I expect that Next Generation Sequencing or NGS, which does not have the flaws of PCR technology in evaluating a poorly understood human virus(es), will be the best way forward to a consensus as to the question of association of CFS with XMRV/HGRV.
There are now two tests for XMRV known as the XAND PCR/culture and XNDS serology tests from VIP Dx (www.vipdx.com) in Reno, NV. You can do both tests together for about $550 or about $700 for both separately. CFS patients need to do both initially but exposure controls or family members might want to only do serology for $250. For CFS cases, there is a non-overlapping chance of being negative on PCR/culture at about 25% or greater and about a 50% chance of being negative on serology but perhaps close to a 80-90% chance in our clinic of being positive if you do both (one or the other positive).
I have recently evaluated the overlapping illnesses often associated with CFS including chronic lyme, mold related illness, FM, MCS, IBS and allergies (both food and inhalants). To do this I used patient report questionnaires to help dissect out the important question of the frequency of these overlapping diagnoses in a CFS-only practice. Questionnaires lack some of the diagnostic precision of more detailed case definitions but the inherent biases already built into a CFS-only specialty practice would exist despite any improvement gained by using more accurate case definition discriminators such as exam and laboratory data, if they exist at all.
I have reviewed the recently returned serology data from VIP Dx. Of the 22 CFS patients returned with serology results to date, 2 out of 3 or 67% were reported positive who previously had been negative by PCR/culture. 8 were from the 12 reported as negative by PCR/culture using the LNCaP permissive cell line in the 47 consecutive Cheney Clinic case study done in late 2009. Of the eight, four were seropositive and four were seronegative. An additional four are either not returned as yet or a request for repeat was made (indeterminate). On the four reported as seronegative, one is part of a multi-member family in which all except this patient who is also the sickest are XMRV PCR/culture positive. One of the indeterminantes is also in this multi-member XMRV positive family category.
Can the naturally occurring glycoprotein known as GcMAF be the best available treatment for XMRV/MLV infection?
GcMAF is a naturally occurring yet potent activator of the immune system antigen processing cells known as Macrophages. This post discusses the nature of GcMAF including how it is derived and its potential utility in treating both cancer and retroviral infections. Studies in Europe are being completed which demonstrate the effectiveness of GcMAF in CFS patients and soon to be published.
In my opinion, these drugs must be used only in well designed studies and the sooner the better because many patients and their doctors are being persuaded to try them as they read the anecdotes on web blogs of CFS patients using RT inhibitors and integrase inhibitors. Anecdotal self-reports are very suspect in CFS due to spontaneous improvements and the longer term problems which are sure to come will not be evident for years. Some problems may also be sudden and dramatic, especially heart problems linked to ischemia.
Presented at the 1st International XMRV conference held at the NIH in early September 2010 was an extraordinary study by a group connected to Abbott Labs that infected male and female macaques which are monkeys closely related to man with human XMRV to see what happens over time and where the virus ends up or concentrates itself.
Dr. Cheney’s poster presentation at an XMRV conference held at the NIH is reviewed by YouTube – are there misrepresentations?
A poster presentation by Dr. Cheney made at the 1st International XMRV meetings held at the NIH in early September, 2010 was partially summarized by a U-tube video (see http://www.youtube.com/watch?v=S3UwkdzBaro). While the video was in many respects very well done and brings needed attention to CFS and its link to XMRV, there are key misrepresentations made about the poster and what it actually said or implied. This post discusses in detail the good points and bad points of this U-tube presentation which Dr. Cheney knew nothing about and had no hand in it.
What is the role of GRV (previously called XMRV) in chronic lyme – Can chronic lyme exist without GRV?
From the point of view of my CFS-biased practice, chronic lyme does not exist independent of GRV infection but my practice cohort is heavily biased towards GRV and therefore is not well positioned to prove that chronic lyme can exist without GRV.
A second publication links CFS even closer to a novel family of retroviruses – What do we call them?
On the 23rd of August 2010, a PNAS on-line publication (Lo et al) was published out of the NIH and the FDA confirming Judy Mikovits’ October 2009 Science papers’ assertion that a Mouse Leukemia Virus (MLV)-related retrovirus (RV) is strongly linked to CFS. With an 87% association of this novel RV with CFS, the new study makes the association much tighter with CFS and ever closer to a possible causation claim as we are still using first generation testing and the biology of these RV agents is still poorly understood. The MLV-related human RV reservoir is still unknown and there appears to be only low copy numbers in blood making detection difficult and very methodology dependent. Given that the CFS-related strain reported in PNAS is not related to XMRV, a mouse virus, but rather to another mouse virus (PMRV) from the same family of mouse viruses suggests that a name change is in order to describe this family of novel “human” retroviruses. We propose the name Human Gammaretovirus or GRV’s for short with some agreement from my colleagues around the world.