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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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I thought we might need a place to talk about the necessary adjustments we will be making over the next little while.
And, I kept posting totally off topic stuff in the main thread
I spent so much time looking up information on the XMRV I ended up crashing. This is the worse CFS crash I've had in a long time. Luckily my caregiver was here today and she helped me get my bills paid, etc.
Anyway, I can't read the many messages and I can't find out what I want to know. But I just wanted to post so I could feel connected to all of this.
- WPI researchers produced a landmark paper that was accepted for publication in Science, one of the most prestigious journals in the world. It was published last week.
- The paper suggested correlation between a newly discovered retrovirus called XMRV (there are only 3 others--AIDS is one of them) and people w/ ME/CFS.
- Interviews w/ the WPI people suggest that later work after the paper was written indicates to them that there is not only correlation (a relationship) but causation (XMRV is the cause of ME/CFS). More work will be required to conclusively establish such a link.
- Tests for XMRV are not yet available to WPI standards, but will likely be out within six months. Clinical trials of anti retro-virals similar to those used for AIDS are also expected to get going in this time period.
I thought we might need a place to talk about the necessary adjustments we will be making over the next little while.
And, I kept posting totally off topic stuff in the main thread
"If the WPI findings are indeed replicated, and a causal link shown..."
Mary Schweitzer has written that we should watch out for a trap: ""Beware of falling into the trap of requiring XAND to equal CFS, because it makes it all too easy to dismiss it - even without using Reeves' cooked data sets."
Anyway, I can't read the many messages and I can't find out what I want to know. But I just wanted to post so I could feel connected to all of this.
Can you tell that I'm very used to being told I have normal lab results?
And now that "scary" terms and the transmission question can arise - even more so. So I guess one of my necessary adjustments is learning to be more guarded in who I talk to and what I say - to try to think before I open my mouth.
I don't know about everyone else, but for me, to some extent, I'm allowing myself to get my hopes up a little more than I would otherwise simply because I'm in this group, and if our hopes are dashed, they'll be dashed together, and we'll go through it together, you know?