats nothing I know much about at this point.

    Unless the mystery donor wishes to reveal him/herself they will, of course, be anonymous - a very suspect thing obviously - what, after all, could be someone's motive for donating to an information site on CFS - quite frankly I shudder to think of that. .... :)

    [This Message was Edited on 03/01/2010]
  6. Don'tLook

    Don'tLook New Member

    Give your money to Mike Dessin.
    Give your money to Cort Johnson.

    Give away any hope you ever had of credibility for CFS or ME.

    Have your illness forever associated with amygdala retraining, Emotional Freedom Technique, coffee enemas, faith healings, energy envelopes, nosodes, neural therapy, BioPhoton machines , pendulums, "heavy metals", "toxins" and "worms in your livers".

    Do it.
    Do it now.

    We became involved to try and help.
    Obviously, that help is not wanted.

    Our observation as outsiders is that CFS/ME is being hijacked right from under you by Alternative and Homeopathic Medicine interests.

    Your illness of CFS is becoming their poster disease of 'proof' they can "heal" and the promotional material for their profits.

    We will no longer attempt to present the truth that such attention and support to these sites and personalities is pushing your illness farther and farther into the psychiatric discourse.

    The issue does not lie with the Mike Dessin's and Cort Johnson's of the Internet.

    The issue lies with the community that gave them their "prominence" and allows them to operate.

    Good Luck and Good Health,

  7. CortJ

    CortJ Member

    Yes please give your money to Phoenix Rising - the best purveyor of information on the internet on XMRV, Rnase L, orthostatic intolerance, cardiac conditions as well as other aspects of CFS.

    (It's said to see this great Board that has been so helpful over the years become the refuge of National Enquirer-like posters. It does nobody any good. )

    Unfortunately you're all about to become implicated in the grand scheme that DL, mirrorsandlights etc. have laid out.

    Phoenix Rising is partnering with Prohealth to put its ads on its site. Yes, that's right - Prohealth ads will soon be all over the PR site. Why did I choose Prohealth? Because they have a reputation for integrity and because they donate substantial amounts of money to ME/CFS causes and because Rich Carson is a great guy. (I've worked with him on the Fair Name Campaign).

    Of course you must realize that by adding its ads and its name to my Phoenix Rising site that Prohealth is indirectly aiding and abetting this atrocious non-profit scheme and all of you - with your use of Prohealth message boards are also indirectly aiding the scheme. I wish it wasn't so.

    The rot goes so deep! Rich Carson implicated! Will his address, too, go up on Mirrorsandlights webpage? :):):):)

    By the waywho is mirrorsandlights? What is his/her name? Why not allow comments on that Wordpress blog? Why the mystery? :) :) :) What does mirrorsandlights have to hide? DL can you fill us in on that? Who is m&L?

  8. sickofcfs

    sickofcfs New Member

    Don'tLook says:
    <<Give away any hope you ever had of credibility for CFS or ME.

    Have your illness forever associated with amygdala retraining, Emotional Freedom Technique, coffee enemas, faith healings, energy envelopes, nosodes, neural therapy, BioPhoton machines , pendulums, "heavy metals", "toxins" and "worms in your livers".>>

    C'mon, Cort doesn't have that kind of power.

    "Give away any hope...."
    "Have your illness forever associated...."

    This is the kind of writing associated with yellow journalism.

    See Wikipedia on "yellow journalism" for more info. Extract: "It may feature exaggerations of news events, scandal-mongering, sensationalism, or unprofessional practices by news media organizations or journalists."

    I don't buy into the Mind/Body stuff at all. I use Cort's website to keep up on current ME/CFS news (conference, interviews with researchers), and as a first stop in researching pharmaceuticals and supplements my well-respected ME/CFS physician recommends. I ignore the info that doesn't fit my view of ME/CFS and it's treatment.

    A quick glance at the front page of Phoenix Rising shows links to many XMRV topics, transcripts of lectures by Dr Mikovitz, Dr Bell, and Dr Klimas, the nav panel leads to XMRV info, a doctor list that includes many major names, general info on disablity, treatments (including both pharmaceutical and alternative and clearly distinguishing between the two) and lots more.

    That's hardly a predominance of "...amygdala retraining, Emotional Freedom Technique, coffee enemas, faith healings, energy envelopes, nosodes, neural therapy, BioPhoton machines , pendulums, "heavy metals", "toxins" and "worms in your livers."

    I just don't click the buttons for the topics I'm not interested in. It's easy -- try it.

    Cort puts in a lot of effort to consolidate that info. I don't have a problem with him earning some money for that work. Cort isn't requiring anyone to donate. He's giving his work away for free. If someone wants to donate to help Cort, fine. If you don't, fine. You'll still get the benefit of Cort's work for free. Where's the problem?

    I'm with kjm in that I prefer to make my serious donations to research organizations. Other people make other choices. I don't want people to tell me how to spend my money and I don't presume to tell others how to spend theirs.

    If you don't like Cort's website, don't read it. Most of the rest of us are smart enough to choose what to read and decide for ourselves what we believe and don't believe.

    The notion that Cort has enough power to significantly change the direction of ME/CFS research and treatment seems very far-fetched, and the idea that he wants to take it completely out of the realm of science even more so, based on what I see at his website.

    That's my opinion and I'm entitled to it. Your opinion may be different and you're entitled to it, too. But both of our opinions are OPINIONS, not FACT, and should be presented as such.
  9. AuntTammie

    AuntTammie New Member

    Well said, sickofcfs!!!!

    and Don'tLook, go stir up trouble somewhere else....seriously, it's one thing to try to help protect people who might gullible enough buy into something that will harm them or that will only take their money and give no's even ok to start an honest discussion if you have good reason to question something, but it is quite another to simply try to start a fight (& the latter certainly appears to be your motivation)

    .....Cort's site has an abundance of all sorts of types of info ranging from alt to mainstream, it does help a lot of people, no one is being forced to spend any amt of money to go there, it does not hurt anyone, and he is quite upfront about what he is doing....if you don't like it stay away (pretty simple, really)

    for you to insist on attacking a valuable resource and someone that many in the community consider a friend is ridiculous and YOU do more harm than Cort has ever done (well you would if people actually believed what you are posting....fortunately the people who come here are smart enough to make up their own minds based on the facts & don't need to listen to twisted rants....and hopefully those outside the community don't look to you as a representative of us - if they did, it would be no wonder why they think we are a bit off)
  10. sunnyslumber

    sunnyslumber New Member

    We should do all we can to help it stay up. It does provide:

    I.) Information (Research, Treatment, Doctors etc...)
    II.) Analysis
    III.) Interviews with some of the top Researchers
    IV.) Large Community of Fellow Patients

    and many more things I can't think of at the moment!
  11. quanked

    quanked Member

    Why does it have to either/or in terms of treatment? My experience in life has taught me to be inclusive (my ideal) in virutally all domains of life. Alternative therapies and "scientific medicine"--I am glad to try them both. What works for one does not necessarily work for another. I don't find either/or thinking to be useful for the most part.

    I have been to Phoenix Rising. It seems open to all and to all kinds of thinking and ideas. I grow weary of those who have a fit each time someone even hints of psychological issues in terms of these diseases. I know that my dd's are NOT psychological but, overtime, these dd's have developed some psychological components as most chronic and long terms dieseases do. Psychiatric treatments are NOT going to cure/fix my health. I do believe that having some mental health support, at times, would be useful and helpful but my hope does not lie in the develoment of psychological treatments.

    Cort Johnson is providing a service that many of us use. If there is some kind of information that you believe he is not offering on his site then let him know. If your are concerned about how PR will evolve then be part of the process to develop this non-profit. Become a board member or an advisory board member. Non-profits, by their very nature, have to be open to public scrutiny. The public is invited to attend their meetings. Part of forming a non-profit is developing mission statements, vision statements figuring out what population you want to serve, how it will be served and so much more. It is a process that you could have input in if you are concerned. Obtaining a non-profit status is not as easy as it sounds.

    I do not know how I would be doing (psychologically speaking) if Pro Health and now Phoenix Rising did not exist. I am grateful for both. Just knowing I am not alone in my suffering and confusion is a great comfort that is not available anywhere else that I know of. I would have nobody to ask questions, nowhere to find information, nowhere to complain and nowhere to find understanding without them.

    Finally, if you believe that Phoenix Rising is doing harm to the CFIDS/FM community then create your own site offering what you believe in.

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