About Us

A certified 501 (c) 3 non-profit, Phoenix Rising provides people with chronic fatigue syndrome (ME/CFS) information to support their health and wellness and online programs to enhance their health and well-being. Phoenix Rising publishes articles, a blog and a newsletter, maintains the largest ME/CFS Forum (forums.phoenixrising.me) and contains  the largest database of articles and posts on ME/CFS on the web. We’re currently engaged in several online projects to designed to enhance patients treatment and physician options, reduce their isolation and empower the ME/CFS community.

The Phoenix

In many ancient cultures the Phoenix bird is a potent symbol of rebirth that is  periodically reborn from the ashes of its own destruction. This website and now non-profit organization, created by a chronic fatigue syndrome  (ME/CFS) patient, was born out of the hope that ME/CFS patients, too, will someday rise from the ashes of their often shattered lives and that the disease itself will emerge from the ash heap of recognition it now receives into the light of serious and sustained scientific endeavor.

Your donations and volunteer work make Phoenix Rising possible.

 

 

10 comments

{ 10 comments… read them below or add one }

Judith Fleet Wisdom November 26, 2010 at 9:56 pm

Cort, somebody, anyone, etc.,

I ‘ve been subscribed using my former email address–. As poor and overworked and appreciated Cort is I kept having trouble posting–my user id worked erratically.

While I shall still use that email address for ME/CFS material, perhaps changing this wondrous whatever to my more reliable address. It is . I really need as so many of us do the material provided here. It has kept me going and having gotten disabled with this monster in April 1980 and now getting an intransigent and slightly different type flare (more gut and brain stuff) I beg you to see that I get this regularly at my new address. Co-Cure is very important as well but I shall keep that coming to my old aol address. Many thanks though I will really thanks you when it happens.

Ignored and isolated by my colleagues in this crime (ME/CFS),

Judith Wisdom

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Cort November 27, 2010 at 12:30 pm

Hi Judith – I hope this works for you. Let me know if you don’t get a blog today. :)

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Spring July 7, 2011 at 3:57 am

Hi Cort,
I want to ask you if you want to place the article http://niceguidelines.blogspot.com/2011/07/dutch-doctors-blunder-by-dismissing.html

somewhere on your website? I know the author and the patiënt would like to have it on your site too.

Best regards,
Spring

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K2 for Hope August 12, 2011 at 5:36 am

Thanks for being here.

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Julie January 22, 2012 at 7:06 pm

Hello Cort,

I am the Editor for the newsletter of Worcestershire ME Support Group, (UK). I would be most grateful for your permission to use the Ottowa Conference Reports III http://phoenixrising.me/archives/6651 piece in the next newsletter.

I found the information very instructive and that it gave hope – I would like to be able to pass that along to our members and beyond.

Should you grant permission, the Website address, author, date of writing and of access will be included automatically. If you would like to receive a copy of the newsletter please let me know and a copy will be forwarded to you.

I would be grateful for your permission to include the article. Thank you for your consideration.
I hope to hear from you soon. Take care.

All good wishes

Julie :-)

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Cort January 25, 2012 at 5:02 am

Sure thing Julie. Glad you found them useful.

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Kathy Gatti January 14, 2014 at 10:40 am

Your article http://phoenixrising.me/archives/13083 states that ketotifen is not available in the US. This is not true, you can get it legally from some compounding pharmacies. I get it at Harbor Compounding Pharmacy in Costa Mesa, CA. They mail it anywhere in the US. What strikes me most about this forum is that many of the people have similar symptoms to mine. I was diagnosed incorrectly with fibromyalgia about 12 years ago. Recently I have found that I have a mast cell disorder similar to mastocytosis. Masto patients have abnormal numbers or abnormal mast cells. There is a secondary form in which another disease process in the body causes the same symptoms of masto, which is what I have. The understanding of this disease is developing at this time. A few years ago it was not diagnosable. Anyone with these symptoms should get their tryptase level checked when the symptoms are bad. If it is elevated, that indicates that something like this is their problem.

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Charlotte Nielsen October 10, 2014 at 4:46 am

Hi Phoenix Rising,

We all need that (what the bird symbolizes).
I went over your page about Lipid Replacement Therapy, very good, informative, as I have recently had conversations online with NTI/NewYork and NutriLInks/UK – selling both NTI/ and AllergyResearchGroup (the ATP energy powder) AND the BodyBio PC products.
BodyBio has not felt like answering me yet..(haha) – whilst NTI and NutriLink have sent me several e-mails, and we´ve been discussing differences etc.
What confused me in the first place, is the fact that BodyBio advertises against any other products on the market : “soaked in oil” as BB claims in their video. This is not true. BodyBio can not produce “water-soluble” phopholipids” (=fat). I am not sure what BodyBio put in their products, just as I can see your text is wondering a little. If water soluble, just choline, just as a Vit B…BB says one thing and does/produces another, it seems.

My daughter is injured by Gardasil (HPV-vaccine) having diagnosis pointing at FMS with Mitochondropathy, ME, toxic neuropathy. Hence this good reasons to give LRT. She gets several supplements as well as NTFactor/ ATP Energy Powder.
If you have someone who´d like to discuss/help me clarify the products, I´d be glad. I spent a week (on/off line) to read and understand these products. I found that BodyBio is most likely best working in the context “PK Protocol”, i(ncluding IV by Essentiale Forte N from Europe), Glutathione etc etc
I can send you all the links I found.
We live in Denmark :-)
Best regards, Charlotte

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Charlotte Nielsen October 10, 2014 at 4:48 am

Do you have an e-mail contact for more private comments? Thanks.

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Kina October 10, 2014 at 8:02 am

phoenixrising.me/about/contact

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