Newly Nerfed

This blog will return when my motivation does.

Until then, I’m posting at Dispatches From Exile.

Thanks, everyone.

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Posted in Blog stuff

(Reposted from my Tumblr.)

Two years ago, researcher Judy Mikovits was riding high atop a wave of promise.

She had published one of the most discussed papers of the year in one of the most prestigious scientific publications in the world.

Her team’s findings were hailed as a potential breakthrough for an illness — chronic fatigue syndrome — that had long frustrated researchers. She was invited to speak at scientific conferences around the globe. Adoring patients crowded her at her talks.

Now, in a stunning twist, Mikovits is sitting in a California jail cell, held without bond, awaiting an arraignment hearing Tuesday. An arrest warrant issued by University of Nevada at Reno police lists two felony charges: possession of stolen property and conspiracy.

She was fired in September, and this month her former employer filed a lawsuit alleging she had wrongfully taken lab notebooks, a computer and other proprietary data. Other researchers have discredited her work, and the journal Science, which published her study, is investigating whether the data were manipulated.

The only constant is the patients who continue to rally around her.

“Remember that we are behind you every step of the way, even whilst you sit alone in jail wondering what will come next,” one person wrote on a blog called OslersWeb.

(source: Trine Tsouderos, Chicago Tribune)

Well, what in the seven hells is this now? Could this scientific soap opera get any more bizarre? Never mind, forget I asked.

“The only constant….” Yes, the only constant there will ever be are the patients who have completely abandoned critical thinking in favor of hero worship. These are the exact same types who continue to lionize Andrew Wakefield despite his incompetence, fraud, and penchant for giving colonoscopies and spinal taps to children without consent or approval. No matter whether Mikovits is found to have committed two federal crimes, or defrauded the entire ME/CFS community, these patients will be “behind [her] every step of the way.”

I’m pretty sure if Mikovits killed an ME/CFS patient with an XMRV-infected mouse, in front of two CCTV cameras and a network TV crew, this particular subset of the community would claim she’d been framed. Why am I not writing as much about ME/CFS anymore? Because these very people have completely worn me out with their ridiculous bullshit. I loathe having to be associated with them and I’m no longer going to sugarcoat it.

Happily, science has moved on to many more interesting research angles. What are these die-hards going to do when a cure or treatment comes from, say, gene research and not XMRV, I wonder? Admit they were wrong? I eagerly await that day for a number of reasons.

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Posted in Health, ME/CFS, science, skepticism

Tagged Andrew Wakefield, CFS, chronic fatigue syndrome, felony, fraud, Judy Mikovits, me/cfs, myalgic encephalomyelitis, soap opera, WPI, xmrv

We bought me a wheelchair this week. The reasons are entirely practical and it doesn’t mean I’ve gotten worse. When we go to Disneyland, we won’t have to worry about whether rentals are available, for one thing.

Yesterday Paul and I went to the Tim Burton exhibit at LACMA. Without a doubt the chair saved my energy pool from going really seriously overdrawn. Of course there were issues I hadn’t banked on, mainly art and signage I had to crane or twist my neck to look at.

There’s other, less tangible things I have to figure out. The loss of agency when I get into a chair that someone else is pushing is really jarring. I asked my husband to let me do the “excuse me, coming through” thing even when he was pushing, since it felt so weird sitting there passively while he did all the work. Which is the whole point of getting the wheelchair in the first place, to save me energy, so I need to get used to it.

It felt more normal to wheel myself when we were going our own ways in the exhibit, but you know what’s more nerve-wracking than getting used to controlling a wheelchair? Doing it around a zillion people and extremely expensive works of art. Good thing I usually like a little trial by fire. I’m happy to report I don’t owe LACMA any money, nor medical expenses for any other patrons. Next up: wheelies.

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Posted in Disability, ME/CFS

Tagged agency, disability, Disneyland, LACMA, me/cfs, mobility, mobility aids, Tim Burton, wheelchair