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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
For more than two decades, a deliberate muddying of the diagnosis of a serious chronic neuro-immune disease has misdirected much research. The disease Myalgic Encephalomyelitis was renamed Chronic Fatigue Syndrome, by the Centre for Disease Control in the USA, in the late 80's.
Because the...
A couple weeks ago I injured my left wrist while slipping on one of our dirt paths around here. They get a lot of loose gravel and debris on them when the weather turns warm and dry after months of rain, all the mud dries leaving stuff loose under foot.
A few re-injuries of the same wrist...
I decided to make a new blog that talks about how to make money from home and how to get freebies. And since it's more of a financial thing, I wanted to keep it separate from this site, but it is for people like us. Come and join it if you like, I'll be posting how to get good freebies and...
I've been in a massive flare up since yesterday. No particular reason for it, just woke up sick as a dog. Massive pain, massive fatigue, fever. I'm just dying.
I had plans to go out to dinner with a friend last night and I had to cancel. Exactly why I can never make plans, cause I never...
For weeks Ive been livid whenever I think about the recent XMRV study published by the CDC. The part that has me so riled is that 50% of the patients, or cohorts had not even consulted a physician. 50%!
These patients do not have CFS as I know it. These patients arguable do not have CFS at...
That is what im feeling like right now, like Ive been kicked by a horse in the thigh for doing gardening yesterday. (i did manage 75 mins of gardening with squatting yesterday till i was feeling sore all over and almost fell down onto my injured shoulder cause i was unable to keep my balance...
I finally found a few things that are working for me. And this is after looking for a very long time. You wont get rich off it, but it can be built up to a weeks grocery money. It really just depends on how determined you are, how much time and effort you put into it.
I started to...
I needed somewhere to come and vent about this. I am doing better, due to the shots, but I have had a set back due to my period. My period is the albatross around my neck always. It takes me from 60 to 5.
I am really sad today and need somewhere to come and let it out. I just watched...
O.k. first what do we know about epidemics or pandemics? We know that air born virus' spread very quickly. The H1N1 took 7 months to go world wide. We know that in the case of HIV it took between 60 and 70 years for it to become a pandemic. (Basically 1915 to 1975/85.)
HIV is spread both...
Let me preempt this with a caveat that I'm in over my head on this but since speculation can be fun and there is that desire to push things forward one way or another I just keep poking around in this stuff and the stuff below is what I've come up with. Take it with a grain of salt. (big grins)...
I think we should be doing more. We should be suspicious of the power of the CDC PR machine.
I think a fund should be started to take out a full page ad in the Washington Post with a letter to t American
Public from ME/CFS patients telling them that their government is supressing information...
I have waited 6 full months to be able to say this, and the day has finally arrived. So here it is: I know without a shadow of a doubt that Ampligen works. As I finish my 24th week of Ampligen, I can say with confidence that this amazing drug has performed "as advertised," and then some.
I...
]Hillary Johnson has just posted a long blog that provides alot of backup information on the controversies over the last couple of weeks. According to one of her resources the directors of the NIAID and the NIH as well as administrators at the CDC, were all involved in the withdrawal of the...
I posted this at a thread but thought i would be good to put in a blog. (I've broke it down to one more stage)
As far as stages go with CFS, my case has certain had various stages. I could break it down to 5 quite distinct stages I went throu
Stage one.. very flu like and on and off...
I am a pretty private person. I didnt use to be, but with CFS, energy conservation comes first. Heck, Im a long time member of Phoenix Rising and I still dont have 100 posts.
Yet I want to do more with my limited energy. Youve probably heard by now that PANDORA has a good shot at winning...
This isnt going to be all that interesting post but i just wanted to keep track of what was going on for me as far as medical stuff goes. I will at some point probably soon do a post on how my CFS/ME started 13 yrs ago and all the over 80 symptoms ive had with this illness.
My CFS is very...
I went to the doctor on Monday. I had the 3rd shot. I found out from my doctor, that I am not supposed to talk about this shot. Not supposed to let anyone know how I am doing or how much it's helping my energy levels or allergies. Not to mention the lack of fibro pain. The fact that I went to a...
I learned a few valuable lessons from the disabled dating site I belong to. And I wanted to post to warn others of what's going on with them.
The disabled dating sites are infested with scammers who prey on the disabled and with woman haters who only want cybersex, often with every...
June 22, 2010- Ortho releases a press release claiming that the FDA and NIH have independently confirmed in a soon to be published paper the WPI findings linking XMRV (a new retrovirus) to ME/CFS. http://www.mmdnewswire.com/xmrv-9040.html
ORTHO contacted Dr. Harvey Alter today for a reaction...
Yeah, you'd think I'd learn by now. But I had a choice of staying in or going out with my friend. And I didn't want to stay in. Which also goes back to how up and down this disease can be.
Wednesday, I was so sick with pain and all the other symptoms, that I was feeling suicidal from it...