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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
After many years of being away from full-time work, I just committed to a short stint of FULL TIME work.
After a week...I have managed...three days. I feel like somebody has run over my body with a lawn mower. And this is an improvement. 13 years ago, I was like a frog stuck in...
From my blog Dreams at Stake
<i>An April 2003 Journal Entry</i>
I had one of those rare but stunning moments the other day where I just felt flooded by the utter profundity of this world at the miracle of actually being alive and part of this infinite web we have yet to fully understand...
I wonder how many with ME end up insane due to all the trauma they go throu (or a virus attacking the brain?). Im not only physically and emotionally weak at times, Im nowdays mentally weak too. It's like Ive been pushed to far over an edge.. and my coping mechanisms to stress are nowdays...
Having the day from hell and need to VENT.
I had to drive to welfare this morning to drop off "semi annual" review papers. Now, this is after I just gave them everything three weeks ago for my annual review. Why is there a "semi annual review"? I don't know. But apparently they were too...
as originally posted at Sundog Tales:
It can be useful to minimize wasted time when paying out of pocket for a specialist visit, having to travel for the appointment, or not being well enough to make multiple trips to your physician. Over the years I have learned a few tricks to help us get...
I absolutely hated gym class in Junior High. I was a skinny kid growing faster than my Mom could sew, and I had no arm muscles whatsoever. So when the dreaded "physical exam" days came around, I usually got physically sick. Trust me, vomiting cereal before you have to do pull-ups does not help...
I was diagnosed with West Nile Virus in 2003. I did not work for 18 to 20 months. I am a RN. I now have 4 kids and am a Pastor's wife. I currently am on a short medical leave. I worked on an Acute physical Rehab unit. Prior to WNV I was very active and smart. Since then my tolerance for activity...
MLV related viruses - a simpler explanation
For a more in-depth discussion of MLV-related viruses, please see my previous blog entry, here: MLV-related viruses - an explanation
MLV = Mouse Leukaemia virus
MLV's are mouse retroviruses that cause cancer in certain mice.
Judy...
The past year or two my CFS/ME has been strange (by strange i mean different to how i hear it affecting others). Most of the time i can be completely symptom free if i avoid physical activities eg just sit in a chair all day and dont move except type.
When i do start to over do things...
What the FDA/NIH study means to us... my personal take on the situation...
Hi everyone,
It seems to me that this news has sent our world into a bit of a spin... it has mine anyway...
The results of the study weren't quite what we were expecting, and we are not quite sure what to make of...
This blog relates to the paper published by the NIH/FDA in USA which found MLV-related viruses in 86% of ME patients, published on 23rd August 2010. http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf+html
I've now also written a much briefer explanation of MLV-related viruses...
Reposted from Sundog Tales
Yesterday was this year's trip to see our MCS/CFS specialist who's office is about two hours away. (For last year's trip see <a href="http://sundogtales.wordpress.com/2009/10/10/back-from-the-wizard/">Back from the Wizard</a>) The weather couldn't have been better...
For like the past week or week and a half, I've been so overly emo. Like every little thing makes me want to cry my eyes out and I'm not usually like that at all. And things really haven't been that bad for me lately in regards to everyday life. I got my medicaid back, finally. No one is...
Do you remember those moments in your life when something so momentous happens that time seems temporarily suspended, and you become acutely aware of your surroundings? For example, people frequently ask, Do you remember where you were when you heard about JFKs assassination? Or when you first...
Just to backtrack a bit, I first saw Peterson in September of 2009. It was the same old story: what can I do to get these gutless NK cells back in gear? Immune modulators, like Ampligen and gamma globulin. That day, I tested for XMRV, and my positive results took the leading role for the next...
Do you ever feel so held back from life that you get into a totally crazy mood where you just want to do something totally out there?
I was seriously considering dying my hair olive green! Not the whole thing, just some parts of it. But that's how stir crazy I get. I swear, I may yet do...
Want to go away? Come with me to the past.
I am going back, to a place thats far away, how about you, do you have place a place to stay why should I care? Dave Mason
I am sitting in my air conditioned apartment longing for the cooler weather we had yesterday. Yesterday was a nice day...
My life has been led by far too much fear.
If you had asked me ten years ago while I was still healthy, I would have been very sure that fear played little role in the direction life was taking.
I would have been wrong.
Over the last several months I have been thinking about fear's...
There has been a lot of questions about how a retroviral model would fit in to the world of ME/CFS lately. Could it be responsible in outbreak situations and could it go into remission from time to time, and what would be the mode of transmission if it does both of those?
I've been laying...