Category Archives: CFS

Bitten and shy

There is an ongoing war, as well there should be, waged by the proponents of medical science against those who reject, demonize, deny or misuse it. The war takes place on many fronts and on many levels, and some successes include the continuing downfall of Andrew Wakefield and the pronouncement by the British Medical Association that homeopathy is “witchcraft.”

Skeptics generally don’t have much use for people who have rejected medical science, or “allopathy” as some of those people would have it. (A term, by the way, invented by the guy who made up homeopathy.) Such people are usually characterized as, variously or in combination, stupid, ignorant, denialist, uneducated, brainwashed, crazy, deluded, superstitious, and even dangerous, to themselves or others.

And some of them are. The homeopath who killed his daughter by refusing actual medical treatment for her eczema is dangerous and possibly crazy. Religious objectors to blood transfusions and chemotherapy are superstitious. The scared parents of autistic children who throw in their lot with the anti-vaccination movement are poorly educated on the topic of vaccines. And then there’s people like the Health Ranger and J.B. Handley and so on, people who I won’t dignify with a link, but to whom I am happy to apply some if not all of the above epithets — and worse.

But there’s a certain population that I believe deserves greater compassion and understanding. People with long-term, incurable chronic illnesses may often come to reject science-based medicine because they themselves have come to actual harm from it, and sometimes repeatedly. I’m not talking about hypochondria or persecution complexes. I’m talking about people who have undergone actual trauma, mental or physical, at the hands of medical doctors. For example, this link is not from the most reliable site, but the incidents related are far from unheard of in the ME/CFS community — misdiagnoses, harmful biases, lack of understanding about the illness, and worse.

Don’t get me wrong. I’m not giving anyone a pass. I went through a hellish time when I was diagnosed with Graves’ and the incompetent idiot of an endocrinologist overdosed me so heavily on anti-thyroid medication, it took a year for me to recover from being seriously hypothyroid, during which time several other problems arose that have left me disabled. After that it took uninterested doctor after uninterested doctor before I found one who not only gave a crap that I was no longer able to function, but even cared enough to treat me! Oh yes, I was bitter. But rejecting science altogether because of your bad experiences is like never reading a book again because you thought Twilight was a piece of excrement. All of this taught me how to better evaluate doctors, and since then my experiences with physicians have improved greatly.

So this is not an apologia, but rather a plea for understanding. The people I’m talking about haven’t simply slipped into a life of hippy-dippy naturopathy due to the toxins in the air and the mercury in vaccines. They have been physically injured, had their illnesses worsened, been humiliated and brushed off and laughed at and completely invalidated by physicians, all the while struggling to cope with being sick or disabled. Not only has science “failed” these patients (as they see it) by not having provided a cure or even a treatment for some of those illnesses, but its individual representatives have personally failed them as well. These people don’t just imagine they’ve been done wrong by science, like the antivaxxers — they legitimately have been, just as my being overmedicated and spending months in “hypo hell” were not figments of my imagination.

If you put yourself into that position, I don’t think it’s too hard to see why someone might eventually give up on science, especially someone who has undergone years if not decades of these problems. Maybe they turn to homeopaths and naturopaths, who of course profess deep caring and understanding because they literally have nothing else to offer…but it’s attractive to patients who have been routinely dismissed by “allopaths.” Or maybe they glom on to what looks like science — such as a single, as yet unreplicated XMRV study — but refuse to let the actual scientific process take place before canonizing its researcher and creating a cult of personality, not of logic or evidence. Neither situation is positive and, again, I am not excusing people on the basis of what they’ve gone through. It is very hard to hang on to one’s critical thinking in these situations, but that doesn’t make it okay to give in to paranoia and superstition.

From a page titled "Nazi Connections to Allopathy." Seriously.

When it comes to winning back the minds of patients who have retreated from science as a reaction to their experiences, perhaps skeptics need to take a different tack. Some people go down the rabbit hole and never come back, of course. (And I always wonder about those anti-science converts and what’s going to happen on the day that science produces a cure or treatment for their illness, the one that homeopathy will never come up with. Will they reject it on principle? Unlikely.) I’m not talking about them, because why fight a battle you can’t win? But I truly believe skeptics need to stop lumping all these “denialists” into the same camp. Promoters of science-based medicine will occasionally throw a bone in the direction of “feeling sympathy for these people but…“, a statement unlikely to reach someone who has heard this line zillions of times. True compassion, however, just might.

We skeptics constantly exhort people to stay open-minded and thoughtful about these subjects, but the same onus is upon us. Assumptions about the reasons and motivations behind people’s rejection of medical science do nobody any good. Sick, exhausted, cognitively impaired patients do not deserve to be tarred with the same brush as those who actively seek the defamation and destruction of medical scientists. To people for whom there is no medicine other than Western scientific medicine, any rejection of that may seem intolerable, no matter what the reason. But the reason truly matters, because when you ignore that, you may be ignoring someone you could help, if only you hadn’t written them off like they’ve been written off so many times before.

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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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CFS and “the god of the gaps”

Chronic fatigue syndrome is a “god of the gaps” disease. Although the phrase has its origins in, obviously, religion, it works perfectly well for illnesses and conditions about which medical science knows only so much. And filling in those gaps we have quacks, scammers, controversial physicians, and other pseudoscientists trying to make a buck off what we don’t know. Some may genuinely believe that they have the answer; others are just banking on the sick and the exhausted to pony up in hopes of feeling better.

I’ve been asked a few times recently how patients are supposed to figure out who is trying to help them, and who is trying to scam them. And then, like a gift, I got a comment on my post about CFS awareness. I read it carefully, and then decided it was more suited as a way to answer that question than as an advertisement on that particular post. Here is the comment in its entirety. The only thing I have changed is that I removed the hyperlink to the site at the end, as I do not wish that site to get any referral traffic from mine. (The commenter’s personal link was the same URL.)

Great post. I have found that a lot of doctors don’t really believe in CFS and they seem to think I was making it up, but the book “Beat Sugar Addiction Now!” is written by a doctor and he knows so much about it. I feel like I learned a lot about my own body just by reading the section on CFS, and it made me annoyed that no one had told me this before. I started reading the book because I thought it was a diet book and would maybe help me lose weight, and if I wasn’t carrying around so much weight maybe I would feel better overall and be less achy. But it’s actually a whole part on CFS is in it and I learned a lot about my hypothalamus that I never knew before. The information is good and smart science but not too hard to understand. You need to find help if you have what I have-so much pain it hurts to pull my shirt over my head or bend down to tie my shoes. I had to start wearing ugly crocs just because they were easier to put on and more comfortable, and that is not who I wanted to be-a fat person in unstylish shoes who has trouble getting in and out of the car. I feel like if I can find a doctor who will help me and I can do what it says in this book, I will get a lot better. It is written very convincingly and you can tell he knows what he’s talking about. Plus he has a list to help you find doctors that treat CFS and I am ready to get treated and stop feeling like my nerves are exposed every time I move. Here’s the website for Dr. Jacob Teitelbaum: http://endfatigue.com/

By the time you get to the end of this, you’ve passed by a bevy of red flags. Let’s check them out.

  • The first two words are the only reference to my post at all.
  • The very next sentence introduces the subject of this advertisement, a book by “a doctor” — that’s intended to impress.
  • The person’s situation is not indicative of CFS. Many scammers either intentionally or out of ignorance conflate chronic fatigue, a symptom of many things, with chronic fatigue syndrome/myalgic encephalopathy, a condition that has specific criteria for a patient to be diagnosed with it. The commenter discusses being overweight and having a lot of intense physical pain — neither of which are signs or symptoms of CFS.
  • The commenter attempts to gain sympathy by weaving in a sob story, but in a 12-sentence comment, only three sentences did not refer to this amazing book.

At this point, I have enough information that I don’t need to waste my limited time and energy checking out the website, nor will I allow this comment to sit on my post about CFS awareness. “But Joey,” you may cry, plaintively if you like, “perhaps this person is not a shill, but merely someone whose life was truly changed by this doctor and his book.” Very well, if we’re going to be skeptics, let’s go check out the source. (Of course the very name of the website is a clue. As I mentioned previously, fatigue and CFS are not the same thing. The former is a symptom of just about everything, and the latter is an illness.)

Are you back? Me too. Let’s dig in.

The first thing I saw was Teitelbaum purporting to diagnose someone from Fox News in two minutes and thirty seconds. The clip itself is called “Diagnosing chronic fatigue,” (not CFS), and he doesn’t even do that. The entire front page is about branding, and that is a major red flag. Research physicians whose work has been vetted by medical science do not need to pimp themselves out with iPhone apps, mailing lists, and cute names like “Dr. T.” Right off the bat it’s clear this is a site with the intention to sell.

Next, I checked out who this fellow is. He appears to be a legitimate M.D., but his affiliations, publications, and speaking engagements do not exactly trumpet the career of a man who is regularly published by respected sources. It’s noted that he’s appeared on Oprah’s and Dr. Oz’s shows, two continuing advertisements for all manner of pseudoscience and bad medicine. In addition, this sentence caught my eye:

Dr. Teitelbaum knows CFS/Fibromyalgia as an insider — he contracted Chronic Fatigue Syndrome when he was in medical school and had to drop out for a year to recover.

One whole year to recover, huh? (Are my fellow patients laughing yet?) And has a miracle cure? If the lumping together of a cure for fatigue, CFS, and fibromyalgia didn’t set off your radar, that certainly should.

Next I checked out the site’s information page about CFS and fibromyalgia. Here, fibro is referred to as a “sister illness” of CFS. Now while this is a common theory — one my own doctor subscribes to as well — a connection has not been definitively identified by medical science, nor is patient management identical between the two. In addition, many of the “other common symptoms” of CFS listed here (such as increased thirst, weight gain, and recurring infections) are not part of either the Fukuda criteria or the Canadian Clinical Case Definition.* The man cannot even define CFS correctly. But here’s the biggest, reddest flag you could possibly want if after all this you’re still not sure if this is worth looking into.

What Causes These Illnesses?
Hypothalamic dysfunction.

That’s it, folks. We can all go home. He has the single answer that hundreds of researchers have not been able to come up with for years, and not only that — it fits all patients with CFS or fibromyalgia. It’s also conveniently vague enough to fit into any actual, valid research that might turn up. And what is a patient’s next course of action? Reading about and eventually buying products and services from “Dr. T.”

There are plenty more howlers on the site, but hopefully I’ve made my case. This guy and his presumed shill are perfect examples of the gods of the gaps who are preying on sick people by claiming to have not only an answer, but the answer. And like all good scam artists, his rap has a grain of truth to it. It is certainly suggested for people with CFS to eat less sugar. Not only that, while you may blow me off as someone primed for suspicion, I’m in fact a believer when it comes to sugar “addiction.” I saw a nutritionist in college who forced me to cut all sugars whatsoever out of my diet, and the improvements to my health and weight, plus how it felt when I fell off the wagon, left me pretty convinced that breaking that addiction is a good thing to do, if you can manage it. (I don’t know if it qualifies as a true medical addiction; I’m using the term casually here.)

And this is why this kind of person is so insidious. He does give good advice, but it’s surrounded by so much bad science and speculation and overreaching claims that he’s rendered totally untrustworthy. My hope is that any CFS patient who has any amount of knowledge about her illness (which is every patient I’ve met!) can see past the peppy nickname and shreds of decent advice, underneath to Teitelbaum’s colossal failure as a source of legitimate information or treatment for CFS or anything else. Except perhaps sugar addiction. If that’s your only problem, then knock yourself out.

I recognize that this is a long discussion of what will appear to some of my readers as a very straightforward and obvious scam to avoid. But if people didn’t buy into it, this guy wouldn’t still be around. My hope is that by examining both the comment and, briefly, the site itself, I might inspire other chronically ill people to look equally carefully at the links and sites and doctors that are recommended to them.

* “Marked weight change” is one of the many symptoms that may be used in the Canadian definition, but not specifically “weight gain.”

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