You can view the page at http://www.forums.aboutmecfs.org/content.php?78-The-XMRV-Files-The-Mystery-Continues
Welcome to Phoenix Rising!
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.
To become a member, simply click the Register button at the top right.
I really think it's premature at this point... but do love your articles... Keep eating your Wheaties!no need to draw conclusions yet.
Perhaps they were so convinced of the XMRV/MECFS association that they felt they were doing us all a favour and just exercised poor judgement? Certainly WPI aren't the first lab to offer private testing, but other tests are usually offered where a therapy (regardless of how dubious) is also available. I'm genuinely baffled as to why they felt the need to do this when they must have anticipated that their findings would be 'controversial'.
Did WPI anticipate negative studies outside their control and hoped to head them off with this additonal data? Do they know more about XMRV's pathology that they haven't as yet published. If they do, and its bad news, was it really responsible to have people running around with an XMRV positive result?
I think this has already been covered in at least one thread. As I recall (correct me if I am wrong) WPI only offered a test after Cooperative Diagnostics? started offering their test (PCR only?) which only found negatives. I don't see how the WPI can be blamed for offering a more valid test in the face of blatant commercial interests by another Lab.
WPI (Judy Mikovits presentation) publicly stated that they anticipated negative studies. I don't see how this correlates to them feeling a need to gather 'additional data'?
The WPI may not have told us everything they know about XMRV's pathology simply because this is ongoing research which they would be criticised for feeding piecemeal to the media (it does seem on this count they cannot win).
I have no sense whatsoever that there is 'bad news' thay are keeping from us, on the contrary. Judy M's recent email response to an enquiry (which she said could be quoted publicly) clearly stated that there position has not changed re there original paper. She also stated (yet again!) that other studies have not found XMRV because they have not used WPI's methods, whereas NCI and NIH? WPI's collaboartors did.
Why should there be a problem with you asking unpopular questions? Your exact points have been asked by many others. No need to delete any post other than an offensive one. I'm just not sure what more there is to add? Haven't we picked this to pieces put it back together picked it to pieces over and over and again?
IMHO your arguments don't hold up. But others might think differently. We agree to disagree...and move on.
Is there anything more to add? Or can we move on?
To impugn the motives, even obliquely, of the Whitemores, who have funded this undertaking themselves, or of Dr. Peterson, who has given his career to solving this illness for us, is beyond my comprehension.
Dr. Coffin has suggested it’s been in humans about 40 years.
Where did this come from? Because if the Science study was indeed a blinded study, then this method is impossible.Because WPI researchers looked harder for XMRV in the patient samples than they did in the control samples this suggests that infection rate of XMRV in healthy controls could have been greatly understated.
Cort, thank you for another balanced report on the subject. And one that is so easy to read.
There was, however, an alarm that sounded as I read. You said:
Where did this come from? Because if the Science study was indeed a blinded study, then this method is impossible.