Monday, June 13, 2011

Failed XMRV "Replication" Studies

Several studies have been published in recent months in which scientists were unable to find XMRV in patients diagnosed with ME/CFS. Authors of these studies and others have claimed that these results discredit the seminal XMRV study by Lombardi/Mikovits of the Whittemore Peterson Institute and contend that Mikovits' results must have been due to laboratory contamination.

As a result of these studies, Science magazine published an Editorial Expression of Concern, which casts doubt on the Lombardi/Mikovits XMRV study which Science themselves published in October 2009. Here are responses from the WPI:

Dr. Judy Mikovits
Annette Whittemore
WPI Clinical Advisory Board

Below is a comparison of the parameters, tests, and methodologies used in the failed studies, the Lombardi/Mikovits study and the Alter/Lo study, which found an association between ME/CFS and MLV's (Murine Leukemia Viruses).

A Comparison of Methods for the Detection and Association of XMRV in Chronic Fatigue Syndrome

None of the failed studies came anywhere close to replicating the work of Lombardi/Mikovits and Alter/Lo. Saying these studies disprove anything is like saying that just because my paper airplane can't fly across the street, humans can't possibly have made it into space.

XMRV/ME/CFS and Inflammation

Two studies regarding inflammation in people with ME/CFS have been published recently.

The Whittemere Peterson Institute published Xenotropic Murine Leukemia Virus-related Virus-associated Chronic Fatigue Syndrome Reveals a Distinct Inflammatory Signature, which reveals a distinct cytokine and chemokine signature in people with XMRV-associated CFS and suggests a possible diagnostic procedure for the disease. (Thanks to Dr. Jamie Deckoff-Jones for publishing a link to this study in her blog.)

Also, a study, Exercise Challenge Reveals Potential CFS Biomarkers, explores biological responses to mild exercise in people with CFS. This study, by a University of Utah group affiliated with the CFIDS Association of America, supports the personal observations of many of us with ME/CFS who find that even very mild exertion can cause a significant relapse and/or severe exacerbation of symptoms.

The study also found that the use of anticonvulsants can have a beneficial effect, reducing this post-exertional relapse.

Friday, February 25, 2011

Dr. Deckoff and the new WPI clinic

Dr. Jamie Deckoff-Jones is now working for the Whittemore Peterson Institute, hiring staff for their new clinic, which will be treating neuro-immune diseases, including CFS/ME, Lyme, and autism - and feeding what they learn back to the WPI's research center.

Monday, January 10, 2011

The Human Cost

Millions of people suffer from the ghastly disease known as "Chronic Fatigue Syndrome." Some can still function, with limitations, but for others life has been reduced to a dreary, pain-filled hell unimaginable to those who are not touched by the disease.

One woman has to be taken to the bathroom in a wheelchair. Another, having developed a brutal sensitivity to light, must navigate her home by touch, lights out, windows sealed against the faintest ray from the sun. Yet another spent the best part of a year living on her bathroom floor, unable to crawl back to her bed.

While the government agencies who are supposed to be helping these people continue to dance away from their responsibilities, thousands live with equally devastating horrors. Some are homebound, others bedbound; some are unable to read, others unable to speak; many require round the clock care. Yet these people - isolated, in agony, lives in ruins - still cling to hope.

For the most part, because they are too ill to participate in life in any meaningful way, these people are invisible.

Here are some of their stories.

Saturday, January 8, 2011

XMRV treatment in 2011?

In an interview with Nevada Newsmakers on December 22, 2010, Dr. Judy Mikovits says that "This is really a great time of hope ... we are understanding why the virus hurts the immune system ... what's going wrong to make you sick. ... We expect treatments next year." 

This is right at the end of the video, starting at about 12:15.

Update:  In December, at the International Science Symposium on ME/CFS in Queensland, Austrailia, findings of brain and spinal cord damage and immune system derangement dominated the reports. Promising research into viral infection and exercise intolerance was also discussed.

Jamie Deckoff-Jones on contamination, autism, and an epidemiological disaster

Jamie Deckoff-Jones, MD, is a physician who is XMRV positive and suffers from ME/CFS. She maintains a blog about the disease and her own progress with HIV retroviral treatments.

In her post on December 22, 2010, Returning to Function, Dr. Deckoff responds to the papers released two days earlier showing that mouse DNA contamination can distort PCR test results - and the ludicrous claim that this proves XMRV does not cause CFS. She also discusses a possible relationship between XMRV and autism.

Thursday, January 6, 2011

Macaque monkeys and XMRV

Possibly the most significant CFS-related research published last year was done by a group connected with Emory University, Abbot Labs, and the Cleveland Clinic.

Rhesus macaque monkeys were injected with XMRV, and then their blood and organs were tested to track the progression of the infection.

After a few weeks, XMRV was almost totally gone from the blood. But the infection had spread to many of the organs, including the lungs, spleen, liver, lymphatic system, bronchial passages, gut, and the sex organs.

When the monkeys were later injected with a bolus of  foreign peptides (which mimics an acute infection, an immunization, or an acute mold exposure) there was a huge reactivation of infectious XMRV. Stress and certain hormones also appear to be significant reactivators.

This study is quite consistent with my observations of the behavior of my own illness over the past 16 years. It also sheds new light on several recent studies which failed to find XMRV in the blood of patients with XRMV.

I believe this study should provide new impetus and direction for future XMRV and CFS-related research.