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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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Not Exactly an Emergency / The Beat Heat ManifestoI would suggest trying one of the over the counter products by Nestlé first. More affordable. The Liquid Hope and the Kate Farms formula cost... -
Not Exactly an Emergency / The Beat Heat ManifestoIs this the product you have been using ? https://www.functionalformularies.com/product/liquid-hope-peptide-high-protein/ I might have to get... -
Not Exactly an Emergency / The Beat Heat Manifestothe landlord sent the workers there, unsupervised, and so technically they paid the fine. but then nobody turned the power back on. Details...
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Not Exactly an Emergency / The Beat Heat ManifestoThat was mean esp since I cannot see how any of that was your fault.
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Not Exactly an Emergency / The Beat Heat ManifestoOh the door looks bad. Found myself here, in this new abode, with two automatic garage doors with like bicycle chains that pull one or the other...
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Tiger Woods & I may have one thing in common: we have both had our blood spun (I believe thats the past tense of blood spinning). Another branch of Neural Therapy is having blood (as opposed to platelets, like Tiger allegedly has) extracted, mixed with homeopathics, & injected back into your...
I wish Simon Wessely was right. I wish this illness really was just psychologically perpetuated. I wish that the more I pushed myself Monday to make cookies and candies for friends and family this Christmas, the more that constant icky, flu-like feeling would have receded into the background and...
It has been a three days since the cold front finally broke. When it did we got a couple inches of snow, not really all that much for around here. I expect a couple more snow storms before winter is done. This one only lasted a day this time which was very nice. Luckily behind the snow was a...
We have been having some surprisingly cold weather here in Washington State. Given that Jeremy and I live up in some foothills in our tent, its gets just a bit colder still because of the elevation and being on the frozen ground. I think it has been at least four days since it got even as warm...
Katie, wonderful, inspiring but not suprising to see that you are still on message. My PM box keeps overflowing, but our shared project is not going in the bin.
We have both learned the reality of how medicine is mismanaged and where our moral responsibility lies if we are lifted out of the...
From my blog at http://dreamsatstake.blogspot.com
You often hear the word survivor used to describe someone who has overcome a life-threatening illness or situation. There are survivors of cancer, strokes and heart attacks. There are survivors of natural disasters, poverty, rape and of war...
Hit me! Cue Rick Rubin & his bug, puffy beard in a black & white grainy film. He waves my test results around. The music screeches to a stop.
Metametrix Urinalysis/blood work just came back. These are not exciting results, but they're results, nonetheless.
Dr. Anonymous recommended...
Crashing is synonymous with CFS, a state of bodily destruction for which you often do not know the cause but that can come upon you with little regard for what you might have planned in life.
Pulled under by the unrelenting tide of another crash, it is hard not to at times feel suffocated by...
The thing about this illness that I so often forget, because I'm focused on the fatigue part: it's chronic. The way migraines, Diabetes, or back pain are chronic. So, to cope with any orthostatic intolerance (OI) or generally debilitating feelings of fog-head & paralysis, I watch TV. My need...
There are various classes of immunoglobulins and you could have a deficiency in one. An immunologist can order these tests and do a full workup. I think there are other specialized tests as well. If you have CIDP or subclass deficiencies you will be eligible for IVIG which would in such a case...
Dr. John Lathrop has a phD from Harvard in astrophysics. He has been teaching me about the stars for as long as I can remember. He is my father.
In their early days of dating, my mom once introduced him as an ivy league astrologer, & he didn't correct her (she was merely nervous, not...
It was as if someone had transported the CFSAC committee to a different planet. Down from their small perch on at top of the building into the main lobby with the banks of lights shining down and three cameramen following their every move one wondered if this might be what the future looks...
From the outside, my life would seem very simple. I do not work, there is no place I must be more than a couple times a year, my income is steady, and my needs predictable. Yet in this simplicity there is a large void that comes from not feeling as though I have accomplished much in any given...
I am so incredibly grateful for my physician. She is an internist and not a CFS specialist, according to her thinking, anyway. But I have found that everything she has recommended and prescribed has turned out to be along the lines with CFS "experts". She is protectively cautious, yet always...
I love the wind. The wind is power. The wind is a vital energy force that moves through the body when it gusts against you. I have stood upon bluffs where the wind is whipped into a frenzy, so strong that one can briefly lean into it without fear of falling.
Now my experiences with the wind...
Hey Everyone! I really liked how this was written by Jody as it helps bring to light some of the invisibility many of us with CFS or severe MCS have faced. As our lives spin crazily out of control, more often than not those we know will turn away from us, societies support systems for life...
Ahhhh, the sanctitude of solitude.... Saying what's on your sleeve in a peaceful space. Although the words 'is it safe here' do pop up in my mind. Are we ever 'safe' online?
In other communities we thrive when we get more 'friends' and we are eager to share the littlest details with...
Was reading a post about Teitelbaum when it occurred to me that the discovery of XMRV with the subsequent expected flurry of research and treatments (keep your fingers crossed), may put a lot of people in the CFS business out of work.
I don't know about you, but I'm tired of expensive...
Two years ago, a little Winter Wren started frequenting our camp. We often see them in the bushes in the woods, flitting from one spot to the next without ever a having a care for the giant who stands watching them. They are so small, other than hummingbirds they are one of the smallest birds we...
I am reposting this from something I wrote on CFSKC. It is something for us all to think about. I'd like to clarify that I am talking about this in the sense of activism and avoiding attacking people. I am not suggesting that we be medically, artificially unconditionally grouped together...