Recently, I was approached on Twitter with this message: “We have to talk, I’ve been told you can use some of the info that I have. – Don’t worry, it’s free.”
Does that pitch sound familiar to anyone else? In this case, the person was telling the truth about having been referred to me (by a friend who, long story short, was not really to blame), but the lies had already begun with the other claim. He further discredited himself by saying he had been to my blog and my Facebook page. The former is, of course, open to anyone, but the latter is inaccessible to anyone but my friends.
Why would you want to oil a snake?
When I called him on this bullshit, that was the last I heard of him, except when he registered on this blog. According to his site, he has multiple sclerosis due to Agent Orange exposure in Vietnam, and for $25 — not my idea of “free” — you can buy his book explaining how heavy metal exposure has caused your chronic illness as well.
Now assuming this guy is actually sick, I recognize in him a kind of freakishly outsized version of what many people go through: the feeling that we need to take control of what’s wrong with us by understanding it. And for some, that means coming to subjective conclusions that are not backed up by any reliable scientific literature. Not so forgivable is the attempt to capitalize on these crackpot theories, especially by preying on sick, vulnerable people. Never mind if you are one yourself; we Jews don’t think so kindly of Bernard Madoff. It’s all the worse if you’re “one of us” while using our enemies’ tactics against us. Luckily, this snake-oil salesman was easy to see coming, starting off as he did by lying to me. Many purveyors are far more subtle, however.
What I want is for those of us in chronic pain and fatigue and illness not to be vulnerable. I was very well taught by an online community of Graves’ disease patients how to read my own lab results, learn about medications, dosages, and tests, and get in the habit of questioning my doctor when things don’t add up. My experience in that community and others related to chronic illness, however, is that while self-education on conventional medical matters is encouraged, similarly close inspection of alternative, experimental, and/or complementary therapies is not touted as strongly.
Again, I empathize, to some extent. I went through a period where I believed it couldn’t hurt to throw everything at the problem and see what stuck. Relief from daily pain and illness is so elusive, and for some people the feeling is that it can’t get any worse, so why not? I did eventually swing back to a more critical way of thinking, after continuing to read about skepticism and learning more about the science behind my own illness. Memories of long-past and ultimately useless sessions in acupuncture and hypnosis only sped up the process.
Tim Farley, in the FAQ for his site What’s the Harm?, writes:
What I am against is people engaging in these practices (particularly for philosophical or religious reasons) without carefully considering risks and otherwise doing proper homework. You should always avail yourself of the best information you can before you make any important decision.
This is where I come down on the subject as well. We nerfed people, and especially the newly nerfed, are at best grieving for our old lives, and at worst still in shock at the loss. And like the bereaved who may find themselves the target of unscrupulous funeral practices, we can be open to false promises and might not closely consider costs, financial or otherwise. I am all for it when someone shows a demonstrable improvement due to some therapy or supplement; by no means do I dismiss those treatments solely because they haven’t worked for me. But we need to put our pain aside and think critically about what we are paying for, or putting into our bodies, or letting people do to us, rather than allowing it all for no better reason than it’s just another straw to grasp.
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Very well said & compassionately put. Your understanding of why we can hold on to these claims coming from such an honest & experienced place, which also recognises that we have to go through it to arrive at acceptance of one form or another.
It would be hypocritical of me to preach too heavily, especially since it wasn’t all that long ago that the same wagging fingers could be pointed back at me.
Ooooh I am soooooooooooooooo with you! I had to come up with a rule to figure out what I would do, to even begin to LIMIT the treatments… my rule was that if an option was not sustainable then I would not even try it. Thus if the treatment was of a specified life span AND I could afford it (and it made sense to me etc) then sure, I’ll give it a go. Similarly, if a treatment (for example the bazillions of supplements) was ongoing, then IF I could afford it on an ongoing basis, then I would take it! Otherwise, nope! Thus, I usually only have one supplement and occasional bouts of another one (which is part of a controlled way of dealing with toxicity in my joints)…
It just gets insane otherwise! If something is going to be effective, then it either needs to be cheap enough to be affordable long term thus the level of effect just has to be enough that the benefits outweigh the risks, but if it is expensive, then essentially any benefits have to improve my ability to function enough to earn more money to cover it PLUS some (I do not see much point in earning just enough to cover the treatment with no additional benefit).
It’s crazy though. In the end, I think what helps me the most (other than adequate fluid intake and judicious use of useful medications) is just kindness and compassion from GOOD friends! People who don’t judge me and don’t throw a million ideas down my throat but actually are able to recognise when something might be worth suggesting for investigation! Acceptance is a really powerful thing!
Craziness though! I do understand the absolute desperation people get to, and I know I’ve been there myself, but at the end of the day, if there was a solid cure for the various illness, then it would spread like wildfire!
I like that you make me think
Your last comment, about a cure “spreading like wildfire,” is so dead on. The snake-oil salesmen really fail to take into account how networked together people with chronic illness are these days, so the “new treatment proven to work!” claims can be easily rejected that way. As opposed to, say, Ampligen, which many people have legitimate concerns about but at least there is a documented history of the drug’s use and effects for people with CFS.
You also make a good point about the cost-benefit analysis. I’ve done a couple of short juice fasts in the past, which may be considered “woo” but since my expectations were low, I was careful not go too hardcore about it, and all it cost was a week’s worth of juice, I felt and still feel they were worth doing (for me). But if someone touts a supplement that “really works” but is going to cost me $40 a month, I’m going to do a lot more research, including checking in on those networks I’ve mentioned.
Expect an email soon!
As “that friend” I still feel kind of bad about sending him your way. As someone who does NOT have to put up with this kind of constant barrage I took him at more of a face value than I probably should. The fact that he hit me up while I was otherwise preoccupied merely exacerbated the situation. I’m glad you realize that I did so not maliciously but instead through ignorance of his ulterior motive and an unhealthy level of trust of a stranger.
Good article, Joey!
The only reason I qualified that statement about you not “really” being to blame is that technically, you did send him my way. But of course I don’t hold any ill will about it. You were busy recording a podcast; I wouldn’t have expected you to pause to investigate this guy’s credentials! That’s my job and I don’t mind it. So quit feeling bad about it, and what the heck is up with that ancient avatar?
There may be another explanation. He may simply be conning all whom he contacts. Some years ago, I got a phone call that went something like this:
Him: “Hello, I’m a disabled person confined to a wheelchair. I’m selling light bulbs over the phone. They cost (more than I could get them at the store)”
Me: “Is the fact that you are confined to a wheelchair supposed to make them better light bulbs?”
Him: “No.”
Me: “Then, why was that the first thing out of your mouth? Tell me why I should buy light bulbs from you.”
Him: “Oh, never mind.” click.
Since I couldn’t see him, I can’t tell whether he had a genuine disability or not. As he couldn’t come up with an actual reason to buy his light bulbs, over the phone, at an inflated price, I’m guessing he didn’t. But it was a good story.
My level of sympathy is pretty high for people with deluded ideas about their own illness, drops sharply when those people try to take advantage of others, and plummets into the negative in a situation like you describe. Using his wheelchair to elicit pity and therefore a sale is execrable, and moves on to unconscionable if he wasn’t in fact disabled (my own guess).
In my case, the guy’s story about his illness has a definite whiff of sincerity about it, meaning not that his case is persuasive but that I do think he really believes it himself. But that’s moot since he has to lie to attract people’s attention to it.
I have Fibromyalgia and I have read every single piece of nonsense on how it is diet that is to blame, heavy metals, stress and other completely unbelievable theories. I have been told that I should take this supplement, that supplement, do yoga or not eat this food or that food.
So what actually got rid of my symptoms and allows me to lead a relatively normal life? Anti-epilepsy drugs.
Still waiting for the next big selling book on Fibromyalgia that champions pharmaceutical drugs as a way to control this disease, but I don’t think I will hold my breath.
I have Fibromyalgia as well, thrilled to hear that the anti-epilepsy drugs are working for you.
I just wanted to mention quickly for others that might be reading that stress can make the symptoms of Fibromyalgia (and many other chronic pain disorders) more pronounced, and stretching/low impact exercise does have verifiable long term benefits especially in helping to prevent soft tissue damage.
There are plenty of quacks out there selling supplements, and yogi’s insisting that their form of stretching is more beneficial than the stretching you can do without handing them your cash due to shakra alignment, etc… but be careful not to throw the proverbial baby out with the bathwater. *smiles*
Tanya, I couldn’t agree more. Reducing stress and increasing the body’s strength as much as possible are really important for us. And thankfully there are so many free (or cheap) and harmless ways to accomplish these things; I wrote about the Wii Fit but of course anyone can do their own stretching/calisthenics/yoga/etc. without needing to buy anything or have your aura cleansed at the same time.
Your comment is making me consider a post about all the free or very cheap and beneficial “alternative” treatments we can do to help ourselves without diving into the woo.
I think the stereotype of these illnesses as being vague, psychosomatic problems is what attracts all the suggestions of “alternate” therapies. Not that I am a dear friend of Big Pharma, but I do think when people with fibro or similar illnesses find help from pharmaceuticals, it might also help to validate these illnesses in the eyes of the “all you need is to detox” crowd. Or maybe just piss those people off. Either way it’s a win all around, especially for you, Riayn.
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