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.

State Senatorial Candidate Website Reviews!

Apparently, there was a debate tonight between Jennifer Flanagan and Brian Knuuttila, who are both running for state senate. Well, I'm not one for fancy debates or driving to Sterling to witness said fancy debates, but I am one to look over the candidates' websites and make fun of them. So let's do that now!

In case you're not aware, there's a contest in the works to replace the retiring Robert Antonioni as State Senator. Antonioni's a pretty good guy, so good luck to him in whatever he moves on to!

In the meantime, we have this weird little race to deal with. Two candidates are vying for his seat, and I don't really know all that much about either of them. What can I say, the site is called Progressive Fitchburg, and neither is from Fitchburg. There's only so much time in the day, people.

No problem though, they both have websites, and we can simply judge them that way!

Going in alphabetical order...

Jennifer Flanagan: www.jenflanagan.com

I'll tell you right off the bat, Flanagan's got an advantage here. Not only does she have this site, she also has a second site here for her State Rep. stuff and her official mass.gov page is the top result if you Google for her name. So she's easy to find. But that could be a bad thing if what she has to say sucks!

To be fair, I'm only going to deal with her campaign site. At first glance it looks pretty professional. It uses the totally cliched "make your site look as much like the American flag as possible" style of website design, but doesn't totally pound you over the head with it. Just a dull throb.

The front page is pretty dull. Mostly it's a press release. The main content is primarily the News page replicated here. Plus there's a newsletter signup thingy and ways to give her money. Uninspiring, but I can live with that.

Now to the more interesting pages! Our first one is simply called Jennifer! Hello Jennifer! Clicking on that link almost makes me feel like we're on a first name basis!

Actually, the page sort of has three parts to it, we're just dumped to the main "Get to Know Jen" part, which has this totally subtle picture on it.


Oh hello, Sen. Antonioni! I almost didn't see you there!

Also hello lady to Jennifer's right (our left)! I don't actually know who you are. Maybe I should, maybe not. Regardless, Sen. Antonioni is looking pretty sharp. I sort of wonder what he's looking at. Some tasty hors d'oeuvres perhaps? Hot chick in a bikini? Someone he's planning to murder? Hard to say, but maybe we'll get lucky and another photo will tell us? Unlikely.

From this page we're linked to Accomplishments. Yay, important issues! Here we find important details about my new friend Jennifer's work as a State Rep.

This is where things go horribly, horribly wrong.

Look, I know the subheading is "legislation filed" and that if you read the whole blurb it's about legislation she's working on to punish those who harbor minors (to protect runaways and so forth, I suppose). That doesn't change the fact that if you quickly skim her accomplishments it appears that the one she's most proud of is HARBORING A MINOR. Not good!

She also has FAILURE TO STOP FOR POLICE OFFICER LEGISLATION further down, which at least has that "legislation" at the end, but still is not at all what you want to have as the bolded, all-caps part of your accomplishments!

There's a lot on that page though, and much of it is good. There's also this, which I find utterly baffling:

MORATORIUM ON INTERNET HUNTING: CHAPTER 83 OF THE ACTS OF 2007 Aligned Massachusetts with 22 other states to ban the hunting of live animals through the Internet and establish a fine of up t [sic] $2,500 or imprisonment for 2½ years if a person is found to have participated in Internet hunting.

Huh? You can hunt live animals through the internet? How the fuck does that work? A webcam mounted to a rifle? Is it even a real thing, or are we preparing for a post-Skynet dystopia in which killer robots are trying to hunt us using the internet somehow and we're hoping this law keeps them at bay?

If it's the former, I must chide my new friend Jennifer for legislating about stupid things. If the latter, I applaud her foresight!

On to the Endorsements page!

Actually, no. Let's not bother. Just go read it if you really care. About the only endorsement that matters is the one from Antonioni, which we'd already figured out from the picture up above.

So instead we'll go to the Our Community page. It appears the main purpose of this page is to provide a map showing the district, and therefore letting people know that if they live in one of those towns they can vote for her. I suppose that's useful. Also, I learned that Clinton is apparently very tiny. Who knew?

The News page is what you'd mostly expect. Press releases and so forth. We already saw the main one on the front page. It also links to Photos on a big bloaty Javascript-ridden page that slows down my browser and annoys me just a bit. Nice effect and all, but I could live without it.

Here's a picture where Jennifer is being arrested by the very minor she was harboring! Citizen's arrests do work!


Perhaps as part of her plea bargain with the arresting pre-adolescent, we next find the odd Kid's Corner page. Apparently kids can vote now?

This page hosts what I assume to be Orson Welles' long-lost masterpiece of zombie filmmaking, "Citizen Brain: Feeding on American Democracy."

Actually, it appears to be about a kid named Vince whose brain escapes his head and starts menacing him while he's trying to play video games. It's creepy. Or at least the first 45 seconds or so are creepy. That was about all I could stomach.


The last page is just a Contact page. Nothing notable there.

Conclusion: It's a nice looking website, with a good long list of accomplishments (even if some of them are baffling). Unfortunately, it doesn't really look forward much. Lots of talk about what she has done, but very little about what she will do in the future. Still, nothing about it was totally ridiculous. Except for the zombie brain (which I assume is also a cannibal).

Now on to her competition!

Brian Knuuttila: brianforsenate.com

Well, it's obvious who spent more on their website here. Mr. Knuuttila's site looks like it hails back from 1995 or so. I really recommend you go visit it, because the magic of the marquee scrolling doodad at the top can't be effectively conveyed in my screenshot.

On the plus side, when I first visited the site it had blinking text too, and that seems to be gone now, so things are improving! In fact, it says it was last updated today! (It also says it's only had 178 visitors, let's get that number up!)

Anyway, we actually have a pretty busy front page. First off, we have his slogan, which is honestly pretty cool: "No matter how you say Knuuttila, it means good government"

So he's got a sense of humor.

Also, he appears to be a very literal tree-hugger!

Wondering what his site is all about? Wonder no more, he tells you right on the front page!

The website is intended as a way for me to express my views and qualities and a way for you to contact me with thoughts and ideas on how you would like to see your City and Town improve in the future with my support.

As a former State Representative and still very familiar with the issues and needs of our district [sic]. We need new and fresh ideas to bring economic stimulus [sick] to our district and I plan to work hard for you to bring economic stability back to us. I am running for Senate and I am asking for your support. Please contact me with your thoughts and ideas as I promise to respond to you.

Sincerely,
Brian Knuuttila

How nice. Might want to do some proofreading there though, as I actually went light on the [sic]s. (In fairness, Flanagan got some too.)

First page! It's called About Me, which is a little less intimate than "Jennifer." I recommend he change the link title to "Bri-Bri" or some other funny nickname in order to one-up her.

On this page we encounter exactly two images, and both are flags.
These flags are supposed to be waving, but it seems blogger may have killed their rockin' animation. Regardless, it seems clear that Brian is both an American and a Marine.

In fact, as we learn from the "About Me" page, he was not only a Marine, but also a five-term state rep, a Gardner City Councilor, a cop, a firefighter, an attorney, and several other things. Clearly he gets around. Also he has a wife and two kids, so he's apparently heterosexual and capable of impregnating a woman. I'm not sure why these things matter, but politicians seem to like to point them out.

Next we move on to his View Points [sic].

Okay, let's ignore the typo in the fucking link menu and just deal with the substance of the page. It's mainly encapsulated in the bullet points at the top, which is handy!

Nice bullet points! He likes me!

Oddly, the rest of the page seems to veer off from the bullet points, since the headings continuing down the page are (in order): Education, Health Care, Environment, Balanced Budget, Jobs, Affordable Housing, and then a big huge "Honest and Responsible Leadership" at the bottom. All good things, and while the synopses he gives are unfortunately rather vague, it sounds like he has some good priorities.

Next is the News & Events link. Right now it's just four links to various websites with articles about him. Still, we can pass this up just like we would any old "links" page.

On to Endorsements. Okay, I pretty much ignored Flanagan's endorsements because I don't care about endorsements. But I do note that while Flanagan has Mayor Wong on her side, Knuuttila seems to have the lion's share of the city council. What's up with that?

Still, endorsements, meh. Hopefully the next page will be more fun!

Crud, it's a Helpful Links page (though the page title says "Key View Points" for some reason)! Oh well, at least they're helpful. And he has this nice blurb at the top:

Below are some links that I hope will help you. Please let me know if I can add other links that you've found useful.

That's a very nice offer! And he does have a "blogs" section at the very bottom (because nobody respects blogs). Maybe I can make it there!

Aside from that, it's mostly links to city government websites in the district. And you know what I said about links pages just a few paragraphs ago. So we move on...

To Photos 2008! I love a good photos page, and it's nice to know these are all recent photos! Even though they're all laid out in a single horizontal row in order to make a crappy-ass slideshowy thing that will require ridiculous scrolling... bah.

Interestingly, the majority of the photos do not in fact feature Knuuttila himself! Still, here's an awesome one!

Now you might be thinking I'm going to say something rude about how this is the multicultural shot that all political websites must have, just because it has a black man, an Asian, and either two women or one woman and a guy with luxurious long hair.

You are very jaded, my friend.

In fact, I just like the look on that guy's face. It's like he has some sort of really cool secret that he's keeping from the people in his little group there, but that he's sharing with the photographer, and by extension us. Awesome.

Anyway, it's probably better when Knuuttila stays out of the shot, because apparently he has a tendency to point directly at women's breasts...

Note to Brian: Please work on subtlety. Just because Prince Charles can get away with it doesn't mean you can!
Okay, better move away from these photos before things get dirty. What's the next link?

Oh crap, it's Photos!

Look, I like photos as much as anyone. Especially when they're goofy like the ones above. But do we really need to separate out 2008 from all other photos (which are presumably earlier and not from the future)? And seriously, tell me it's not just an excuse to run this one:

Actually, it's a fascinating photo. What part you like most about it depends entirely on who you are.

If you're a big Red Sox fan, it's the World Series trophy. If you're a pedophile, it's the teenage girl in the short skirt. If you're already a big Brian Knuuttila fan, it's Brian Knuuttila. If you're me, it's that awesome surly guy on the right side who looks pissed off at the whole thing. It's a feast for everyone's eyes!

But enough photos already! Let's move on!

Dammit, the final page is just a Contact Me page! I hate those things! Plus it's very limiting!


What if I just want to tell him a joke or ask him where he gets his ties? What do I check then, huh?

Okay, that's it for his site.

Conclusion: Somehow, I find this site both really terrible and very charming. It's probably all the pictures and the warm feeling I get remembering what web design was like in 1995. Still, it doesn't really tell me all that much about what the hell Knuuttila would actually do if he got elected!


VERDICT: Seriously, they both sort of suck. They get the job done, but neither site really tells me anything about what to expect if I vote for these people. They spend all their time focusing on the past and not what they're going to do, which is far more important. Flanagan's site is clearly more professional, but Knuuttila has a better sense of humor. If I were to vote based on websites alone I'd probably go with Flanagan, but neither of them is terribly compelling.