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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.
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User Blogs
"Nuclear power plants contain radiation inside and are less hazardous than cell phone towers that emit radiation outside. More dangerous than the AIDS virus, Swine flu, the Bird flu and AlQueda combined is microwave technologies. We believe that the world wide increase of cell phone towers and...
Apologies if I've posted this before now. I can't remember if I did, ot not. This was a general article I wrote on diet & health last year (I think?) - not necessarily ME/CFS/FM.
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There is no one diet that...
I've been thinking alot lately about how my grandmother ate and why she was never sick, ever.
I lived with my grandmother from about age ten till she passed away when I was about 23 or so. During all that time, she never got a cold and she never got a flu. It was incredibly rare for my...
Yes, I'm going to talk about sex in this post, because one of our challenges is that this hideous virus not only diminishes our libido, but sometimes completely wipes it out. But I'm also going to discuss what I've found to be one of the best remedies for that part of our symptoms list, which...
To support the following petition for a BBC Panorama Investigation into the governments misconduct with regards to the diagnosis, treatment and research of ME follow the link:
http://www.ipetitions.com/petition/meinvestigation/
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Katie! I was wondering where, and how, you were. I'm so happy you had a lovely holiday and a good decision made. Too bad life had to load on the crap to welcome you home afterward. I hope you can recapture some of the Venice glow.
http://www.historycommons.org/entity.jsp?entity=johnathan_fishbein_1
The above link is about the former Dr. Jonathan Fishbein, who was the highest ranking whistleblower in America's history. He was fired from his duties as Director of the National Institutes of Health NIH... He exposed...
Id contacted Dr. Ravindran earlier and mentioned I was coming out to DC but we fell out of contact and I assumed my chances of getting the study in while I was in town were nil. It didnt help that I waited for several days before I called but several hours after I called to tell him I was in...
At Easter, in recent years, it was difficult to contemplate spending time with family (or friends) due to overwhelming pain or fatigue (or both), so it was with undeniable pleasure that I looked forward to this Easter, 2010.
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There are so many people here that linger in the shadows. They read, they say nothing. I wonder about these people. Not wonder as in, "What's wrong with these people? but what is their life like?" Then I think to myself, perhaps they are too ill to write anything or maybe they don't want to...
This is a prime example of what happens to me if I have to do things in real life.
I had to go to a tenants meeting on Tuesday morning because we're having a problem with a mentally ill person on our apartment floor. He has a long history of having been institutionalized and a long history...
Please be advised that your questions to Dr Mikovits from the UK re the study can now be directed through www.xmrvweb.me.uk. Please bear in mind that we are only just at the early stages of setting this up and if you could refrain from bombarding us for the first couple of weeks it would be...
from a reply to tee...
God help me, i guess im just too concerned about what people think who dont really know me when one of the first things they learn is that i have what im afraid they may think is chronic laziness!! myalgic encephalomyelitis sounds so much more like a real, scientific...
lately i've been wondering if i have alzheimer's. not to take away from those who have this horrendously debilitating illness. but...i'm wondering, do you ever wonder this...
when you can't remember ANYone's name?...
when you stop remembering how to spell?...
when you don't remember what...
I overdid it this past weekend, and paid for it on Sunday. Nothing about this disease is predictable, except the unpredictability of it I guess, but I was feeling so good after Treatment #18 I actually got suckered into thinking I was "normal" last week. Big mistake. Talk about a roller coaster...
A month ago the head Dutch researcher, Kuppeveld, stated that he considered XMRV story over. After what he described as an intense effort to find the virus failed he was folding up shop on it; there would be no more XMRV studies coming out of his lab.
No papers have been published since then...
This is a new Blog...tried to create it as a new thread but it wouldn't let me!
I have received the following update from Dr Mikovits which she has asked me to pass on to you all:
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UK study: We are scheduling London first. Those draws should take place as early as next week. So if there...
It feels like a bit of forever since I last wrote here. Thank you to everyone who has stuck with me during this slow time. There have been so many comforting and encouraging thoughts sent our way, thank you.
I am very happy to be able to say that allergy season has mostly ended for the year...