Thursday, March 17, 2011

Retrovirus or no retrovirus, why is no one covering the full story?

Mary Schweitzer said:

We have known for years about biomarkers, immune defects, and viruses – but the press showed no interest until a retrovirus showed up.

CDC has a paragraph listing many of these as not individually "proving" that anyone had CFS, and therefore they should not be tested for them. But surely it is significant that those of us able to get testing share many of these pathogens and biomarkers. Surely it is significant to have not one, but many.

I tested positive for the 37kDa Rnase-L abnormality and HHV-6 Variant A 12 years ago. I respond well to an immune modulator, and my biomarkers disappear, but it is experimental and I cannot always get it.

When sick and in relapse, I am mainly bedridden. Cannot read a newspaper. Have a great deal of difficulty taking down a phone number. Can't pass a Romberg test. Have blackouts, ataxia, expressive dysphasia, massive confusion. And constant pain behind my eyes and in the back of my neck. Plus headaches and muscle pain.

In my last relapse, I tested positive for the Rnase-L defect and had a natural killer cell function of 2%. I was active for EBV, HHV-6 Variant A, HHV-7, cytomegalovirus, and Coxsackie B. Some of these viruses were in my spinal fluid. I had abnormal SPECT scans and VO2 MAX scores. I share some combination of these diagnosable abmormalities with other cluster outbreak patients.

Why isn't that news?

At least one million Americans have my disease. 850,000 have no diagnosis. Many are deeply impoverished by the disease. It is obviously contagious at some point in it's course.

And people die from this disease.

Why isn't that news?

The media has made XMRV the story. We are all fearful that if the retrovirus disappears, so will the coverage. But we will still be sick. The vast majority will not be diagnosed. The vast majority will receive no treatment. The vast majority will remain impoverished.

I am sure we must sound desperate to outsiders. We sound desperate because we are desperate. WE know there is something really bad, contagious, impacting one million Americans out there.

Retrovirus or no retrovirus, why is no one covering the full story?

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