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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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The only group with the incentive to find CFS, the ORWH, doesn't have any money.
If the Alter study is published, we (the patients) will suddenly have a voice. How do they expect to shut us up on this,
I will say that when I told one dental assistant that XMRV is a retorivirus like HIV she sort of pulled back from me. So I realize we are going to be getting treated like lepers who may spread that horrible virus to everyone. But too bad. I've been treated so horribly for having a "fake" disease for so long that actually scaring people with a contagious virus is sort of "cool" in an admittedly immature and nasty sort of way. Or maybe because it's more real and I'm no longer a lazy flake but a sick person with a virus.