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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
In life we have choices. Choosing gives us power. When we are thrust into a situation in which we have very little choice, it can leave one feeling very powerless. Thus has been my situation been for the many years I've been homeless in this very tent.
Until now.
For years we have tried...
I still have a problem with learning to say no when someone asks me to do something or be somewhere. And you would think that after all these years of people seeing me sick and breaking plans that they would know better than to ask me, but they still do it.
I got roped into helping a friend...
Oh, what to rant about! I had my 3rd shot 3 weeks ago. I am not feeling so hot. This last period knocked me for a loop. Let me describe that; its like being pregnant, I suppose. Eating everything in sight. Not being able to stop eating. Binging. That was how this last period was. I was...
Does anyone know results of the trial that DeMeireir conducted? What are his patients' experiences with gcmaf? I know he said in that video on youtube that one of his patients was doing much better after 10 weeks on gcmaf, but what about the rest? Supposedly he got 90 injections from Yamamoto
Veronica Di Grigoli's (Athene on the Forums) first novel, 'Evil Eye', just debuted on Amazon.com in the US after getting excellent reviews in the UK. Part detective story, part character study - think Amy Tan and Jane Austin looking for clues to a child's mysterious disappearance in...
I am so tired of being severely undermedicated when I'm in a massive flare up of screaming pain. And I am so tired of hospital staff or doctor's office staff just looking at me like I'm a drug seeker. When I'm having a flare up, like I have been since Thursday, the pain is like someone is...
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...