• 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.

    To become a member, simply click the Register button at the top right.

i month anniversary from WPI xmrv press release


It's one month since WPI had their press release regarding xmrv.

Happy anniversary!:D

So, as anniversaries are a time of celebration for me, tomorrow (it's 10:30 pm PST here, but 1:30am EST so already morning "back east" as we ex-easterners say - the time zone used on the release) I will wash my hair to celebrate!

And as they're also a time for reflection for me, hmmm, how has my life changed since then?

1st and foremost, I'd say finding this forum - what a wonderful new community!

And 2nd, a more active form of hope again.

I have always remained hopeful that I will return to health and functioning at a higher level in the world. I yearn for it and do all that I can to make it happen. In fact, for the first 3 or 4 years I was certain I would get better. I spent the 1st 5 or 6 years focussing all my energy, time and money trying to get better. Well - money's gone so can't try as much (or pay for that much needed cleaner). But also I guess I realized that I had to have a life as well - I can't only focus on getting better.

The xmrv news and the signs of the world research community and $$$$ getting activated has made my hope more active.

I'm now envisioning a party of risen phoenixes, as I said on another post. I imagine meeting you all when we're better! We're thinking somewhere warm, sunny, dry, beautiful, and somewhere we can swim!



happy to be here
mountains of north carolina
I remember just where I was and what I was doing when I heard the story on NPR. It's been a wild, whirlwind, world-turned-upside-down month for me as well.

What you say about the resurgence of hope has also been much on my mind - I didn't know how much I'd put my hope away until it came surging back. Not that I was in despair, but after 5+ years I'd come to accept my limitations as a likely-permanent part of my life. The analogy that's some to me is, it's as if I'd lost a leg, and grieved over my loss through all the stages, and over the years come to accept it and realize, hey, I can still live a full life, there are lots of things I can still do - and suddenly one day out of the blue, a medical miracle and they're saying, You might be able to grow your leg back, would you like to try? A rebirth - but disconcerting and scary too.

I am slowly percolating the idea of creating a documentary photo/audio project on that topic, XMRV and hope (that's what I do for work).