Discussion in 'General ME/CFS News' started by Stone, Jul 24, 2010.
I think it's quiet obvious why things have happened. It's a combination of reasons.
Ooooh! I'm quite liking this one!
I'm a very graphical/visual person and many ideas stick in my head as visual snapshots rather than collections of words. There's something wonderfully satifying about malevolent forces from a spiritual plane wreaking ME/CFS havoc and sowing ME/CFS misery in the world.!
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.
Ironically, a painting he did of "Conan the Destroyer" sold at public auction last week for $1.5 million dollars. . .
Nice! But surely some of our dark minions look like everyday folks.... most of the time ....[eerie music]
The Devil's Grip . . .
Or Bornholm's Disease, is sometimes confused with CFS/ME. It is also known as "The Grasp of the Phantom"
Even sufferers of that disease have an organic viral explanation for their misery. The CDC will never let that happen with CFS . . .
As far as spirits at work in the CDC, we could be dealing with jinn here. That would explain everything.
Most Westerners know the term genie from the tale of Aladdin and his magic lamp or the hit 1960s sitcom, I Dream of Jeannie. But genies, or jinn, in Islamic theology can be much more sinister. Some are good, others bad.
They are believed to be normally invisible but have the ability to assume human or animal form and are often said to be motivated by jealousy or revenge.
Read more: http://www.dailymail.co.uk/news/wor...ossessed-evil-female-genie.html#ixzz0ukyBuv97
Research on ME in the 80's, before CFS was invented showed that persistent Coxsackie B was very prevalent in patients. It was another thread of research that was dropped before the facts could be teased out.
I have a persistent Coxsackie B infection.
Should have said, Bornholm's disease is caused by Coxsackie B.
Hmmm. I love all these replies, most every one of them is thought provoking. But I still can't understand how, if the egos of the CDC are involved, why they would risk looking so obviously stupid. After all, WPI sent them their own "Find XMRV Yourself Kit" in September, 2009! Actually, I would have expected egocentric dopes like the CDC to try to steal the spotlight by very early on "finding" XMRV all over the place, pinning it on everything from leukemia to hemorrhoids and acting like they discovered it or knew it all along and were just waiting for (bla bla bla) *insert anything lame here that sounds half way plausible*. That's how I would expect them to behave if they were trying to cover their butts and pretend to look competent and justify their funding at the same time, not continue to deny, deny, deny, cover, cover, cover. They are scientists, their bosses are scientists. There's a whole lot of SCIENCE that stands opposed to them and they MUST know how incredibly backward they will look when the smoke clears on XMRV, and the smoke surely will at some point indeed clear. I mean, really, publishing a completely negative XMRV study NOW? Seriously? Is it truly possible that they truly think this is going to make them look better or protect their funding and jobs while the FDA/NIH, the Japanese, the Germans, the WPI, the NCI, the Cleveland Clinic and I'm sure lots of other labs can find the thing? And then revamp their website to even further contradict long known and established SCIENCE regarding CFS which is not under debate? What's the angle? They have to know that science is marching circles around them, so why would they wave their stupidity flag and blow their ignorance horn so loudly when it's so abundantly evident to any thinking person, even to us, with half our brains tied behind our backs much of the time, that they have their heads stuck up their :ashamed:'s Is it just me or is this completely insane? There's something I'm not getting, a piece of the puzzle is missing, a big piece.
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....
Reasons for CDC deplorable conduct...
It's clear the CDC facility should be checked for toxic mold and their water supply examined. Every employee should be screened for mercury and other heavy metal poisoning. The top bureaucrats, like Bill Reeves', homes should be examined.
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.
Obviously I don't count the CDC, the BMJ study or the Wessely study, in the hard to find bit. The Groom study is the only one I consider to have tried, but they still should have done a replication study. You will have to forgive me, I somehow forgot that this thread was really about the CDC, and not the entire XMRV discovery process. Ooopps. Personally, I would like to see the CDC in court.
This seems the most likely scenario and I would hate to see it happen. 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.
add to the list jealousy... MR.Switzer was trying to show a connection between monkey retroviruses and disease... basically somebody did what he couldn't do at the WPI ... tied a retrovirus to a series of common chronic disease states... correct me if im wrong...
I just had an idea....
What if we get one or two of these transparency groups involved????
THe kind that use the FIA to get information and post it....
isn't there a group in the UK doing this with the WAR ? you know the ones that are helping to show all the civilian deaths... and holding everybody responsible... i wonder if this would be useful for us?
Why couldn't we get some advice from them?
I love that idea, judd!
That is my take on it.
It definitely would be progress.
A different classifying of XMRV + was going to happen no matter the latest CDC developments. They are not leading this. WPI knew there would be a new name, so they made one: XAND.
This is the biological marker for disease (if it is shown to cause disease) that all the scientists wanted, needed. They like to see things under microscopes instead of patients complaining of symptoms that can't be seen.
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.
It is interesting that my GP was just commenting on this. He has an integrative wellness practice. I told him about the CDC study and the implications as I see them. He jumped right in and explained that unfortunately the trouble with today's practice of medicine is that a clinical diagnosis is not readily acceptable by many practitioners and researchers. If they can't do a test for an illness, it must not be there.
Thank goodness he is of a different breed.
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