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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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As long as we are speculating, I would throw out one additional possibility; the CDC is controlled by dark forces of evil. Sure, this fly's in the face of secular thinking and scientific reason, but it is entirely possible that malevolent force(s) exist on a spiritual plane and take corporeal form in certain cases in order to wreak havoc and sow misery in this world.
(snip)If I could either write or draw, I would have such fun with this
Artist who did the covers for most of the old Conan paperbacks, would probably have been able the catch the essence of the dark minions of the CDC fiendishly at work disrupting the lives of CFS/ME patients.
http://frankfrazetta.org/images/frazetta01.jpg
Ironically, a painting he did of "Conan the Destroyer" sold at public auction last week for $1.5 million dollars. . .
But I still can't understand how, if the egos of the CDC are involved, why they would risk looking so obviously stupid.
No doubt, it's hard to find XMRV, but they're the CDC for crying out loud, it's their JOB to find rare and strange and new viruses, and they have been sent a number of positives, the reagents, the instructions, and have been offered assistance by people who DO know how to find it, so I'm not buying 'hard to find'. Hard for who? VIPDX seems to be doing it right and left.I think the missing piece is that XMRV is hard to find.
I think the stumbling block is their history with ME/CFS. By claiming that they have actually been studying idiopathic fatigue (and calling it CFS) they can (or think they can) get off the hook for missing all the neuro-immune, serious illness symptoms. "We weren't looking at the people with neuro-immune symptoms, they were not a part of our studies. Our research cohort does not have XMRV -- see, we proved it with this study."
Then follows, "How wonderful that someone has discovered that XMRV is a factor in a serious neuro-immune disease. It's unfortunate that WPI mistakenly labeled them CFS patients, because it's clear they're not with all those neuro-immune symptoms, but let's just go on from here. We have a newly identified group of patients with neuro-immune illness who have XMRV. Our wonderfully talented retrovirology department is going to be deeply involved in investigating this newly identified illness."
With some fancy dancing and under-the-carpet sweeping they'll try to sidestep the hard questions about Incline Village and the origin of the name "CFS". The media and the public could easily let them get away with it because they haven't been involved in all the history. They'll take the CDC more or less at its word. If the CDC is going to be held accountable, PWCs who suffered through CDC neglect are going to have to stand up and demand accountability.
Just my theory....
ego, sexism, lack of biological abnormalities early in investigation, inability to admit a mistake, etc.
Tina
But the flip side of this coin is that if xmrv turns out to be an essential variable with "real ME/CFS", then separating out the (xmrv-) "fatigued" folks could be a good a thing. It will clarify the problem with differing diagnostic criteria regardless of whether or not the CDC takes responsibility for their motives.
You know, it is really a sad statement on the level of our progress as humans that some of our smartest can't use their reasoning power to perceive a reality, but solely depend on their eyes.