Yes, as I alluded to weeks earlier it was a rumour that taking anti viral drugs affects the XMRV test result, and not fact.
In first defence of the person who (allegedly) gave out wrong information from VIPdx - the VIPdx employee is not a doctor or scientist, hence they were unaware of one enormous fact.
Anti Viral drugs do not supress Retroviruses. Anti-Retroviral drugs do that.
In second defence of CFS patients who worry over such things by anecdotal evidence, patients are rarely doctors or scientists either. These concerns are bound to happen and spread like wild fire over the internet. If people are desperately ill, have little to no money, and are very keen to pursue cutting edge Science then they (as I would be) would be sure to seek out any possible reason their result may come back negative. (Interestingly we now learn the main reason is that PCR technology is not accurate enough yet to detect XMRV in many cases, even at VIPdx and certainly not at Co-Diagnostics who haven't had one positive sample reported). Hence VIP have pulled their PCR test and will soon release an alternative along with keeping the culture confirmation test that picks up 'live' XMRV creating havoc in our bodies. Obviously, not all people get to that stage, and the other assays are needed such as serology/IgG antibody.
This kind of 'crossed wires' situation of patients (understandably) obsessing over their possible causes for negative results will continue until health agencies finish their XMRV investigations alongside the WPI, and give the anxious public some hard information. The band is already 'playing on' and has been for over two decades. The CDC must act soon with education on XMRV, at least in the form of how to access basic testing - the various methods of testing, what and how they all mean, and when they will become available. The news broke publically in October 2009, but the paper was submitted in May 2009. We had a gathering of Scientists to discuss XMRV a while back, and we can only pray that was productive, certainly more productive than people like Dr. Mark Borigini who claimed that CFS patients are
'Terrorists of Health'.
The fact us (expert patients) are having to be leading other patients on their own disease on XMRV is quite unforgiveable, especially as no matter how hard we feel in dark for clues and evidence we are still floundering as much any the next person until reliable scientists show us the next fact . The criteria for HIV being classified as an infectious disease, has already been met for XMRV. We know of proven cases of 'ME/CFS' appearing after blood transfusions, and XMRV is proven by cell culture to be an infectious virus. Yet no announcements have been made.
The clock is ticking, and no amount of 'failed' XMRV research studies can stop the truth coming out, even if these studies that cast doubt on the rate of XMRV infection in CFS are infuriating and help stall more research into the bio-medical causes of CFS - prolonging patient suffering. XMRV is outside the USA, and the world is going to get tested to show this.
Failed studies will simply be a failure of the researcher's testing technology, not the absence of XMRV in patients tested as was shown by the PLOS one Study and will be also be shown by a plethora of forthcoming studies who's authors have an agenda to fit or are innocently unaware that PCR technology (even done at the best lab in the world) is not sensitive enough to detect XMRV. WPI took 3 or 4 goes to sometimes find XMRV by PCR.
If we patients know this, why don't the myopic scientists who declare (before even embarking on research) that their results won't show anything? Of course they know XMRV infects patients with CFS. We (the public) are at least 12 months behind on what scientists really know about XMRV but cannot reveal until they are certain of what they think they have found. CFS is a brand after all. A brand that pulls in billions of dollars world wide from clinics with a psychological bent. To have this practice exposed and quereed is humiliating for the doctors involved and confusing for the patients who attend who thought they were in one camp and are now being politely told to shuffle their bottoms along to another department.
The earth shattering discovery for those who keep the lid on XMRV, is healthy people are carriers. Once healthy people get wind they are infected - they will talk. Healthy people are not aware of CFS politics, never mind intimidated by them. The irony is, the healthy people who scorn CFS patients - will be the people to blow the lid off XMRV when they discover
they are infected too.
Reliable and easily accessible testing for XMRV (that may amount to 4 different tests) ENABLES these people in the community and EXPOSES XRMV infection rates to the public, media and health agencies.
We are pioneers on this forum, but on a desert Island.
Wait 'till the official telegram is sent. Then it all kicks off.... trust me. :victory:
