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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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Nobody's ComingFrom what i've Heard in the News with Carla and Millie I am fully convinced UK is the worst country to live in as a ME/CFS Patient. Not that its... -
Not Exactly an Emergency / The Beat Heat ManifestoHoward, I agree with Hufsamor
And I'm really glad your neighbors (one in a pink bikini no less!) were kind and helpful, as well as the fire...
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Nobody's ComingI wonder if Dr Claire Taylor might be able to help. I have not had an appointment with her personally but I know people on this baord have talked... -
Nobody's ComingI"m so sorry that you have to deal with this. And you're doing a great job. I am in the US, but we have some similar version of the same... -
Nobody's ComingIt’s truly atrocious. I’ve written about it much on my blog. I remember in the beginning years, thinking, oh they are going to come running in...
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John Herds recent post on the past and future of ME/CFS advocacy provided a welcome change in tone from many of the strident posts weve seen lately and provided much room for thought. An important part of the post, however, was more of the same; while the posts tone was mild the post itself too...
I really want to go to Ohio. I know I'm not even on the long list, but I need help. I know I listed my functioning as a 6, but it doesn't reflect that I'm functional about 1/3 of the day about 1/3 of the week.
Yesterday, I was a 5; not too tired, but brain-fogged. Then I ate a delicious...
...right out of my body. Stop stirring around my brain & reabsorbing & poisoning me. I cannot get you out!
Yesterday, I will call a 6, though toward the end of the day, immense brain fog & some serious fatigue kicked in. Compared to how scary last weekend was & how dark my mood has been...
My favorite place to be is in my pool...which is where I feel the best! It's the best place to visit with a friend or read a book. There I exercise by swimming and stretching without stress on my body. It cools down my furnace body. And best of all, it provides alone time for thinking and...
FIBROMYALGIA What you can do about Chronic Pain and Fatigue by Maryam Ehrlich Williamson
This is the first thorough, user-friendly resource that outlines the causes, symptoms and a full range of treatments for a condition that affects up to half a million Australians. Since Fibromyalgia...
Monday, August 3, 2009
I was thinking about how being a chronic, we are so isolated, and some of the things I miss are so very mundane.
I miss having a friend drop by for a cup of coffee or whatever.
I miss the type of chitchat I used to have with people in my homeschool group...
Hi all,
I am new to your group and am very impressed with the PWC's who post on this forum. I was diagnosed with fibromyalgia in 1990, but in looking back, I also had MCS's, cognitive dysfunction and many symptoms, except fatigue
I eventually got involved with the fibro community and have...
Saturday, August 1, 2009
I write to my imaginary friend, the one who is always there, always wants to KNOW me. I write believing I can hear a response (my imaginary friend ALWAYS gives a response, lest I feel unloved or alone).
When I find indifference and lack of regard in the rest of...
Some animals use echolocation to orient themselves. They emit calls to the world and listen for echoes from their environment.
This helps them determine where they are, where they are going, and what if anything is near.
Here is a poignant metaphor. We call out to find our place, to see if...
How does a wealthy man get, and stay, wealthy?
He doesn't do it by spending everything he has.
Bingo, CFS'ers, Push-Crashers. All you really need to know about the role of rest and regeneration. In a nutshell.
If you keep spending your energy, ... well, it's gone, isn't it.
It...
Years ago, in the depths of ME/CFS, I took a course called the EST Training (now called the Forum) which was designed to increase one's vitality and participation in life. The course worked - altho I still had ME/CFS afterwards - it did increase my vitality enormously.
Taking A Stand - One of...
Friday, July 24, 2009
I posted an article on Ncubator yesterday called No Disability for Jody. Since then Ive received two lovely emails from friends who were shocked to learn of my state of affairs. I appreciated these so much.
It got me thinking, though. And I want to clarify something...
Cross-posted at Behind the surface
Anne Shirley has been a kindred spirit ever since I first watched the Kevin Sullivan production of the classic book by L.M. Montgomery. The first time I heard her talk about "so much view for the imagination," I remember thinking, someone else thinks like...
Wednesday, July 22, 2009
If youve ever had a tendency to feel indispensible, a good run-in with CFS will cure you of that.
You will discover in short order that you are indeed dispensible, and possibly even forgotten, faster than you can imagine.
It is a heartbreak.
And it is a...
Monday, July 20, 2009
If an area is cordoned off and you dont heed the warning and go ahead anyway, dont be surprised if you fall through.
All those symptoms making our lives a misery? Cautionary signs weve been ignoring and then were surprised when we crash.
Our idiot lights are...
Saturday, July 18, 2009
I'd like to say I do this for the good of mankind. That that's why I write here.
I'd like mankind to be healthy and happy, don't get me wrong.
But I am not here on the net for mankind.
I am here for me.
Because the silence from the rest of the world has been...
Friday, July 17, 2009
My world had gotten very small.
I would look around and see, really, nothing out there for me, beyond my own four walls.
Suffocating. Depressing. Infuriating.
So I took a leap through the portal of my laptop, into the virtual world of the net.
The reason I am...
Monday, July 13, 2009
I guess its been a good week. I know it has.
Yet I feel unsatisfied.
That seems strange to me. I am involved in things that just three months ago would have been beyond my ability to imagine. If youd told me then what the next three months would hold, I would have...
Sunday, July 5, 2009
Lazarus! Come forth!
Imagine Lazarus, appearing in the opening to the tomb, still wrapped in his graveclothes, a miracle standing before the people
and everybody just wandered away
leaving good ol Lazarus to unravel himself and figure out his own way back into...