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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
The odds have always been against the researchers with the guts or commitment to take ME/CFS on. With its unfortunate name, vague definition and complicated, multi-systemic nature its gotten little respect and even less funding. Everybody knows the statistics - last in the NIH in funding.$20...
Tuesday will be exactly four months since we made the switch to a Paleo lifestyle.
I can still hardly believe how much meat we consume each week because I have never in my life been a huge meat eater. The previous 12.5 years of vegetarianism, over a third of my life and nearly all of my...
There are better days.
Between my last post and this one, I had a ruptured ovarian cyst that nearly made me pass out, put me on Darvocet and laid me flat for most of three days. Not better days.
Today, amazingly, I had some energy to spend.
I got up at 4 am, prepared and served 3...
I am finding it difficult to obtain time to write here as I would like. Jeremy's computer broke down about a month ago and while he is without it, I don't really have the same amount of free time to delve into my writing.
We are still on the way to it being fixed - but the motherboard we...
Yes, the WPI has been frustrated, and sometimes vocally so, regarding the inability of the three XMRV studies to validate the original Science study results. Yesterday, in a surprise announcement Annette Whittemore threw the gauntlet down, so to speak. For sure she did it politely but her...
Hello,
Is anyone else wondering why no funding has gone into NIAID for XMRV research? Is there something we can do about it? How about our advocates. I believe the only grants so far have gone to NCI for research on the possible prostate cancer connection. XMRV is a retrovirus, so is HIV...
I want to apologize. I wrote "To be or not to be?" Well, I am a total fraud. I am wearing it....all of it, in my flannel pajamas and the tears that keep pouring down my face. I was better then and God, isn't it easy to throw out there how one should be like this or that? SHOOT ME...
(repeating my blogspot blog here again... mostly just typing out of loneliness really, and thinking maybe I can try to describe for others who don't have this illness, what it's like to live with)
Aching all over, horrible feeling of pressure in head, chest pain. Want to be lying down but too...
I admit it. I now have a pot-belly. And it bothered me.
After being underweight for the past 2+ years, struggling with a lack of appetite and the associated difficulties in maintaining weight, since being on Ampligen for 2 1/2 months, hunger has returned! But with it came a whole new set of...
All paths lead nowhere. At the end for all is death, whatever that may mean. The only thing that counts is that the path has heart.
If the way has a heart, the way is a good way. It will make you joyful and strong.
Without heart, the path will make you curse your life, and make you...
Courtesy of the Wall Street Journal we finally got a look at what will surely be the most comprehensive XMRV study that we'll see. It will surely clear up many of the questions surrounding the virus.
It's a full bore effort; one that probably only the federal government could take on. Six...
Dr. Goff, one of the top retrovirologists in the field, taked with Dr. Racaniello about XMRV for almost an hour. This was a rare opportunity to hear how experts in the field assess the XMRV/CFS connection. Here's my take on what they said from the XMRV Buzz Page
XMRV and the Prostate - One...
Fluoride, which has never been FDA approved is in many cities drinking water and has been in most toothpastes since the 1950's. This should be alarming to most, since Nazi Germany first used it upon its citizens and later it was used in many rat poisons. This is one more toxin that many of us...
Does anyone have ideas for questions which might be posed to the 3 Party Leaders during the UK election debates, which would highlight our plight ?
Questions can be submitted at :
http://news.bbc.co.uk/1/hi/uk_politics/election_2010/8589502.stm
This is a huge opportunity to achieve...
"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...