Tag Archives: chronic illness

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: Stuck in the sand

Hey look, it’s a new post! That must mean WordPress has behaved for 10 whole minutes in a row. I could believe in miracles.

The blog is still under construction; bugs abound, there’s some typographical stuff I need to hunt down and fix, and I’m also not 100% on the new layout yet. What do you think?

I’m a bit more of a spectator than a participant these days. I’m happy to say there’s been progress on my pet project that I’m very excited about. But as far as other work and projects, I’m in something of a holding pattern. The past couple of months of doctor visits, diagnostic tests, and a roller-coaster of hope for a new and definitive diagnosis has actually left me two steps back, with my CFS doc now convinced I have more of a “CFS Plus,” based on my inexplicable bout of optic neuritis and some other problems that don’t quite fit the profile.

So I’m left with worsening symptoms and even less idea of what’s really wrong with me. Normally I get past these kinds of setbacks relatively quickly, but it’s been tougher this time. Chronic illness is a constantly fluid situation; it’s kind of like standing on a seesaw that someone else is moving up and down, and you learn to adapt to the wobbling, even if you’re caught off balance from time to time. Right now I feel like I got thrown off the seesaw and landed face-first in the sandbox. It’s just sand, so I’ll make it out, but it’s kind of deep, so it might take a while.

In other health news, Paul and I both got our TDaP boosters today. In case you didn’t know, there is a serious outbreak of whooping cough (pertussis) in California right now, from which nine infants have died so far. These babies were too young to be vaccinated, so they were most likely infected by a well-meaning adult with no idea he or she was a carrier. This is scary to me because I consider myself pretty well educated as a layperson when it comes to vaccines, and I had no idea until this year that adults need not just tetanus boosters, but the whole tetanus/diphtheria/pertussis combo. We can’t just write this off to the antivaxxers; this is a serious failing in patient education, to my mind.

But at least Paul and I can now go visit our friends’ adorable new babies, safe in the knowledge that we’re as medically protected as possible from causing them  harm, and that we’ve done our part for herd immunity. On that note I’d like to send you off with this great song about vaccines and how they’ve made life better for us.

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Weekend sendoff: I’m too lucky

Because for the most part I’m surrounded, online and off, by people who are accepting and understanding of what’s happened to me, whether or not they even knew me before I got nerfed. And for the most part the silly or ignorant things that are said to me come from well-meaning people who are trying to be kind or polite. So it can be easy for me sometimes to forget that malicious prejudice against invisible illness really exists.

I thought this Skepticblog post by Steven Novella about a controversial treatment for MS was very interesting. For one thing, it reminded me of CFS “specialists” such as electrical engineer Trevor Marshall, who somehow manage to be the only person to discover a miracle treatment. In the case of chronic cerebrospinal venous insufficiency (CCSVI) in MS patients, the specialist is at least a physician, but that doesn’t necessarily make his setup any more legitimate.

I feel empathy for MS patients who are anxious to learn about a potential new treatment or even cure, but I also feel a sense of recognition with the potentially (or likely, according to Novella) premature clamor for this treatment. It’s very similar to the CFS patients who are getting themselves tested for XMRV — a test that is still not covered by insurance, but is in at least one case administered by a lab with connections to the institute that did the original study — or even treated with antiretroviral medication.

The part where I’m lucky comes in where I commented briefly as much on the post, which was met by two ugly responses by someone who can generously be called a troll. Yes, I do recognize that behavior, which according to the rules of the Internet mean I shouldn’t be upset by it. And I should deplore the outpouring of scathing responses as “feeding the troll” rather than taking delight and satisfaction in them. Yes, I was being a thin-skinned noob.

But what bothers me isn’t this particular person, really. It’s the general reminder of how people with chronic and mostly invisible illnesses are actually viewed in many cases. “There’s no evidence,” the troll snarked, because mostly we don’t look sick. As stupid as that sounds, and as obviously as this doucheturkey just wanted to garner attention, it is the reality for many patients much less fortunate than I am. When you hear of someone with CFS saying she wished she had cancer instead, it may sound shocking, but I can’t say I blame her.

Now that I’ve bummed you all out, I’ll send you off with what may be the best video ever. EVER. Paul sent this to me a couple of days ago and I cannot stop watching it. EVER. Prepare to die of cute, and then have a great weekend.

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