Lobbying to cure a disease that may not exist

Science and health reporting in newspapers is notoriously pathetic. Reporters with no real background or knowledge about the subject on which they're reporting are forced to puke out stories that more often that not are full of inaccuracies and misunderstandings.

So I don't hold it against the reporter behind this article that he was taken in, but let's see if we can add a bit more informed commentary to the topic.

That topic is "Chronic Lyme Disease."

Please note in advance that CLD is not the same thing as the well-established and reasonably well-understood diagnosis of Lyme disease. More about that later, but first let's look a bit at this S&E article, entitled "Lobbying Hard for Lyme Disease Sufferers."

It's an awful feeling to hear a doctor say there is nothing wrong with you, when you know something isn't right, according to Groton resident Donna Castle. But for many people who contract Lyme disease, that's exactly what can occur, said Castle, whose daughter has the disease.

"'It's all in your head' is a classic diagnosis given to Lyme disease patients," Castle said. "There is no 100 percent reliable blood test for the disease, and the symptoms can vary so much, which makes it very difficult to diagnose."

Pretty weird, huh? Doctors treat Lyme disease all the time. They don't say it's all in your head, because it's not. And while no test is "100 percent reliable", the current test is about 90% accurate. That's actually a very reliable test.

Also note at this point the way that doctors and their extensive knowledge, resources, and familiarity with Lyme disease are presented as the bad guys, while the vague someone who "knows something is wrong" is presented as more reliable. Indeed, something may be wrong with that person, but there's a large gap between "I feel sorta funky" and "I have Lyme disease."

The fact of the matter is that the lobbying group (created by erstwhile congressional candidate Kurt Hayes) in question is not about Lyme disease. It's about Chronic Lyme Disease. Again, not the same thing.

So we'll just skip the part of the article where Lyme disease is discussed. Yes, Lyme disease is real, and yes it's endemic to this area. It's a public health issue that deserves attention, but that's not the attention that Hayes' group is going for. They're more interested in promoting the quackery of CLD.

Now would be a good time to talk about what CLD is, and the different groups that exist within those who believe they suffer from CLD. We'll use the four categories laid out by Feder et al. in this New England Journal of Medicine paper on CLD.

First, what is CLD? According to the NEJM:

This term is used by a small number of practitioners (often self-designated as "Lyme-literate physicians") to describe patients whom they believe have persistent B. burgdorferi infection, a condition they suggest requires long-term antibiotic treatment and may even be incurable. Although chronic Lyme disease clearly encompasses post–Lyme disease syndrome, it also includes a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection. Chronic Lyme disease is used in North America and increasingly in Europe as a diagnosis for patients with persistent pain, neurocognitive symptoms, fatigue, or all of these symptoms, with or without clinical or serologic evidence of previous early or late Lyme disease. [my bolding]

That's a pretty decent nutshell. But there are different groups within the CLD camp, and they're worth looking at too. Luckily, we have a nice little graphic to see them easily!



Okay, maybe that's too little. Let me reiterate here:

1. Patients in this category have vague and commonplace symptoms like fatigue, depression, headaches, etc. They have no observable evidence of having had a B. burgdorferi (the bacteria that causes Lyme disease) infection, and actually pop up pretty often even in places where Lyme disease is not endemic. Chances are reasonable that they've never had Lyme disease at all.
2. Category two patients have a disease, they just don't have Lyme disease. Rather, they have something else that has been misdiagnosed as CLD.
3. Category three patients have no objective history of Lyme disease, but do have antibodies against B. burgdorferi. Antibodies alone have a low predictive value, so the person may or may not have ever actually had Lyme disease, but their concern is understandable.
4. Category four patients have post-Lyme disease syndrome. They've actually had Lyme disease for sure, and now have something weird going on (often myalgias and the like). It's worth noting that evidence suggests this is not due to a chronic infection, and antibiotic treatment appears ineffective.

All the groups here are suffering from something (more likely, many different somethings), and it's totally understandable that groups 3 and 4 wonder whether Lyme disease is the cause. Groups 1 and 2, on the other hand, are just likely to be confused.

Back to the S&E article, here's someone in group 4:

Lunenburg resident Sheila Webb Richards was diagnosed with Lyme disease about a year ago, and continues to suffer from the symptoms.

A doctor put Webb Richards on antibiotics for 28 days and she felt better for a period, but her symptoms returned a short time after.

Doctors and an infectious-disease specialist have told her that although she continues to test positive for Lyme disease, the disease is not active. They refuse to put her on more antibiotics, Webb Richards says.

"It's frustrating, because my symptoms continue to feel very active," she said.

I'm quite sure that Mrs. Webb Richards is being honest when she expresses frustration, and I don't doubt that she feels crummy. But antibiotics are unlikely to be of any real benefit, at least if you exclude the placebo effect. You can't really blame her for wanting to feel better, even if it is a placebo effect.

Her husband is also frustrated:

Her husband, Tim Richards, said most doctors won't allow his wife to continue on the antibiotics past 28 days because of guidelines set by the Centers for disease Control.

"The heart of the problem is that the profession has guidelines that are decided by a review board," he said. "In the case of Lyme disease, they limit treatment to 28 days of antibiotics. The insurance companies go by that standard."

A "review board"? Yes, a bunch of extremely knowledgeable scientists, doctors, and epidemiologists got together and said "Hey, all this data we've got shows that antibiotics don't really help, but we'll recommend four weeks of treatment just to be safe." The bastards!

Worse yet, the insurance companies use this data to say they won't pay for unnecessary and pointless antibiotics that would only increase medical costs without providing any benefit to the patient. Jerks!

If Mrs. Webb Richards is one of those sympathetic group 4 cases, then our friend from the beginning of the article, Donna Castle, seems to fall into group 1 or 2, where I have much less patience for them. After all, she did seem to indicate that doctors found no evidence of Lyme disease in her daughter. So why does she talk like they did?

Castle's first experience with Lyme disease came about four years ago, when her daughter's Lyme disease was misdiagnosed as amyotrophic lateral sclerosis or ALS (Lou Gehrig's disease).

"As awful as Lyme disease is, it was a relief that she did not have ALS, which is terminal," said Castle, who runs a Lyme disease support group once a month at the Nashoba Valley Medical Center in Ayer.

Well yeah, Lyme disease is way better than ALS. But where's the evidence that she even has Lyme disease? She could be in the first group, where general symptoms lead to that self-diagnosis. Or she could be in the second group, and have something else wrong with her. I certainly hope that Ms. Castle is looking for the real cause of her daughter's suffering, though it sounds like she's put all her eggs in the rickety CLD basket.

So, what does this all lead up to? Legislation!

Hayes and Castle are now pushing for new legislation that would protect doctors who prescribe prolonged antibiotic treatment.

House Bill 1148, introduced by state Rep. Bob Hargraves, R-Groton, is tentatively scheduled for a hearing at the Statehouse, Sept. 22.

This bill is titled "An Act relative to the treatment of chronic Lyme disease" and the full text is here.

It's short though, so I'll just quote it:

Chapter 112 of the General Laws is hereby amended by inserting after section 12CC the following section: -

12DD. A physician may prescribe, administer or dispense antibiotic therapy for therapeutic purposes to a person diagnosed with and having symptoms of Lyme disease of [Sic] a diagnosis and treatment plan has been documented in the physician’s medical record for that patient and no physician shall be subject to disciplinary action solely for prescribing, administering or dispensing long-term antibiotic therapy fo9r [Sic] a therapeutic purpose for a patient clinically diagnosed with Lyme disease if a diagnoses and treatment plan has been documented in the physician’s medical record for that patient. [my bolding]

Man, are all bills that poorly-spellchecked?

Here's the thing about this bill, though. The way it's worded, it doesn't apply to Castle's daughter, and only may apply to Mrs. Webb Richards. Webb Richards doesn't have Lyme disease currently, she has post Lyme disease syndrome. Judging from the article, Castle's daughter doesn't appear to have ever been diagnosed with Lyme disease.

I won't even go into how prescribing an antibiotic that has no effect can't really said to be done "for therapeutic purposes".

But all that's just nitpicking. The purpose of the bill is to make sure people who think they have CLD can get vast amounts of antibiotics with no trouble. Even though antibiotics haven't been proven to do anything beneficial for them.

Nor would we expect antibiotics to do anything. Antibiotics in the treatment of Lyme disease are used to kill the B. burgdorferi bacteria. People with CLD don't have this bacteria around to kill anymore, and some of them never had it in the first place.

Of course, in addition to increasing medical costs for no reason, overprescription of antibiotics tends to lead to antibiotic-resistant bacteria. They should just call this thing the "MRSA and drug-resistant tuberculosis promotion bill."

Anyway, local politicians have their stances. Jen Benson unfortunately calls herself a "strong supporter" of it. Jennifer Flanagan, on the other hand, is "very interested in hearing from both sides on the issue."

Consider this my side, Rep. Flanagan! Please note that it's the side that actually cites evidence.

This bill is a bad idea, built on willfully ignoring the scientific evidence. People with CLD are suffering, but there's no evidence to suggest it's Lyme disease at the root of their suffering or that they will benefit from antibiotics.

Let's spend our time trying to figure out what actually is wrong with them, whether it be mental or physical, and not waste money and endanger public health by throwing antibiotics at them. People need real help, not placebos.

Local AIDS denialism!

If you don't pay a lot of attention to the lunatic fringes, you may not be aware that there are a fair number of people out there who deny the well-established link between HIV and AIDS.

Sure, there are the crackpots like Jeremiah Wright who think that the government invented HIV, but they're not the ones I'm talking about. Rather, I'm talking about people like Peter Tocci of Leominster, who in addition to being a local "holistic healer," just wrote a horribly misinformed letter to the editor that appears in the S&E today.

Fisking time!

Tocci starts off in the realm of reality. Don't worry, it won't last long.

On Jan. 30, the Sentinel & Enterprise ran a story about AIDS activist John Chittick's return from his awareness campaign in Africa.

On March 11, a Fitchburg march for National Women and Girls HIV/AIDS Awareness Day was reported.

Dedicated people like Mr Chittick, as well as Dorine Russo, who courageously told her story at the march, convey official AIDS information in good faith.

Well, that's pretty factual. See here for Chittick's website if you like. He's a good guy, doing good work, and is from Fitchburg.

Sadly, Tocci's use of the phrase "official AIDS information" suggests what's to come. So let's get on with it.

However, many qualified, even distinguished, scientists such as Nobel laureates Walter Gilbert and Kary Mullis, question HIV/AIDS. HIV was never isolated, and no study proves it causes AIDS.

There we go!

Our letter-writer gets his facts wrong right from the start. While Walter Gilbert did win the Nobel Prize for Chemistry in 1980, and was indeed an AIDS denialist, it appears that he changed his mind no later than 2006, due to the efficacy of antivirals in dealing with HIV/AIDS.

Kary Mullis, on the other hand, is not only the winner of the Chemistry Nobel in 1993, but remains an AIDS denialist. That's far from his only batshit-crazy belief, though.

In the lab, Mullis kept his beer in the radiation refrigerator, scoffing at safety regulations. He disputes that humankind can do anything to harm the environment. He believes in alien abductions; that he was visited by a radiant raccoon ET; in astrology; in telepathy; in “astral planes.” He happily recalls synthesizing experimental psychedelic drugs—and trying them out on himself. “It takes all kinds,” they say, and Mullis is in his own category. Colorful, creative, no doubt quite intelligent, he is many things…but not exactly a reliable guide to scientific facts and clear thinking, as the above examples show.

So our letter-writer has cited a guy who doesn't agree with him and a total nutcase as evidence for his claim. He pretty much had to go with these guys, though. After all, Mullis is the only Nobel winner to deny that HIV causes AIDS, and Gilbert at least used to agree.

How about "HIV was never isolated"? That's not true either, though it indeed hasn't been isolated to the very restrictive and largely arbitrary specifications that AIDS denialists demand. Go figure.

"[N]o study proves it causes AIDS"? Almost too absurd to even respond to. If you want to see some such studies, you could start with this and then dig into the references it cites. That's a tiny fraction of the studies out there, of course.

Phew! That was a lot of crap in one little paragraph. Let's move on.

No one denies people are sick. Cause(s), definitions, and approaches are what's being challenged.

Ralph Moss, Ph.D., author of The Cancer Industry, said, "The paradigm that was laid down for how to milk the cancer problem is basically the same paradigm which is being followed in milking the AIDS problem."

Hey, we're back to quoting crazy people! First, let me note that Moss's Ph.D. is in classics, nothing even remotely science related. He's a quack, who wants you to have coffee enemas and eat shark cartilage to prevent cancer (because sharks supposedly don't get cancer, even though they do).

So I'm pretty comfortable just dismissing him out of hand. I'll make sure to look him up if I ever have any questions about Jane Eyre or something, though.

More from our letter-writer:

Many people are taking highly toxic "anti-retroviral" (ARV) drugs. The DNA-chain terminator AZT was originally a cancer drug so toxic it was shelved. But the deadlier the disease definition, the deadlier the drug allowed, so AZT was revived.

The lies and misinformation just keep coming!

First, AZT is a reverse transcriptase inhibitor. It's not primarily a DNA chain terminator, for reasons too esoteric to get into here (see here if you're curious).

Second, it wasn't shelved because it was too toxic. Here's what its inventor had to say about it:

"It proved to be completely inactive in all of the test systems [Dr Sartorelli] employed. In my laboratory I found AZT incapable of inhibiting the growth of Jensen sarcoma cells in vitro at very high concentrations. Thus, AZT showed no activity as a potential anticancer drug at that time."

In other words, it was shelved as an anticancer drug because it was pretty crummy as an anticancer drug. Go figure.

Back to Tocci:

The lone AZT study used to manufacture FDA approval was a shambles. But treatment cost $18,000 a year at the time.

Those two statements don't go together, and have absolutely no relevance to the issue. Moving on.

Certain ARVs, such as Nevirapine/Lamivudine/Zidovudine, also contain the politically approved neurotoxin-carcinogen aspartame.

I have no idea if those drugs "contain" aspartame, but I can say that aspartame is neither a neurotoxin nor a carcinogen, so who cares?

Also, this isn't relevant to the topic either. At this point, Tocci is just running through a series of his misconceptions about health. I know who I won't be visiting next time I need a "holistic healer" (which is never, because they're quacks).

Officially, HIV antibodies (revealed by unreliable tests) are a death sentence. But you can "live with HIV" if you take toxic drugs whose effects, if they kill you, will be blamed on the virus.

Seriously? I have trouble believing even Tocci believes that nonsense. If you die from drug toxicity, it will be blamed on drug toxicity. That's why they do studies like this one that examine AZT and liver function. Because they recognize the dangers.

Authority recommends mandatory HIV testing and flu vaccinations (mercury-laced) for pregnant women: Pregnancy, flu vaccines and flu itself (among numerous other things) give false-positive HIV tests.

Oh boy, he's an antivaccination loon too! Jackpot!

Yes, some of the flu vaccines available contain thimerasol. Not that this matters either, since thimerasol isn't dangerous in these doses. Of course, that link comes from "Authority" (AKA people who know what they're talking about), so I'm sure Tocci would reject it.

As for false positives, a lot of things can conceivably cause them. Which is why any positive HIV test is followed by a confirmatory test. When using the Western Blot confirmation, the false-positive rate in a low prevalence area is about one in 250,000.

Once again, though, this isn't relevant to the topic. Tocci just likes to vomit his ignorance everywhere.

Wait, there's more!

My contact in South Africa doggedly researches HIV/AIDS. She says the millions of HIV-positives there may be false. This, and widespread depletion of CD4 cells, she says, are likely attributable to genetically modified (GM) corn.

GM organisms were introduced to Africa in 1985 as "food aid," coinciding with the onset of AIDS. There was also epidemiological correlation early on with the World Health Organization Smallpox Eradication Program.

Oh boy, he has a "contact" in South Africa (where they shower to avoid HIV) who has an utterly insane idea about corn!

That idea isn't backed up by any research I could find, though I did find this Onion piece about how "Generic Candy Corn Will Give you AIDS." Maybe that's where Tocci is getting his information!

I couldn't find any information about the supposed correlation between corn and AIDS. Probably because there isn't one, but even if there is it hardly matters. Correlation is a far cry from causation.

Getting tired, let's wrap this nonsense up.

Society must thoroughly rethink the HIV/AIDS hypothesis. Please look carefully into this before acting on official pronouncements.

Mr. Tocci clearly doesn't follow his own advice. If he did, then he wouldn't be promoting so many utter falsehoods.

Of course, actually following the science and the massive body of evidence tying HIV to AIDS would be detrimental to Mr. Tocci's quack healing business. And we wouldn't want that, would we?

That's it. Hopefully nobody was too tempted to take medical advice from some "holistic healer" who wrote a letter to the editor of a crummy paper in a small community. But just in case, now you know better.

Fitchburg's Cancer Center: Now with more placebos!

Fitchburg seems to have a pretty good thing in the form of the Simonds-Sinon Regional Cancer Center.

While I don't have any direct experience with it (or cancer, happily), it appears to be a fairly well-respected medical facility. It's been commended by the Commission on Cancer of the American College of Surgeons, which sounds like a pretty good thing.

They've also got a nice linear accelerator on-site for use in radiation therapy. And linear accelerators are cool. Plus, you know, they save lives.

So the cancer center seems to be a pretty good place. Which is what makes their apparent embrace of pseudoscientific bullshit "therapies" so disturbing.

The Sentinel has an article about the cancer center's "Evening of Wellness." I'll quote from it in a moment, but let me just start by saying that whenever someone talks to you about "wellness" it means they're bullshitting you.

Okay, article:

The Fitchburg cancer center offered some types of complimentary [sic] care through a 2007 grant, such as music and art.

HealthAlliance CEO and President Patrick Muldoon announced Thursday night at the center's "Evening of Wellness" that a new donation will help the hospital integrate even more complementary care.

Complementary care refers to art, music, exercise and traditional Eastern therapies in conjunction with traditional medical care administered to cancer patients.

What a second. So "traditional Eastern therapies" basically equals "ancient Chinese medicine," but "traditional medical care" equals scientifically sound and evidence-based modern medical treatments? Man, we're playing fast and loose with the word "traditional!"

No matter... Music and art are great things. They can undoubtedly improve the lives of people with cancer. I don't think anyone has a problem with them being offered. Same goes for exercise. That's just obvious.

"[T]raditional Eastern therapies," on the other hand, are total and utter crap. Neither "traditional" nor "Eastern" is something you should be looking for in your medical care (and yes, the "traditional" term used above to refer to evidence-based medicine is inappropriate).

The current life expectancy in China (where a huge amount of this "traditional" crap comes from) is 73.18 years, and that's with modern medicine. In the US, it's 78.14 years. Yes, please take five years off my life with your dumbass therapies, China!

Of course, at the time most of these "therapies" were made up (and "made up" is the correct way to refer to their creation), the life expectancy was probably closer to 30 or 35. So we're really talking about 40-45 years lower. But why split hairs?

Let's look at a couple of the "complementary" therapies used here. First, a quote:

[Patient Barbara] Patterson also utilized the center's LeBed [sic] exercise program to increase patient's physical strength and immune systems. The therapeutic exercise focuses on movement and dance for women with breast cancer.

"I was just coming out of treatment," she said. "It (exercise programs) opens your lymphatic glands and gets you moving. A lot of breast cancer patients can develop lymphedema."

Hmmm...

I wasn't familiar with the Lebed program, but here's its website. I recommend you watch the video on the front page. As you can see, it appears to be a low-impact dance program. Which may or may not involve blowing bubbles.

Now, Ms. Patterson is right. Lymphedema can be caused by radiation therapy. Furthermore, light exercise is a pretty decent treatment. So we're all good.

But what's this crap about "increas[ing]... immune systems"? I assume it's the reporter's own little touch, since as far as I can tell not even the Lebed people make that claim. They do say it increases "femininity" right after saying it was designed "for women and men," which is a little strange.

Incidentally, much like talking about "wellness," anyone talking about "strengthening the immune system" is at least 99% likely to be bullshitting you.

Anyway, while the Lebed method seems a little odd, I have no problem with it. Hell, it's just a dance class. It even has at least one study (pdf) on it published in a peer-reviewed journal! Sure, it's not a very well-done study (they do admit to some of the limitations in the study itself), but it does suggest that the program has some quality-of-life benefits, even if the actual medical benefits are not well-proven. So again, no worries!

Man, what am I so annoyed about then?

Oh yeah, this:

Dr. Betsy Burbank , who will offer acupuncture to patients at the center in the fall, was the night's guest speaker.

"Science is just catching with what you already know deep in your bones," Burbank said to gathered patients. "You know these (alternative programs) help your wellness."

Umm, way to throw out the "wellness" bullshit along with making a totally idiotic claim that "science is just catching up"! And offering acupuncture on top of it!

Dr. Burbank, believe it or not, actually is a real doctor. Not an oncologist, mind you, but a family doctor. Which is fine, and no doubt more than qualifies her to perform acupuncture.

On the other hand, I'm about equally qualified to perform acupuncture. Though you may want to give me a chart of where the major nerves are, just so I don't hit anything bad. But seeing as how "real" acupuncturists and people just faking it and inserting needles randomly are equally effective, I think I could do just fine. And since it's not like you actually need a medical license to do it, I think I'm plenty qualified!

Acupuncture is bullshit. It's a big fat placebo, nothing more.

"So what?" you might ask. After all, placebos are powerful things. People do sometimes feel better from them. So what's the harm?

Well, there's actually significant harm. Hopefully it doesn't affect anyone actually being treated at the cancer center. After all, they're getting real medical care in addition to the useless crap.

But offering and, more importantly, promoting the totally absurd practice of acupuncture is a problem for several reasons:

• It diverts resources from actual medicine: For every penny spent on acupuncture and its pseudoscientific brethren, that's one less penny spent on curing cancer. Go ahead, ask me which I think is more important...
• It gives the impression that acupuncture is a valid therapy for cancer: It is not. People at the cancer center get real treatments with real medicines and techniques that have been proven to work. But people not at the cancer center may get the impression that they can go to their local quack acupuncturist, save a few bucks, and treat their cancer cheaply. And die of cancer, because acupuncture doesn't fucking do anything.
• It promotes a lie: Simple morality should suggest that a hospital promoting quackery is not a good thing to do.

There are actually many more reasons, but this post is starting to get pretty long, so I won't go into them just now. Suffice it to say that a hospital shouldn't be promoting something that's totally at odds not just with medicine (by which I mean the practice of medicine, not pharmaceuticals), but also at odds with reality!

And it gets worse:

Several patients traveled the corridors of cancer center, watching demonstrations of complementary care, including Reiki and Massage Therapy.

Reiki? Seriously, Reiki? That makes acupuncture look like hardcore science!

Don't know about Reiki? Let me put it in a nutshell for you.

Step 1: Maybe put on some soothing music or something.
Step 2: Wave your hands around on and over somebody's body.
Step 3: Claim you're moving their aura or "energy field" around.
Step 4: Maybe get a placebo effect if you're lucky.

Whoopdy-doo! That's Reiki. One of the most inane and ridiculous of all the pseudoscientific gibberish out there. So bad I don't even really feel the need to debunk it. If its idiocy isn't obvious to you, you're probably not reading this.

As for massage therapy... well, who doesn't like a good massage? It's not going to cure your cancer, but no doubt it feels quite nice.

Look, cancer center people. I know you mean well, and probably think what you're doing is noble. In general, it actually is pretty noble. But not the alternative medicine shit! It's exploiting the gullibility of people who are already suffering enough, dammit.

There are a lot of things you can do to improve the lives of cancer patients. The arts and exercise classes are good, why not expand them? I'm sure they could always be better. You don't need stupid "therapies" like acupuncture and Reiki (and who knows what else!) that purport to help without actually doing a damn thing. Your doctors deserve the credit when they heal someone, but at least a few people are going to walk away truly thinking that these placebo therapies actually cured them. Not because they did, but because these lies have a nasty tendency of fooling people. Even doctors, apparently.

You're better than that, cancer center. Ditch the pseudoscientific nonsense and just work on helping people with cancer!