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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
(As originally posted at Sundog Tales)
Imagine living 20 minutes away from here:
<img alt="Ho'okipa Beach Park, Maui" src="http://img215.imageshack.us/img215/8498/bytaminatoratflickr.jpg" title="Ho'okipa Beach Park by taminator at flickr" width="500" height="328" />
Ho'okipa Beach Park...
I've been thinking of starting a blog here for a while now, but I wasn't sure what I wanted to focus on. I could just write about health, but that information seems best reserved for discussions where it is relevant, otherwise it can just be depressing at the end of a day. I could write my...
Music
by Robert Walser
Music is the sweetest thing in the world. I absolutely adore notes. I'll run a thousand paces just to hear one. Often when I'm walking through the hot streets in summer and hear the sounds of a piano from an unknown house I stop in my tracks, ready to die on the...
(as originally posted at Sundog Tales
Its another sunny day here in the Pacific Northwest. Starting into the best time of year not too cold, not too many bugs, and a few more sunny days. It only lasts about a month, usually most of April though this year it is late.
Life has been moving...
There is a stereotype for people with ME/CFS and related disorders that is based on the view that we are just pretending to be sick. This varies from accusations of blatant fraud to a pathological need for attention. The infamous biopsychosocial view of ME/CFS is a variant, in which we do not...
ME/CFS has been called the invisible disease. Those of us who are less ill are not visibly sick. Those of us who are very ill are so sick nobody ever sees us in the street. We are pale shadows of who we should have been, pale citizens of pale societies.
I look at these people and what they...
Sucks but I could of got CFS mentioned in the interview if the name was shorter and more decent. I tried to say my health issues to the reporter and called it "chronic fatigue immunity dysfunction syndrome" as I hate saying chronic fatigue syndrome... only to have the reporter say the name was...
from "Wants"
by Grace Paley
I saw my ex-husband in the street. I was sitting on the steps of the new library.
Hello, my life, I said. We had once been married twenty-seven years, so I felt justified.
He said, What? What life? No life of mine.
I said, O.K. I don't argue when...
It sucks but my health insurance (MBF) is changing so it wont be really suitable for me anymore... its stupid. They've capped the ambulance useage to once per year.. Ive used that 6 times at least in past year...
POTS collapse when another rang.. I had to be stretchered out of a place ...
how helpful it is to read what we...pwcs...write about how we cope with this illness. but there seems to be an extra measure of encouragement when a friend without me/cfs seeks to understand. i pray this psalm, written by my friend after reading my last blog entry, will bless and encourage you...
On Occasion
by Grace Paley
I forget the names of my friends
and the names of the flowers in
my garden___ my friends remind me
Grace___it's us___the flowers just
stand there stunned by the sun
A long time ago my mother said
darling___there are also wildflowers
but look___these I...
.
PWC's have a high rate of cellular die off which is often the cause of so much fatigue. When I was tested, my Cell Free DNA Test showed I was approaching the same level of cellular die off as someone on chemotherapy.:Retro eek:
Bill Sardi shows the problems and dangers of high cell die...
and not just
lazy...depressed...mental.
where does your mind go when you're knocked down? to...
what others may be thinking?
if you got yourself into this state?
what's the point of ever doing anything if i have to pay with days, a week, a month, or longer in bed?
how do i pace when...
Have you ever wished for a book you could give to something so theyd REALLY understand what you are going through? Nasim Jafry's The State of Me does just that in the form of an entertaining novel. The author did an amazing job of turning the horrible experience of living with chronic...
"Who was Mary Shelley?"
by Lorine Niedecker
Who was Mary Shelley?
What was her name
before she married?
She eloped with this Shelley
she rode a donkey
till the donkey had to be carried.
Mary was Frankenstein's creator
his yellow eye
before her husband was to drown
Created...
We have yet another acronym for the disease which David S. Bell called The Disease of A Thousand Names (1991) in one of the first books published on this illness. Bell is a well known medical doctor in Lyndonville NY, the site of one of the first CFS epidemics in the 1980's.
Since Bell's...
We have read the PACE trial report in the Lancet. The PACE study, GET / CBT idea ,is a repeat of the old theory that the ME/CFS patient is imagining that they are sick. Exercise and psychological consultation will make them better. The PACE study is flawed. The only waty to combat PACE is to...
Teaching About Diseases
by Miroslav Holub
Puppet diseases are tiny and thread-like, with funereal fur coats and huge ears. And little clawed feet.
There is no fever, just sawdust sifting from the sleeves.
Diarrhea is like intellectual melancholy.
Irregular heartbeats is like...
In order to help patients get more vote, I have produced an utility sheet allowing printing instructions to prospective voters telling them how to do it from a piece of paper.
Download the attachement,
Printing instruction: To avoid clipping of text, ensure you click on "scale to fit...