Tag Archives: quackery

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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Weekend sendoff: But phytoplankton are awesome!

Yesterday, while I was in the middle of calling various doctors and juggling appointments around, I got cold-called by a medical scam telemarketer. The timing was pretty great, but unfortunately I wasn’t able to take as much advantage of the opportunity as I wanted.

The caller was advocating marine phytoplankton as, first and foremost, a cure for cancer, followed by a list including, and I quote, “high cholesterol, blood pressure problems, thyroid problems, arthritis, migraines, allergies…the list goes on and on.”

Yes, I’m sure it does. I would love to have had a nice conversation with the lady on the phone, but she clearly had zero idea what she was talking about. She kept to a script, and when I asked questions to clarify — even “what did you just say?” — she appeared incapable of deviating even to repeat herself. The spiel included an offer for a free sample, which I was very tempted to accept, but there was no way I was giving those people my address. So, on the off-chance the calls are monitored in some way, I just calmly explained that the product she was selling is a scam, that there is no such panacea, please remove me from your call list, and so forth. I’m sure it didn’t slow her or any of the other telemarketers down for a moment.

Then I Googled “marine phytoplankton” and wow, what a depressing result. Phytoplankton are actually quite neato and important little plants, which are at the bottom of the marine food chain, but you wouldn’t know it from my search, which as you can see is a cavalcade of quackery. (If you remove the word “marine,” you get a slightly better list; apparently the snake oil is best identified by that modifier but it still turns up on the front page.) I had no idea.

Look! Diatoms!

I don’t really have a point to all this, other than in addition to being skeezed out as usual by snake-oil salespeople, it makes me sad to see something of such genuine scientific coolness co-opted into just another quack remedy.

TAM was so incredible that the skeptic part of my brain overloaded and burnt out. Until it’s recovered I’ll be posting thoughts on the other areas of the blog, like videogames. (I warned you!) I send you off with a little lecture about phytoplankton.

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Weekend sendoff: But You Don’t Look Spammy

I’ve alluded previously to the resistance of chronic illness forums and communities to thinking skeptically or critically about treatments and medications. In the past I haven’t named any of them, because it’s not necessarily the fault of the forum posters who get positive benefits from those forums; often it’s the moderators.

I wrote my post about recognizing a quack and then decided to go back to butyoudontlooksick.com, the forum to which I was referring in my earlier post. Although I left that community for the reasons I’ve explained, my genuine desire to share what I think is a vital skill for chronically ill and disabled people got the better of me, and I started a thread including my post. The thread got some interesting  responses and I was looking forward to continuing the discussion.

Then it got locked “due to spam,” and when I privately contacted the appropriate moderator for clarification, I was ignored. Let me be clear that the rest of what I’m about to say is not directed at the forum posters and their positive contributions.

I’ve been thinking a lot about my topic of “Compassionate Skepticism,” which I proposed as a TAM paper and will be writing about more in a week or so. It’s about how skeptics can hopefully shift some of their assumptions and presumptions when dealing with people who have constant, chronic physical pain and cognitive dysfunction.

But you know what? Skeptics need to be met halfway. And this behavior is just half-assed. This is exactly why many skeptics simply write off those people as stupid. I don’t believe that to be true, but I can’t say I find this action particularly bright. To me it simply backs up my previous assertion that the moderators foster a warm ‘n’ fuzzy closed circle that excludes the controversial, even if that information could save someone’s life. As mentioned in my older post, previously that “controversy” was someone posting an article reporting the plain facts of a girl who died from eczema because her homeopath father wouldn’t treat her with conventional medicine. And now my attempt to encourage sick people to think critically is labelled spam, without even a word of explanation to me.

The last thing I wrote here was wondering whether I’m just preaching to the converted. Certainly getting called a spammer in return for reaching out in a friendly way to the possibly unconverted doesn’t improve my optimism on that score. I am really glad that at least a couple of people seemed to find the blog post beneficial. Obviously I’m not going to shut up here, or elsewhere. But I truly am done with that site altogether at this point. Management’s motto seems to be “Let’s pat each other on the head but never ever use that head.” And my apologies to all the forum members to whom none of this applies…but I can’t stomach it.

UPDATE: The thread has now been unlocked.

In other, much happier news, I am now a staff writer for AbleGamers. This is a website of the AbleGamers Foundation, whose mission is “to empower the disabled population to enjoy the digital revolution that is taking place in gaming.” The very first time I read those words, only a couple of months ago, I immediately knew I wanted to be involved somehow. You can read and/or listen to a great NPR interview to learn more, and you can also read my first story for the site. It’s not an easy road for them, as developers are far more interested in creating the next technological blockbuster than in adapting that blockbuster for a marginalized population. But as part of that population, I share the foundation’s optimism that positive changes can and will come.

That, by the way, accounts for this week’s missing blog post. In other news, last week Paul and I fostered a kitty and never let it be said I missed an opportunity to post cat photos. I won’t go into the circumstances as they’re kind of depressing and a lot of you already know about it anyway, but in the end we were able to save the life of an elder but wonderful cat, and transport her to another safe and loving foster home. If you should know anyone accessible to San Diego who might wish to provide a calm forever home for this lovely lady, please contact me. I send you off with Wynne (renamed by us, obviously):

Fourteen years old and so beautiful.

Like all Burmese, she loves exploring...

...and affection.

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