Showing posts from 2009
Dear Friends,

As some of you know, my health has worsened substantially over the past five years since I acquired a chronic bartonella infection that caused serious cardiac issues, and since I contracted chronic neurological Lyme on top of my already-severe case of ME/CFS and MCS. Just as things were starting to improve on proper meds for bartonella and Lyme, the worst Ice Storm in 30 years hit Massachusetts. Without power, I lost my heating system, well pump, lights, stairlift, and was thrown into a catastrophic state of emergency. I ended up in the hospital for 4 1/2 days. Hospital stays can be lethal for people with chemical sensitivities and ME/CFS. As ME writer Jodi Bassett states, "It is very common for severely affected patients to spend 2 months, 6 months, 12 months or even YEARS or longer recovering from a hospital trip. For example, some patients have not regained their previous very low-level of health 2 or 4 years after a trip to hospital. Some never do recover, a…
Fly Away to XAND-ado, or Where Is Elaine DeFreitas?

The discovery of antibodies to the retrovirus XMRV in the blood of 95 percent of ME/CFS patients has led to an air of celebration best expressed by these 20+ year ME/CFS patients who partied with funny hats that read "I heart retrovirii." It has also led to a new name for the illness: XAND or X-associated neuroimmune disease. But two questions are on everyone's minds: how do we keep the momentum going when the patient community is so frail, and where is Elaine DeFreitas?

First, let me talk about XAND and why it's so exciting.

Retroviruses are rare in the general population, whereas most other viruses found in ME/CFS patients are ubiquitous. Most viruses discovered in ME/CFS patients have been common or fairly common herpesviruses such as CMV, Epstein Barr, HHV-6. A finding of a retrovirus in 95 percent of a patient group argues very strongly for causality.

This is why our ME/CFS luminaries -- including the doctors w…
"First, Do No Pharma"
As Audre Lorde once wrote, the master's tools will never dismantle the master's house. In a complicated world of fast-moving virology, shape-shifting illness branding, and vaccine controversies, it is not always easy to find the master or deconstruct his toolbox. With the recent discovery that 95 percent of ME/CFS patients have antibodies to the retrovirus XMRV, the first master is obvious: the Centers for Disease Control. The CDC, as Hillary Johnson recounted in Osler's Web, swept aside (and distorted) the evidence of a retrovirus in ME/CFS patients that was discovered by Elaine DeFreitas in 1991. So ME/CFS patients are waiting for the CDC's counter-attack on this new XMRV science, which has been all-but-prophesied by CDC's CFS program director William Reeves' statements to the press. As he stated in the New York Timeson the XMRV discovery, "If we validate it, great. My expectation is that we will not.”
ME/CFS and the Retroviral Elephant

In the ME/CFS community, since yesterday, there has been a swell of jubilation. This may seem odd to a lot of people considering that researchers just found something in our blood similar to HIV. None of us are shocked by this news because we've always known we had something like HIV, something serious and deadly, but we have had to face a surreal social gaslighting while simultaneously weathering the horror of a terrible, life-destroying illness. Dr. Mark Loveless once said that an ME/CFS patient feels every day significantly the same as an AIDS patient feels two months before death. Now that statement holds more weight: ME is to AIDS what vegetative is to death.

The discovery of a new retrovirus called XMRV in ME patients is the biggest news in the history of the ME epidemic (and yes, I'm fully claiming the term ME now, as all "CFS" patients can do, now that as Hilary Johnson says "Our Vietnam War Ended Today" and we…