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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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They must have run the assays (or samples), don't you think? They must have asked for them - the question is why didn't they use them and what were the results? That's such a big puzzle - that goes to the heart of how they view the WPI and what its results mean. They had 8 months! They must have done something with those samples.....
They didn't use them in the study - why? They said they didn't have validated XMRV positive samples....thats true if you mean validated by several sources.... They threw an XMRV plasmid for Dr. Silverman in blood sample - that's very straightforward - you know XMRV is in there - you put it in there and you know what concentrations it's in - so you know how far your tests can go; there's something to be said for that.
A human sample is different - you don't have those set parameters to work with so it's messier...but I would imagine finding XMRV in a native blood sample is different from finding it in a spiked blood sample...how I don't know.
The CDC lead author had XMRV positive samples for 9 months. The CDC tested the WPI positive samples and could not find XMRV. Rather than tell everyone that fact and then say: "We are going forward with a method that may or may not work, with patient samples that may or may not be as good as samples we could get from subscribers to Newsweek." Anything else they did or did not do after that failure is irrelevant. I have a lawyer in a very small firm in California working on this matter, but I think someone who knows a lot more about this should be confronting the CDC on this "study" and what it really means.
I would guess that someone there ran the assays, as Mindy Kitei's sources said they did.
Disturbingly, this now makes THREE negative studies that failed to report that samples were sent to and/or received from the WPI. In fact, the WPI had to reveal this information themselves in each case. You would have thought that the CDC, having seen that the WPI made this information public in the case of the other two studies, would have come clean on their own. Though perhaps they were counting on the fact that not as many people would be aware of any subsequent WPI press release...
My understanding is that when you 'spike' a blood sample - or a water sample - with XMRV plasmid you are essentially just dumping retrovirus into the fluid, not necessarily making sure that it is integrated into the cells. That makes it potentially much easier to detect. When you test a human blood sample for XMRV, the cells may not be replicating and therefore the virus is not replicating -- especially if the sample is not fresh blood. Therefore you are very probably looking for latent virus that is hidden in host DNA. This demands a better method for detection, which is why the WPI, NCI, and Cleveland Clinic had to use RT-PCR and/or a culture step to pick up the virus. The difference between looking in a spiked control versus in a patient blood sample is, as Dr. Mikovits said in one presentation, like going from looking for a needle in a haystack to looking for a bowling ball in a bathtub.
The difference between looking in a spiked control versus in a patient blood sample is, as Dr. Mikovits said in one presentation, like going from looking for a needle in a haystack to looking for a bowling ball in a bathtub.
Thanks for this Dr. Yes. I know that the Van Kuppeveld study received samples from the WPI but which other -ve study are you referring to ?
Disturbingly, this now makes THREE negative studies that failed to report that samples were sent to and/or received from the WPI.
I know that the Van Kuppeveld study received samples from the WPI but which other -ve study are you referring to ?
while I cannot go inside Dr Yes's mind
I had forgotten about Huber's study. I hope (when and if she gets published) she mentions the WPI samples, but somehow I doubt it.....I am aware that Huber did receive samples, ran them, decided it was contamination... she didn't give many details in her presentation, just very quickly and vaguely skimmed over the slides. Her study was negative btw, has not been published yet and so far turned down by 2 journals.
I wonder what would happen if you apply for benefits and say "I've never seen a doctor, i've been diagnosed via telephone".
My point, which I thought was obvious, was that if we were truly organized, we would be connecting with prostate cancer organizations, especially with regard to the latest generation of XMRV antibody tests described in my link.
Cort,
This is where I get on my cohort soapbox. Who is 'US?' No wonder it is such a difficult subject.
We MUST stop comparing apples to kumquats! No wonder we're so confused, no one knows what they are studying. There is no shared language, no shared understanding. Patients, researchers and government agencies are still talking past each other - NO COMMUNICATION.
The research community has had 30 years to sort this out and we're still getting studies like the CDC XMRV debacle. When are we going to stop looking to the CDC to address this issue in a good faith manner?
Anything (past, present or future) short of the Canadian Consensus Dx criteria should be reclassified as a study of "persistent fatigue."
Better yet, reclassify everything that meets the CCDxC as a study of ME.
We can't wait for this to happen. It has to happen now. It needs to be THE top priority of both the IACFSME and the CAA.
What i dont get is so many other illnesses have recognised subgroups, so why dont we have offical recognised ones. eg take bipolar for instance.. bipolar 1, bipolar 2, rapid cycling bipolar, mixed bipolar, cyclothymic ... There are so many different illnesses in which are divided into many forms. Why on earth arent thdy doing this for CFS. Maybe this is something which needs to be pushed so we dont keep being left with stuffed up studies.
That's no proof other tubes won't work of course, but it's another example for someone using heparin tubes, like Lombardi et al. and VIP Dx.
I wonder what would happen if you apply for benefits and say "I've never seen a doctor, i've been diagnosed via telephone".
I'm sure Frank ruscetti said xmrv can be found in plasma. Isn't that what Vernon ment about the tubes.