Homographs and Outside Voices
Desperate ME/CFS patients plead sotto voce for a triple cocktail of HIV medications and other antivirals like the desperate women of an earlier time who sought clean, illegal abortions from a sympathetic M.D. What person who learns that they’re HIV positive is relieved? But most patients who learn that they’re XMRV positive are relieved, for it’s validation that their illness is in their bodies and not their minds. That ME/CFS still is not acknowledged as a serious and sometimes fatal physical illness remains for many the worst aspect of having it.
There’s also clinical data to suggest FDA-approved antivirals like Vistide and B-cell depleters like the cancer and rheumatoid-arthritis drug rituximab may also be effective for ME/CFS. There are markers to chart patient’s progress, including an XMRV viral load test, cytokine panels, V02 max (maximum capacity of the body to transport and use oxygen during exercise), IQ testing and actometers, which measure activity level. Desperate patients are experimenting with medications now, but few are monitoring markers, so they’re flying blind.
After the EBV theory fell apart, Straus started blaming patients for the illness. As outlined in Hillary Johnson’s seminal book Osler’s Web, Stephen Straus launched a 1994 ME/CFS workshop with a slide of a Victorian woodcut of a woman recumbent on a couch with her hand clasping her forehead. For Straus and some other government scientists in the U.S., as well as a group of psychiatrists in the U.K., ME/CFS became nothing more than an updated name for the Victorian Vapors.
In 1986, according to Johnson, Straus theorized to fellow physicians: “Maybe these are the individuals who… don’t want to drive their BMW unless they feel up to it, and they need our help to get behind the wheel.” When it came to ME/CFS patients, Straus was misogynistic, cruel and, as he proved in the acyclovir trial, incompetent. That’s who Stephen Straus really was, Dr. Plotz and Dr. Gottesman.
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