-
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, 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.
User Blogs
The patient community has been on a wild ride lately. No, no studies have been published but patients are digging deeper into the studies and coming up with some surprising findings.
Three er Make That Two CFS XMRV Validation Studies...
"I am thankful for laughter, except when milk comes out of my nose."
Woody Allen
It was Christmas time and the jazz band on the corner was playing the requisite boring Jingle Bells music. I just completed my 17th treatment yesterday, and things are going well. So much so as I passed the...
Its now the start of the sixth week since leaving full-time work. Some people call it Retirement. I call it semi-retirement, as I hope to, one day, find a part time job, that is rewarding, enjoyable & takes into account my energy reserves & pain levels (which vary from day to day & week to...
I hate to ask again, but my daughter is the one that is fighting to win a scholarship AND raise research money for CFS & FM. If you could take a moment and register and vote for her, and have each family member do the same, it would make a HUGE difference! Here is the site she created about...
Do you ever feel alone, even when you are with a crowd of people? I feel that way so much now. No one understands.
My friend and her daughter picked me up for dinner tonight. And her sister in law joined us, but even so, I felt alone. Totally and utterly alone. None of them were in the...
The past few months have not been easy for XMRV. The head of the Dutch study flatly stated that he believed the WPI's samples had been contaminated. Dr. Shepard's assessment was nothing if not gloomy and Dr. Vernon's seemed to suggest that if the WPI's results stood up that they probably...
Treatment #16
Today was the best day I've had in a long time. Like my old 1976 Cutlass Supreme years ago, my engine was humming, my hydramatic transmission was smooth as butter, and I even had the "new car smell" on me. This old vehicle actually felt like all cylinders were firing with all...
Marly Silverman and others at PANDORA and the Landford Foundation have big plans. She wants nothing less than to build the first NeuroEndocrineImmune Center for the research, treatment and education into diseases like Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, multiple chemical...
Is there any more terrifying place for CFS patient to be than the emergency room the hospital? Sure, emergency rooms are upsetting for everybody but to be in emergency room knowing that the ER personnels biases towards you could leave you with substandard care, at the very time you need good...
Treatments #13 and #14
I'll get to the weed-killer analogy quickly. But first, allow me a little celebration- today marks my eighth week on Ampligen, and I've now officially entered the "plateau" phase of my treatment. Whereas at first I was seeing almost weekly improvements in things like my...
Check out the Sock It To ME thread in the project pages. It's a delightful and promising awareness project thought up by one of our own, Talkingfox. Several others have added input and yours is invited, right HERE in our forums
.
The project isn't ready to be revealed to the general public...
Congratulations Genevieve. I think 'being here now' is very important. My guess is that our systems just overreact to negative impulses. These negative impulses live in our assessing, nattering minds. Getting away from that is very beneficial.
I certainly feel much more healthy when I'm in...
Kind of funny...the problem with CFS. Right...where do I begin?:Retro rolleyes:
Well...here's at least one, of a thousand problems with CFS.
I have been on here since January. Several of my posts talk about a feeling of infection, feeling winded, adrenal problems, etc. I have felt...
<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
<o:p></o:p>
Sleep (or lack of it) has to be one of the most frustrating problems to solve in my life.<o:p></o:p>
<o:p></o:p>
For many years I thought I was a light sleeper.<o:p></o:p>
<o:p></o:p>
I thought...
I just want to dispel some of the blues, people may fill with the precarious position that they find themselves in.
Massive flare up. My lawyer forced me to do the Post Bankruptcy Filing Credit Counseling Teleseminar. I qualify under the disability provision to be exempt from all that credit counseling stuff, including having to go to the courthouse, but my lawyer refuses to believe that I'm too sick for...
My blog today includes my top 5 Treatment Recommendations outside of Ampligen - things you may need to "push" your Doctor to give you.
Someone asked me recently: "But what can I do if I am not on Ampligen? My Doctor has no suggestions for me!" My response was longer than what I am about to...
It is a fearsome thing to find oneself living outside the camp.
As the sickness of Chronic Fatigue Syndrome causes the circle of life to shrink, as the chronic element reduces our contacts with other people, we find ourselves moving (or being moved) further and further away from the campfire...
In May of last year I received an e-mail from Berit Frivold a chronic fatigue syndrome (ME/CFS) patient whod been ill for 13 years. Like many people shed tried just about everything she could get her hands on and nothing had worked. She noted that
Both she and her husband were extremely...