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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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Hey Rrrrr,
I'm pretty sure you're in it.
We're all pretty fried, it's so easy to get disoriented.
ETA It's now in the XM... ah? OMG...? XM...? I can't remember the virus!
It's got its very own section now under the general heading of: ME/CFS News but right on the front page.
I'm beginning to wonder how many people XMRV is going to peel off.
ETA It's now in the XM... ah? OMG...? XM...? I can't remember the virus!
I suppose I am the only warped person on this forum. But if Reeves does his two-step, fast-talking, blow-hard number on this latest news, why don't we do this: Hire a big bus, put as many ambulatory CFS'ers as possible aboard, and drive to wherever they are holding one of those big blood bank drives. First we let the CDC and the media know publicly that we are going with the intention of giving blood, then see what he does....
(Of course, we would stop short of actually giving it, but he does not need to know that...)
Just a fantasy, but an enjoyable one.
Prof Simon Wessely's Wikipedia page now says this:
"In relation to the XMRV virus found in two thirds of CFS patients, Wessely has pointed out that this research fails to model the role childhood abuse and illness behaviour plays in the disease"
http://en.wikipedia.org/wiki/Simon_Wessely
(it also fails to model the role suppressed memories of alien abduction plays, the man's a total numpty)
"Mikovits believes the association may be even stronger than the present work indicates. DNA sequencing only picks up active infections, she says, so she wants to study CFS exposure to the virus more broadly. In an unpublished investigation, she and her colleagues analyzed blood cells in about 330 CFS patients and found that more than 95% expressed antibodies to XMRV, whereas about 4% of healthy controls did."
I suppose I am the only warped person on this forum. But if Reeves does his two-step, fast-talking, blow-hard number on this latest news, why don't we do this: Hire a big bus, put as many ambulatory CFS'ers as possible aboard, and drive to wherever they are holding one of those big blood bank drives. First we let the CDC and the media know publicly that we are going with the intention of giving blood, then see what he does....
(Of course, we would stop short of actually giving it, but he does not need to know that...)
Just a fantasy, but an enjoyable one.
That's hysterical! But actually, not a bad idea...
It's an excellent idea. If the CDC fails to keep pace with the science, it may even be necessary.
Glad people like my scheme to get attention of those who have historically chosen to ignore us.
Hopefully no one will have to resort to this kind of thing, but with the track record of certain institutions -- I won't name names but one of them may have the initials CDC -- you never know....