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    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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sunshine44
2 min read
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User Blogs
What if none of it was ever really that far out there. It was merely a matter of pattern recognition? And once you see the patterns, you cannot unsee them. I am sure some wonder, who does she think she is to be so vocal on some matters. She doesn’t have academia training etc in this area and...
sunshine44
4 min read
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User Blogs
Sooooo, I thought I would do a brainstorm sesh here. To assist me in navigating some important upcoming shifts in my life. Note: please keep things in the more upbeat section for me as I have much to traverse and not a lot of bandwidth for worst case scenarios. Thank you 💗 To begin, yesterday...
cfs since 1998
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ME/CFS started in 1998 with primary Epstein-Barr Virus infection (infectious mononucleosis) in high school. Acute symptoms for ~6 months. Improved slightly over the years, but peaked about 60-ish on David Bell's scale. Went on high-dose Olive Leaf Extract and immune stimulants in 2009-2010 but...
sunshine44
4 min read
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Some of us have been through so much that it can be quite difficult to process the whole of it. It comes in pieces for me. Especially during my newest and latest eruptions aka crises. And, I decided I forgive them. I’ve known this. But I get lost in the emotions when retriggered by...
linusbert
1 min read
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User Blogs
our beloved cat Linus "Bert" died today, has been put to rest. may he rest in peace in the eternal pastures of heaven.
sunshine44
1 min read
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If you are familiar with titanium walls of the system as a whole, then you understand. “The thing that gives me hope is that one day this titanium wall of a system, I will be able to break through it and get access to the resources I need.” - Roger
sunshine44
1 min read
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User Blogs
You guys have been through enough sad stuff lately. Me too. A song for your troubles. ** so many videos won’t upload here for me anymore. Strange. It’s called ‘skin shape-soul groove 7 inch vinyl’ on YouTube. second song since the first won’t show, ha! Golly gee, that neither. Led...
sunshine44
4 min read
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User Blogs
I am so angry. I am so angry. I am so angry. And I need a space to let this out right now. I am so f ing tired of my situation. I’ve literally been through beyond hell past 3 months. No, not much has changed. I’m still mostly in depends now since covid. Total survival mode. I my good...
Howard
6 min read
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User Blogs
Gimme a Lift My hulking son carried me up the stairs at 2:06 p.m. this past Sunday afternoon. Yes, fortunately he's muscle bound, or we never would have made the ascent. Due to the constricted space, the initial wheelchair effort massively failed (rolling me up the stairs). And well before...
JenniferLO
2 min read
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Well it's been quite a few years since my last entry! I had my amalgams removed safely, and followed Andy Cutler's chelation therapy to get the heavy metals out, and I got a lot better! I went from being bed bound to weight lifting, working, walking the dog an hour a day, being a mum again...
Howard
6 min read
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User Blogs
If I disclose this symptomatic information to my doctor, I suspect she'll try to medicate me, as well as having me psychoanalyzed. Heck, I'm not even sure they psychoanalyze anymore. There's probably some newfangled term defining intrusive mine probing these days - a glorious task that doesn't...
sunshine44
1 min read
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So much pain has come to me and my family from Lyme disease. And the mysterious ness around it of no one wanting to treat me. And as the years went on… I learned why. Sharing an interview with the amazing and brave, Kris Newby.
Blazer95
1 min read
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User Blogs
Hi dear reader. I have been Viewing my Situation very critically in the Last few days and realized I feel lost and overwhelmed. I am at a Crossroad. Go for 12 weeks intense abx Treatment of minocycline and rifampin to tackle bartonella suspection (its never confirmable because of shitty...
Howard
6 min read
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Background The following statistical summarization includes all initial conversational interactions that have taken place since I've been wheelchair bound (nearly two years) Note: I utilize a power wheelchair to get around. Most of my initial getting around took place within a nursing home...
sunshine44
1 min read
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User Blogs
Sometimes nothing is more healing than love. If you cannot listen to this song, I will post the lyrics and you can lay in bed and imagine your hand on your heart unless you are strong. Enough to put it on your chest and imagine people in the world swaying to this song together. Through the...
sunshine44
3 min read
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User Blogs
“Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.” This verse has been in my head lots past few months. I have no idea what my new baseline is. I can confirm it may be worse than any baseline I’ve yet...
SpinachHands
3 min read
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User Blogs
This is what my partner would say in the earliest days of their "crash" last December. We were both waiting for the alarm bells to be sounded, and a doctor to come racing in to the rescue after hearing how severe their condition was, ready to help. But nobody was coming. I've been really...
Blazer95
2 min read
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User Blogs
Hi fellow ME people, this entry has a quick summary wich is intended to be reader friendly for severe ME patients. I think we all should do this more often to include our severe fellows, if possible. 3 Days ago I underwent the HELP-apheresis in germany. The procedure was quite a ride giving me...
Howard
7 min read
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User Blogs
I didn't want to call the fire department. No one does. Unless they have to. You see, I sort of got myself into a situation. Not immediately life-threatening, yet not exactly life-affirming either. At least there was plenty of time for solutions; dozens of minutes, a couple of hours, but perhaps...
Artemisia
1 min read
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Perhaps everyone's scent addiction has gotten out of hand when I walk outside and see not a soul, but can smell their laundry detergent from when they walked to their cars minutes (hours?) before. Or that I can distinguish my apartment neighbors' different laundry scents from sitting out in the...
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