Tag Archives: CAM

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: Preaching to the choir

My optimism about this blog waxes and wanes. Not my enthusiasm — I love working on it and have no intention of stopping. But like most skeptical bloggers and writers, I often wonder if I’m not just preaching to the converted here. I’ve known chronically ill skeptics who would not have been taken in by the quackery I discussed in my last post. And I’ve known chronically ill people who are 100% dedicated to alt-med, no matter how questionable.

Is there anyone left in the middle? Everything these days, from American politics to medical issues that have been needlessly politicized, seems to have polar opposites but no middle ground. I assume there is actually a middle, but I don’t know what they’re doing. Are they reading my blog and filing it away for future reference? Are they returning to the comfort of forums where all treatments are considered equal? When I write a post like Tuesday’s, which is obviously not aimed at people experienced with skeptical inquiry who don’t need the primer, I do try to publicize it on chronic illness forums and other places where I hope these “medical centrists” may exist. But I have no idea if it’s working.

I did see a thread belittling homeopathy on a forum where I once saw a thread cancelling any discussion of it, so that gladdened my tiny, mean little skeptical heart. I’m not claiming any credit; it was just nice to see.

In other news, although my fundraising efforts for the CFIDS Association must be considered a colossal failure, happily two wonderful gentlemen were kind enough to donate, and as such have earned the right for me to compose a (probably bad) sonnet about them. Derek Bartholomaus, of the Jenny McCarthy Body Count, and @Data_Jack — don’t think I’ve forgotten about you!

I send you off with an allegory for what I’d like to see happen: chronically ill skeptics and believers in CAM, natural enemies, coming together for a productive discussion. (Cuddles are optional.)

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My pet CAM

Recently, a new study showed the inefficacy of gingko biloba as a treatment for mental decline related to aging. Since my mother uses this, I was interested in this news, and posted a link on Twitter to Science-Based Medicine’s article on the subject. I received a very surprising response from another chronically ill person who self-describes as a skeptic, and who I considered to be a critical thinker. This response included an explosion of offense at this story, ad hominem attacks on both the site and Dr. Novella, and when I tried to remove myself from the onslaught, emotional leaps to conclusions that I was mocking or disrespecting this person because I declined to continue the “conversation.”

I’ve written before — and I will certainly write again — about the particular vulnerability of chronically ill people when it comes to considering complementary and alternative medicine (CAM). It’s why quacks target us, and why they are so often successful. As you know, I’m a strong advocate for people with long-term illnesses hanging on to their critical thinking skills, as hard as that is through the daily fatigue, pain, and sickness.

Many of us, however, do have blind spots in our critical thinking. We rely on certain treatments that may not be proven to the complete satisfaction of the medical community — and we don’t care, because they work for us. As I’ve said in the past, with the exception of homeopathy to which I will not give a pass, as long as the treatment causes no harm and the patient is informed and not going broke, then I’m not sure it’s my place to argue with what may work for someone. For one thing, I have a pet CAM of my own, and I am more than willing to admit my strict rules about this stuff break down a bit when it comes to this treatment. It’s another story for another day, but my point is that everything I say in this post applies to me as well. By no means am I trying to imply I’m above all this; I struggle with it constantly.

If you are going to invest financially and emotionally in a treatment that doesn’t have the support of the medical community, you also have to be self-aware. You must realize that there is an irrational component to your attachment, and you have to compartmentalize it. There are certain medical blogs where I simply won’t read stories about my own pet CAM, because I know I’m likely to get annoyed. Why? They are science-based and the science isn’t all there yet, and there is also a certain bias against this treatment in some circles. I realize that if I’m trying to research this subject thoroughly, I should also look elsewhere for other points of view.

But what I don’t do is then fault the people running these blogs because they don’t agree with me. I can’t help but find it the height of arrogance to label doctors with years of clinical and/or research experience, who are dedicated to the scientific investigation of medical claims, “stupid” because they focus on the science. I may disagree, but that doesn’t make their work invalid. My experience as a chronically ill, critically thinking layperson includes an enormous amount of personal data as well as anecdotes from many people (including my own GP) about the efficacy of my treatment. That does not change the fact that in science, anecdotes do not equal data. Just because you are firmly convinced, and even if you came to your decision through an analytical pathway, your personal experience does not change the way traditional medical science works.

If you think a legitimate study on your pet CAM is utter crap, fine. But don’t be shocked when evidence-based sites don’t support your assertions. Science-based medicine is that, and it has a right and responsibility to reject treatments that have not yet been vetted. Avoid places that you know aren’t going to support it, if you are too emotionally invested to read valid criticism, rather than trashing the science-based sites for being, you know, science-based. Or even better, bring your knowledge to those sites and join the discussion, if you are able. Looking back at that SBM article, I’m interested to note that the person I mentioned did not do so, but rather took anger and frustration out on me, the messenger. I can assure you this is not productive, except to provide me with blog fodder.

(Image from Science!)

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