Category Archives: Health

Judy Mikovits in jail.

(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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Going to the chair

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.

Wheelchair

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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What time is it, kids?

It’s “whack a quack” time!

There’s a particularly time-intensive form of blog spam that I’ve started getting emails about. It’s the one where someone oh so generously offers to write a guest post for your blog! Wow, what a relief to have a post I didn’t have to write. It will be of the highest quality, of course, and include many amazing, game-changing treatments for ME/CFS. It’s almost like a charity act, if you think about it.

The thing about this one is the spammer is forced to provide a working email, so that when you accept their once-in-a-lifetime offer, you can contact them. And I always do, and I don’t think I have to tell you what I say. And they never write back.

Until now.

Here is the unedited text of an email I received today:

hi,

i have an [sic] fatigue site and i would love to write a guest article for you on treatments that i have found to help symptoms like insomnia, brain fog, etc.

I’ll write a 700+ word article that is great quality + i’ll do unlimited revisions until you’re happy [sic]

my site is chronicfatiguetreatments.com

Let me know if you’re interested and i’ll send you an article.

First of all, based on this email, I’m not quite convinced of the amazing quality of this proposed article. Second, note that ME/CFS or even just CFS is never mentioned. Just “chronic fatigue.”

I replied to this email in not the most polite and cordial manner. No, I didn’t check the site, as a good skeptic would have, but good skeptics also have this thing called “experience” where sometimes you just don’t need to expend the energy on research. I made it very clear that if I were contacted again, I would write my own post about this little exchange.

And he contacted me again. Which I take as a tacit acceptance of my terms.

Let’s play a game. Don’t check out that site just yet. First I’ll quote the response, then we can see if I was right in the first place. Emphasis is mine.

what are you talking about? i’ve been sick for 11 years and I made a website about it in 2006. I don’t care about the name “chronic fatigue”, because no one knows what the cause of it is anyways. When they find out, they will just end up changing the name, so the name really is not important to me at all.

Way to jump to conclusions, based on no facts. Sorry to bother you, Im [sic] sure you’ve got a game of WOW to get back to [sic]

1. Quacks and their shills always claim to be ill or have recovered from their illness.
2. The name is one of the largest controversies among patients and researchers.
3. There is new and exciting research on both terminology and etiology (see link in 2).

So here we have someone touting remedies for an illness that doesn’t exist (remember, chronic fatigue is a symptom not a diagnosis), who is completely tone-deaf to the needs of the patient community, not to mention the current state of research. Do you want this person recommending treatments to you?

Now let’s check the site, which of course I did in case my quackdar was off and an apology was warranted. Please, in all sincerity, if the site doesn’t immediately set off every quackery and snake oil alarm you have, please ask. I don’t see the need to go through right now it but if necessary, I would be happy to elaborate. What I most hope is that my fellow patients and other spoonies don’t fall prey to this clumsy and elaborate deceit.

So, granted, I did indeed jump to conclusions based on very little info. But as it turned out, the little info I had was excellent, and the conclusions were completely accurate.

Thank you to my email correspondent for providing the material for this post. And now, if you’ll excuse me, I have a “game of WoW” to get back to.

UPDATE 4:39pm: Respondent has changed his tune to how wonderful and nice he is and how he just doesn’t get it. Respondent also continues to insult me in the same breath, thus rendering his assertions extremely doubtful. Respondent further continues to be oblivious to the fact that I’m not in the least bit embarrassed to be a gamer, but apparently has no fresh ITG (Internet Tough Guy) material.

UPDATE 5:12pm: Spammer turns into concern troll, simultaneously appeals to my vanity by offering to be friends. Email harvesters, fellow patients, do feel free to contact him at jameson111@mail.com. It’s okay; he agreed to have it posted here.

UPDATE 6:02pm: With his next contact, I provide some howlers from the site that show the people who run it are not interested in your health. Again, posted with permission.

Chronic fatigue syndrome is a very misunderstood illness with no known cause. Currently it is defined as “severe fatigue that lasts longer than 6 months, which is not relieved by rest”. Also known as CFS, it is diagnosed only by excluding all other medical issues that can lead to these symptoms.

Is is just me or has nobody been paying any attention to recent research (or heck, just reading The Wall Street Journal or the Chicago Tribune)? This is hopelessly outdated to the point where it’s untrue.

This one just needs to be read in its entirety. Note the “high quality” that I’m guessing would be a hallmark of the proposed guest post.

UPDATE 8/30: I’ve ended my correspondence with this person, but his emails from this morning warrant one last question to you, my friends: Would you prefer your heavy metal chelation up your veins or up your ass?

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