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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18 Responses to CFS and “the god of the gaps”

  1. I received a similar comment on my blog, on my article “Shopping Around For Supplements”. I haven’t checked out the site yet, but it left me a bit puzzled. It’s obviously an add, but the Akismet WordPress plugin didn’t catch it and the first sentences of the comment make it clear that it actually is also a comment on my article:
    “I always have gone to see doctors and naturopaths and other healers, and when they recommend product I never buy it from them – I write it down and get it online. Way cheaper that way!”

    This isn’t an automatically generated comment aka spam, someone is really making an effort to promote their product by leaving comments on people’s blogs, and by sending me a personal email via the form on my blog. They not only read my article, they must also have read my blog to write that email.
    I’m impressed, and feel honored. Someone out there thinks my blog is worthy enough to create an income stream for them. LOL
    I haven’t decided yet what to do with the comment. Either to delete it, or to remove the links from the comment and write a reply. I think I will choose the latter.

    • Yes, I agree it’s a nice trick to get around Akismet! I hate to burst your bubble, but although you know I think you have an excellent blog, I’m sure these people just keyword search for “CFS” and then spew their nonsense on the most appropriate-seeming posts.

      I definitely advocate removing the links and replying. That’s exactly what I was going to do with this comment before I decided I didn’t want it stinking up my post about awareness.

      • I remove the links and reply unless they’ve written a novel in my comments. Those I delete and leave behind an explanation. I’m sure that someday I’ll be either lazy or cranky and just hit “delete” instead.

  2. A few years back, when my primary doctor first went on leave for cancer, he had a “substitute” looking after his practice. The doctor who was ill was compassionate, understanding and supportive – and also had CFS/ME, so he really understood his patients.

    Dr. Newguy came in and absolutely was convinced that this sugar theory (he showed me a book he was reading about it, and I think it was THIS book you’ve mentioned) was the cause of CFS. I went along with things for a little while, cut back on sugar intake – even tried drinking diet pop (even though I have a horrible time with artificial sweeteners badly messing with my system) – and there was absolutely no significant change. None. Nada. Zilch. Zippo. Now, I didn’t think much of Dr. Newguy’s credibility to start with because he’d just strolled in and insisted this was the problem, but when absolutely nothing changed, I knew he was full of it. I’d resolved to give him a good chewing out at my next appointment, but my old doctor had already given him the heave-ho.

    Even a legitimate doctor with good intentions can be taken in by this horse-puckey. I often wonder what chance someone who doesn’t have a really half-decent understanding of biology stands when confronted with this sort of confound-with-bullshit type of pitch for their money.

    I guess many patients believe that THEIR doctor must have missed something and must be doing something wrong, so when presented with someone else with medical credentials that claims to have an answer, the default response is to transfer hope from the guy who says “there is no cure” to the guy who says “I know the answer” – but sadly, I’ve yet to find a case where this was not a mistake. Most of these scammers have as many treatment options as you’re willing and able to pay for.

    • the default response is to transfer hope from the guy who says “there is no cure” to the guy who says “I know the answer”

      I think that’s it in a nutshell. And I can totally understand that mindset because I went through something similar. When I was diagnosed, the first thing my doctor did was look at an old sleep study and rejigger my sleep med cocktail, with very good success. That plus his amount of clinical experience with CFS put me squarely in his corner (to this day).

      But I kept saying “Once medical science can’t do any more for me, I’ll check out the alternatives.” And I really believed that this was the right way to go about it…but somehow I never did get up the motivation to do it. And around the same time was when I was learning more about skepticism, and alternative medicine, and that combined with my instinctive feeling that it was mostly worthless kept me from wasting any time or money on pointless treatments.

      I can very much see where someone gets to either an emotional or, in my case, even a logical place where this stuff seems like a good idea (or at least worth trying), but without the knowledge, training, and/or desire to analyze it further, just goes ahead with it.

      Suddenly I have this urge to make an appointment with this woo-tastic place I walked into and pretty much walked straight out of again, a few years back. I’m pretty sure the initial consultation is free, and I’d love to hear what kind of expensive silliness they try to sell me. Hmm…

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  4. Well, I hope I don’t get lumped in with the quacks –

    Have you considered a link between electromagnetic pollution and CFS?

    Check out the videos and links in my post, one of them is to a woman (a former CFS sufferer) who learned about electromagnetic pollution the hard way and cured her chronic fatigue by eliminating it.

    areyoutargeted.com/2010/06/11/low-levels-of-exposure-to-electropollution-harmful/

    • I’m sorry you don’t want to get lumped in with the quacks. Let’s look at why, based on your comment, you will be anyway:

      1. Again, exactly one sentence referring to my post.
      2. Commercial website in both URL and body of comment (which I have stripped)
      3. A scientifically ridiculous claim
      4. The mention of someone’s easy recovery from CFS
      5. The conflation (after I mentioned it twice in my post) of CFS and “chronic fatigue.) This is either because a) you didn’t read the post and just saw a marketing opportunity, b) you don’t know what CFS is, c) you know you can’t actually claim to cure CFS, or d) any combination of the above.

      I see no point in visiting your website, but I invite anyone else who wants some fun to go right ahead and report their findings here.

    • Pretty funny. This reminds me of comments I’ve gotten which are clearly a product of targeted spamming.

      Once I had a note telling me that my readers would love this site about 10 hot celebrities who are actually very smart. #1 on the list was Jenny McCarthy.

      They left that comment on a post titled “Jenny McCarthy is a Moron”.

      Um, yeah. If it were not for “electromagnetic pollution”, we’d all be dead. Electromagnetic energy ranges from radio waves to gamma rays and everything in between including… *drum roll* …light!

      Notice that “electromagnetic” does not appear on this list of “forms of pollution”: http://en.wikipedia.org/wiki/Pollution#Forms_of_pollution

    • Jeremy, have you considered you may be a paranoid schizophrenic?

      Get some help man.

      • That’s a very original observation. Nobody has ever made it before. Thank you for your idea, which was not influenced by anyone else in any way.

        areyoutargeted.com/2010/04/06/mirroring-and-predictive-programming-psyops/

        Anyway, I’m very apologetic about intruding on this site with unwelcome ideas. Perusing this site, I see the great successes you all enjoy and the sorts of remarks you make about outsiders are evidence of true smartness. I am humbled by the attention that the really smart people here are paying to me and I retreat with my tail between my legs.

        • If you perused this blog carefully, you would see that I don’t talk about “smart” or not. I promote skepticism. There is no minimum intelligence level to be a critical thinker. Many of the people I know who are seriously chronically ill experience cognitive dysfunction, but it doesn’t stop them from thinking logically about claims. That’s what this blog is about — and additionally, I see no one here impugning your intelligence, just the ideas you put forth. There is a big difference. Good luck.

  5. Wilhelmina Jenkins

    There used to be a woman, a CFS “advocate”, who claimed that God had given her CFS for a short period of time and then taken it away so that she could help others (people whom God didn’t like as much, I suppose!)

    Because I’ve been around for so long and my name and address used to be on a referral list for newly diagnosed patients, I received lots of free cures in the mail! Lucky me! But I’m such an ingrate that I promptly tossed them in the trash. Such unreasonable behavior led some people to claim that I was “in denial about my illness.” Oh, sure.

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  7. Matthew Van Eman

    Nice description of Dr. Teitelbaum. I have a family member who was treated at his clinics, despite the advice of many not to go there. It was a money sucking scam. I’m an objective scientist, and I think the way you describe Dr. Teitelbaum and the red flags that should be raised to anyone who considers his treatments are spot on.

  8. Quoted from the Texas Medical Board website about one doctor from the Fibromyaglia and Fatigue Centers where Dr. Teitelbaum is medical director.

    ON AUGUST 27, 2010, THE BOARD AND JAMES EDWARD STEVENS, D.O., ENTERED INTO AN AGREED ORDER REQUIRING DR. STEVENS TO COMPLETE WITHIN ONE YEAR 24 HOURS OF CME INCLUDING EIGHT HOURS IN IMMUNOLOGY, EIGHT HOURS IN ENDOCRINOLOGY AND EIGHT HOURS IN MEDICAL RECORD-KEEPING; AND PAY AN ADMINISTRATIVE PENALTY OF $3,000 WITHIN 60 DAYS. THE ORDER WAS BASED UPON DR. STEVENS’ FAILURE TO PRACTICE MEDICINE IN AN ACCEPTABLE, PROFESSIONAL MANNER CONSISTENT WITH PUBLIC HEALTH AND WELFARE, NONTHERAPEUTIC PRESCRIBING OF DANGEROUS DRUGS FOR A PATIENT WITH FIBROMYALGIA AND CHRONIC FATIGUE SYNDROME.

    http://reg.tmb.state.tx.us/TMBPublicWebSite/BoardOrders/ViewBoardOrders.aspx?ID_NUM=58407&SESSION_ID=542701879