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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
In 2008 the ME Association conducted what maybe the most comprehensive survey of treatment effectiveness ever done in ME/CFS. Over four months 4,217 people took part, most of them online. It was by no means complete with twenty five treatments or treatment types covered but it did provide a...
An old friend/coworker, someone I've worked with for like maybe ten years or close to it on the net, he and his wife just had a baby. And he's been sharing the pics with me for awhile. And while I am very happy for them, I find it very painful for me. I've been sterile from this disease for...
There is a slogan that pops up in feminist discourse from time to time: sexism hurts men too. And while I don’t know that it’s an argument most men find so persuasive they then choose to abandon the patriarchy, I couldn’t help but think of the refrain while reading the discussion in the comments...
The Half Page Ads for ME/CFS for the Wash Post Are Ready for Feedback
The ad samples are ready for your review. Please go here: http://mcwpa.org/?p=166
Go here to give your feedback: http://www.forum.mcwpa.org/viewforum....
Look under "Print Advertisements" and then look for "Ad Samples."...
There was a prison breakout in the USA this past weekend of historic proportion. And like most escapes that require patience and tenacity, this one took 10 long months of preparation. But when the time came, the escapee acted almost without thinking, and ran with freedom in his eyes, and hope...
One of the hardest things for me to deal with when it comes to this disease is the passage of time. In a very strange way, because I got sick at age 21, I'm somehow stuck at that age, in that time. Time, for me, has stood still. My life stopped at age 21. No more work, no more college, no...
It occurred to me that it might be easier to explain CFS to family and friends by asking them to watch a movie on the web.
The first one is a 12 minute news special. It would not be much of a time investment for someone to watch.
The next one is a 1 hour CFS documentary from 1993. It's...
My Malwarebytes software protected me from a malicious website when I click on: Columbia jacketsc . Better to be safe than sorry. I hope this posts helps and I hope it is not a malicious link but clickers be warned!
I have Chylmydia pneumonia (tested very high). I also had a tick bite with a red circle many years ago. I just remembered 25 years later after reading somebody's else post on lyme.
Anyways, I have tried the CAP protocol in the past. It helped me improve somewhat, but more importantly looking...
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There, Ive finally said it!
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There is not enough time in every day (these days), to do all I want to do.
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It only seems like yesterday that the days...
I can't guarantee that this blog is 100% accurate because I'm not an expert in mouse virology! But I think it's all accurate, after having done some heavy-duty reading about it all. This is purely a discussion of my understanding of the subject, as a lay person.
Any comments or corrections are...
Hi everyone,
I was asked to write an 'XMRV for Dummies' on another forum (i.e. a simple explanation of XMRV research to date)...
I thought it might also be helpful for some people on this forum, so here it is...
It's such a complex subject, and I've written a lot of it from memory so there...
Tag-along-Timing
Can we take advantage of.... a worldwide analogous event?
"Unrescued Underground Disease" would be better understood than the assinine label we've been assigned... UNfortunately. At least it makes more sense & tells it like it is.... (or begins to give a hint... a...
Today, as the last of the miners were rescued, the world watched and shared in the joy as this happy fairytale ended. What could have been a horrible and bleak prognosis, seemed to defy all odds.
I watched or heard bits and pieces. There were 33 of them.. trapped 33,000 ft down... for 33...
Federal officials are again sitting down with CFS physicians, researchers and patient advocates to discuss federal policy. This is the third meeting since XMRV burst on the scene and its an important one. (See agenda: http://www.hhs.gov/advcomcfs/meeting...12_agenda.html )
Day One
The...
The first thing that has always alarmed me about being stranded is the fear of running out of food. I have used a few online resources to buy food and other household items. Although you do have to pay more, it's better than going hungry or freaking out about "who will help me"???
Here are...
As the CFSAC meeting and our continual quest for real funding gets underway its important to understand what kind of disorder the NIH believes CFS is. One way to do that is to look at other disorders theyve decided are also worthy of little funding. Remember being put in math class as you...
Once again I excused myself to Shane and took another trip to the restroom. This was getting a little embarrassing but it wasn't all that unusual. The pee every 15 or 20 minutes process had started earlier at the OFFER Conference. Believe it or not that darn carpeting had triggered this; the...