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.

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.

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.

• XMRV: Examination of Viral Kinetics, Tissue Tropism, and Serological Markers of Infection - The study abstract.
• XMRV Infection in Primates - Dr. Paul Cheney's detailed discussion of the study.
• Monkey Business - Political cartoons commenting on the study.
• More Monkeys - More politics.