The Cheney Clinic

Changing status of XMRV / HGRV research

Paul Cheney — Sun, 04 Dec 2011 23:04:57 +0000

There is still no consensus in either direction for the existence or non-existence of XMRV associated with CFS cases. Studies out of Europe (Belgium and Germany) and the US (Cornell) as well as elsewhere which are separate from WPI, FDA and NCI are demonstrating evidence that cannot be due to a mouse contaminant for XMRV association with CFS. The strongest supportive study to date was reported by Dr. David Strayer out of Hemispherex Inc, (Philadephia, PA) at IACFS/ME in Ottawa and showed that 7/8 CFS cases and 2/17 controls were positive for XMRV using Next Generation Sequencing (NGS) technology available at Roche Labs in Germany. NGS is not susceptible to mouse contamination and demonstrates that XMRV is in fact integrated into human DNA which means it is a human virus. The Science (Lombardi et al, 2009) study still stands as the best evidence that this virus is transmissible from cell to cell and the studies out of WPI and Belgium demonstrate an immune response (antibodies) to XMRV and a cytokine profile (WPI) that suggests it is pathologic.

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. This preliminary report out of Germany using NGS as well as human immune response data supports the association of XMRV with CFS, despite the flaws exposed in the current primary PCR technology used to define this scientific debate which appears very messy and excessively bio-political to date.

GcMAF studies presented at IACFS/ME meetings in Ottawa

Paul Cheney — Sun, 04 Dec 2011 21:37:46 +0000

At he IACFS/ME meetings in Ottawa, Canada in September, 2011, three studies on GcMAF therapy in CFS cases were presented by Kenny DeMeirleir MD, PhD out of Belgium and by Paul R. Cheney MD, PhD out of NC. GcMAF is a partially deglycosylated vitamin-D binding protein also know as Gc protein. The functional change in the Gc protein caused by serial deglycosylation is known as GcMAF or Gc Macrophage Activating Factor. GcMAF is made naturely in the body under certain conditions of immune activation but can also be made outside the body by chemical or laboratory means and by the use of certain probiotics in a Yogurt-like mixture in your own kitchen. GcMAF is extremely potent and will at very low concentrations activate, regulate and expand macrophages which are the central processing unit of the immune system and capable of modulating and controling both the innate and cognate immune systems.

Three GcMAF studies presented in Ottawa showed improvement in CFS symptoms using a similar patient-centered assessment instrument. Dr. DeMeirleir, using an injectable (IV or SQ) chemically derived GcMAF given at 100 ng on a weekly basis, showed at 63% response rate (68/108) over 5-40 weeks of therapy. Dr. Cheney used a similarly manufactured chemical GcMAF in 19 patients treated at 100 ng every 5 days over 8 weeks by SL route but he also used, in a separate study, a novel probiotic-based GcMAF given by oral daily route (MAF 314) developed by Prof’s Ruggiero and Pacini out of Florence, Italy. The SL chemical GcMAF demonstrated a response rate of 79% (15/19) over at least 8 weeks while the probiotic-based oral GcMAF (MAF 314) demonstrated a 76% (16/21) response rate over only 28 days. Given the lower numbers and shorter time frames in Dr. Cheney’s two studies, there was likely no significant difference between the three studies in terms of overall response rate in CFS patients. However, there appeared to be differences in the chemical GcMAF response rate that depended on the patient’s vitamin-D VDR polymorphisms that was not seen in the probiotic GcMAF (MAF 314) and positive response rates were generally seen much quicker in the probiotic GcMAF (MAF 314). There were mild to moderate side effects seen in all three studies and generally responded to dose reduction as well as other measures. GcMAF, given by a number of different routes, appears to be an effective therapy for well defined CFS patients.

Review of stem cell therapy results as of September 2010 – a public announcement

Paul Cheney — Sat, 18 Sep 2010 21:34:48 +0000

We are now almost 20 months out from the treatment with afterbirth derived stem cells of almost 25 CFS patients with 18 patients now out at least a year. There has clearly been dramatic success, especially in those under 35 years of age but a clearer picture is now emerging. Any success for those over sixty has been meager at best except perhaps briefly. More importantly, all stem cell responders which has been the great majority to date, are subject to varying degrees of regression, especially if they did not commit to our best anti-viral regime supported by all that we bring to bear in terms of broader CFS therapeutic support and recommended lifestyle changes in this practice. The majority of regressions are fortunately not back to baseline and most are holding above baseline and some are holding well above baseline. We have several ideas going forward and this important Newsletter post explores many of them though available only to Cheney Clinic patients.

A second publication links CFS even closer to a novel family of retroviruses – What do we call them?

Paul Cheney — Tue, 31 Aug 2010 13:06:58 +0000

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.

Stem cell results as of April 2010

Paul Cheney — Mon, 26 Apr 2010 01:11:15 +0000

We are now close to 20 CFS patients who have received stem cell transfusions primarily in Panama at SCI and coming up on 8 with 12-18 months of follow-up in June. We have three functional cures (KPS of 75-80) both clinically and by ETM, all under 36 years of age (N=3). A KPS of 75 means they can work full time with accommodation and 80 means they can work full time without accommodation in their job of choice. All three started at KPS’s of 50(2) to 60(1). Two of these functional cures have been sick for almost 20 years, one for 8 years, two are male and one is female.