Wednesday, October 20, 2010


"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."
"When the healthy reprove the sick that they're impatient and reckless and foolish and need to wait for treatment, I say isn't it funny how healthy naysayers get to enjoy their lives while admonishing the sick to be grateful that life is not any worse.  It is sickening.  It's also a way for the fit to distance themselves from those who are suffering."
"The gay reporters and activists in Outrage implemented a strategic shift in their way of thinking once gay men started dying from AIDS.  Instead of the hounds chasing the foxes, the foxes turned the tables and started hunting the hounds. This switcheroo has, finally, begun in the ME/CFS community"
* * *
This past week we have seen some subtle paradigm shifts.  Baby steps, but, nonetheless, steps in the right direction.
Kim from may say she empathizes, but she doesn't live with the disease herself.  She can afford to wait for clinical trials.  We can't.  By patients themselves taking control of the situation, with ActUp style protests, we're having an effect.  Meanwhile, leaving Kim to sound like the reasonable voice of conciliation.  There's actually room for both tactics.
As one of our male patients and I have discussed periodically, if he comes off the exam table swinging at the doctor, it's a good sign -- shows he's feisty enough to want to fight this disease.  If I did the same thing, it would result in one more phony psych diagnosis being placed in my file, "hates men".
Having this disease has taught me a great deal about patience, but enough is enough.  It's time to act, and it's time to act out.  After 25 years of patience in waiting for someone to find the cause, we have XMRV (or HMRV or HGRV or whatever they're calling it this week), and now that we have the proof that we're not just crazy, it's time to use that proof to beat the Powers That Be about the head and shoulders until they fast-track clinical trials and treatments.

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