Tag Archives: chronic fatigue syndrome

Judy Mikovits in jail.

(Reposted from my Tumblr.)

Two years ago, researcher Judy Mikovits was riding high atop a wave of promise.

She had published one of the most discussed papers of the year in one of the most prestigious scientific publications in the world.

Her team’s findings were hailed as a potential breakthrough for an illness — chronic fatigue syndrome — that had long frustrated researchers. She was invited to speak at scientific conferences around the globe. Adoring patients crowded her at her talks.

Now, in a stunning twist, Mikovits is sitting in a California jail cell, held without bond, awaiting an arraignment hearing Tuesday. An arrest warrant issued by University of Nevada at Reno police lists two felony charges: possession of stolen property and conspiracy.

She was fired in September, and this month her former employer filed a lawsuit alleging she had wrongfully taken lab notebooks, a computer and other proprietary data. Other researchers have discredited her work, and the journal Science, which published her study, is investigating whether the data were manipulated.

The only constant is the patients who continue to rally around her.

“Remember that we are behind you every step of the way, even whilst you sit alone in jail wondering what will come next,” one person wrote on a blog called OslersWeb.

(source: Trine Tsouderos, Chicago Tribune)

Well, what in the seven hells is this now? Could this scientific soap opera get any more bizarre? Never mind, forget I asked.

“The only constant….” Yes, the only constant there will ever be are the patients who have completely abandoned critical thinking in favor of hero worship. These are the exact same types who continue to lionize Andrew Wakefield despite his incompetence, fraud, and penchant for giving colonoscopies and spinal taps to children without consent or approval. No matter whether Mikovits is found to have committed two federal crimes, or defrauded the entire ME/CFS community, these patients will be “behind [her] every step of the way.”

I’m pretty sure if Mikovits killed an ME/CFS patient with an XMRV-infected mouse, in front of two CCTV cameras and a network TV crew, this particular subset of the community would claim she’d been framed. Why am I not writing as much about ME/CFS anymore? Because these very people have completely worn me out with their ridiculous bullshit. I loathe having to be associated with them and I’m no longer going to sugarcoat it.

Happily, science has moved on to many more interesting research angles. What are these die-hards going to do when a cure or treatment comes from, say, gene research and not XMRV, I wonder? Admit they were wrong? I eagerly await that day for a number of reasons.

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Will there ever be a cure for CFS?

I was asked this question on Formspring by @jwhouk the other day, and I decided it was worthy of a better answer than a few lines on Twitter. Actually, the way he phrased it was

Deep down in your heart of hearts (or whatever you want to call it) — do you believe/think there will ever be a cure for CFS? Or at least an understanding of causes for it?

which I like because I feel more comfortable talking about my beliefs and speculations than the hard science. And then the timing was funny as this story came out yesterday. It’s a report on a study published in the Proceedings of the National Academy of Sciences (PNAS), detailing a replication study seeking XMRV in patients with chronic fatigue syndrome. The PNAS paper had been held for some time, frustrating and angering patients, and now that it’s out, the results are interesting. Although the researchers did not find XMRV, they did find a related family of retroviruses. This isn’t going to end the controversy over XMRV anytime soon — there are many questions remaining about the selection of patient cohorts, why other studies were unable to find XMRV, and so forth — but more information is always good.

This is part of my answer to the question, this fact that right now there is more interest in CFS research than there has been in years. For one thing, this is obviously directly good news for people who want a cure. Even if XMRV or MLV turn out to be complete red herrings, who knows what else may be discovered along the way. And a major side benefit of this research is that more people — physicians and otherwise — learn that CFS is a true somatic problem that warrants research. The disease and the people who have it receive validation, which may lead to better care and further research as well. So these are all positive signs even if there are some very questionable aspects, such as patients starting dangerous treatments for things they don’t even know they have yet.

The problem with CFS is that, although we patients tend to insist on it being treated as a disease, it is not one. It is a syndrome — an association of related symptoms — and those symptoms and their severity differ enormously from person to person. (It’s important to note this does not mean that anyone with a few fatigue-related symptoms has CFS. There are several sets of different but related diagnostic criteria.) Some patients have mostly neurological symptoms, and tend to identify as having ME (myalgic encephalopathy), while others like me exhibit almost exclusively post-viral symptoms. There are endless debates over the name of the syndrome, and whether it should or shouldn’t be lumped together, as it often is, as ME/CFS. This is why I remain skeptical about XMRV: does it really seem possible that a single retrovirus, or even a family of them, could cause such an enormous disparity in etiologies, disease progression, symptoms, and so forth? Possibly in one particular set of patients, but what about everyone else?

So I don’t really envision a vaccine or gene therapy anytime soon or ever that will wipe out CFS, although I do expect better therapies and treatments. I think what is more likely to happen is that as we increase our understanding of various illnesses, especially autoimmune ones, patients formerly diagnosed with CFS will be found to have something else. This happens frequently enough now (although sometimes in the other direction, as in patients with depression who are later found to have CFS as a somatic cause), and there’s no reason to think it won’t continue. As medical science becomes more knowledgeable about autoimmune disorders, demyelinating disorders, and many other related areas, I think CFS patients will continue to be rediagnosed with more specific — and hopefully treatable! — illnesses. In this sense, medicine will “cure” CFS by redefining patients into other categories, and with luck, having no more use for this “garbage can” of a diagnosis.

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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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