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.

Locals officials scared of transgendered people

Sometimes you see a headline and just know that the story that it goes with is going to be chock-full of stupid. Today we have a fine instance of that in Bill to protect transgendered people draws mixed response.

The story itself centers around a bill (I assume it's HB1722, though the story neglects to identify it) that would have two parts, as explained quite succinctly by the Human Rights Campaign.

This bill would (a) expand existing hate crimes laws to cover crimes based on gender identity or expression and (b) expand existing anti-discrimination laws to prohibit discrimination in employment, places of public accommodation, real estate, and education based on gender identity or expression.

I'm not a fan of hate crimes legislation, but this doesn't seem too crazy. The hate crimes laws exist whether or not I like them, and as long as they exist they might as well cover all applicable groups.

But even if I were opposed to it due to the hate crimes stuff, it's easy to get behind the anti-discrimination stuff.

Well, easy for me anyway.

It's not so easy for Groton state representative Robert Hargraves:

Opponents point specifically to one aspect of the bill that would allow men who self-identify as women to use women's bathrooms and locker rooms, and vice versa.

"It gives license to perverts to go into ladies' rooms," state Rep. Robert Hargraves, R-Groton, said. "I have a problem with that. I have two daughters and six granddaughters, and this is bull-[shit]."

Do you use that potty-mouth around your granddaughters, Robert? For shame!

But let's assume he's right, and that transgendered people (or "perverts," if you're as dumb as Hargraves) could use the bathrooms of whatever sex they identify as. I suspect--and hope--that this is in fact the case. But so what?

I've used a lot of co-ed bathrooms in my short life. Yet, despite being in a bathroom with members of the opposite sex, I somehow refrained from showing them my junk. Remarkably, the women in these bathrooms also managed to avoid flashing their vaginas at me. I guess maybe I could have stuck my head under a stall door or something, but bathroom floors are yucky.

Does Hargraves think that women's restrooms are full of naked women lounging about? Probably. He seems to get most of his ideas about transgendered people from old Bugs Bunny cartoons, after all:

"What this does is, it gives men the chance to put a couple grapefruits in their chest, shave their legs, put on a little lipstick and a skirt, and go into the ladies' room," he said. "To me, any man that wants to do that is a pervert."

I suspect Hargraves has never seen a human breast. They only resemble grapefruit in poorly-written internet erotica, Robert. Additionally, they do not feel like bags of sand.

Look, this is pretty simple. If someone self-identifies as a woman and therefore wants to use the womens' restroom, there's no reason they can't. Womens' restrooms are fully capable of handling even the most manly man's leavings.

But what if the person self-identifying as a woman is just doing so in order to get into the womens' room to molest women, like Hargraves imagines happens all the time? Well, then they're molesting people and should be arrested and prosecuted. Of course, if they're going into the womens' restroom in order to molest women, then they're probably not going to bother with the comically inept crossdressing.

And, as Jen Benson (the only local politician in this article with any brains) points out, there is nothing keeping people from going into whatever restroom they want as it is. So prohibiting discrimination against transgendered people really won't have much effect on bathrooms. The bathroom stuff is even debunked elsewhere in the S&E article, where it mentions that 13 other states already do this and haven't had problems.

It's notable that while Hargraves seems to be very concerned about women being harassed by "perverts," he doesn't seem at all concerned about the harassment a transgendered person may experience for using their chromosomally-dictated bathroom. I wonder how he'd respond if a man dressed as a woman pulled up at the stall next to him.

Ah, I'm sure it wouldn't bother him. He's clearly an enlightened guy.

But not everyone is so enlightened, and finding a safe bathroom to use is a big enough issue for transgendered people that the Transgender Law Center even publishes the wonderfully-named Peeing in Peace Resource Guide, which is partly devoted to giving advice on how to deal with harassment and assault.

It doesn't take all that much imagination to recognize that a man dressed as a woman takes a not-insignificant risk any time they step into a mens' room. Especially if they can convincingly pass as a woman. It works the same in the other direction, except women are probably less likely to fly into a homophobic rage and physically assault a woman dressed as a man.

Hargraves isn't the only local dumbass, of course. Dennis Rosa wants to get in on the act, too.

But state Rep. Dennis Rosa, D-Leominster, said Friday he opposes the bill.

It may not openly promote criminal activity, Rosa said, but it encourages it.

"If someone is close to the edge, by encouraging it, you're adding to the problem and pushing them over," Rosa said. "That could be a real concern, because you're talking about people who are possibly having psychological problems because they're struggling with who they are."

I've read this a few times now, and for the life of me I can't figure out what Rosa is talking about. Is he freaked out about bathroom stuff for no reason too? Does he think being transgendered itself is criminal? Or does he think that transgendered people are somehow on the "edge" of becoming serial killers?

And how does he think their possible "psychological problems" will be helped by denying transgendered people equal rights? Perhaps if we learned a bit more about his feelings towards transgendered people we might gain some insight...

Rosa said the bill would "legitimize incorrect behavior."

"I'm for equal rights, but this is taking it way too far," he said.

Yep, that cleared it up.

Rosa is most assuredly not for equal rights. At least not for those damn transgendered people and their "incorrect behavior." I guess being a bigoted sack of shit is "correct behavior."

Clearly, his opposition doesn't really have anything to do with the fear of bathroom shenanigans. No, that's not really what worries Rosa (or Hargraves, I'd argue). They just think transgendered people are icky. I'd wager they don't want them in either bathroom.

Unfortunately for non-existent transgendered bathroom goblins (and also for perfectly nice transgendered people who just don't want to be discriminated against), Rosa and Hargraves will fight this bill:

Hargraves said he will vocalize his opposition to the bill.

"I may not use the word pervert on the house floor, but I'll let people know how I feel," he said.

But Hargraves may be one of the few willing to state his opinion openly, according to Rosa.

"If you didn't ask me the question, I probably wouldn't talk about this bill until it was time to vote on it, and then I'd just vote against it," the first-term representative said. "I think most legislators are hush-hush about it."

Rosa said at least one colleague told him in private he opposed the bill, but would not state his opposition publicly.

"My gut feeling is that there's a silent majority against it, but no one seems to really want to talk about it," he said.

Gee, why could it be that people don't want to talk about it?

Maybe it's because even assholes like Hargraves and Rosa realize on some level that being a bigot isn't really considered all that cool these days. Best to keep that stuff to yourselves, guys!

See, if you're willing to endorse discrimination against a whole group of people just because you're scared of having to pee next to a "pervert," that's actually really terrible. If I were that stupid, I'd try to keep it a secret too.

So, I actually have to applaud the Sentinel for running this story and letting the world know just what kind of morons Hargraves and Rosa are.

Also, this will be fun to refer back to when Hargraves shows up in a ladies' room with pomegranates under his shirt in a few months.

Liars for Kurt Hayes!

So there's this whole kerfuffle going on in the Benson/Hayes race in the 37th district. I was going to write about it last night, but I got distracted. I didn't really feel like it anyway.

However, today I discovered some dipshit commenter lying about Benson in a comment on my earlier post about Kurt Hayes. You have him/her to thank for this post. (*)

See, I'm not heavily invested in this race. I wrote about it before primarily because Hayes' secret agenda is disturbing and deserved to be publicized a bit. I will write about it today because I really, really hate liars. And there are a lot of them involved in all this.

Okay, on to business.

There have been two articles in the Worcester Telegram lately about a conflict between the Benson & Hayes camps.

The first was titled simply GOP group’s tactics blasted. Here's the gist:

At issue is a House bill that would take $450 million from the state’s stabilization fund, divide it up and return to the 352 cities and towns. It would be a one-time transfer, and communities would have to function without it the following year.

Ms. Benson said the Republican Town Committee in Shirley, a district town, released a statement on its Web site claiming that she is opposed to returning the money to the cities and towns. Mike Mackin, her campaign manager, said the Shirley town committee took a statement made at a debate, cut it in half, and fabricated her stance on returning the money.

“They knowingly made it up. I guess that’s what you do when you can’t win based on an honest discussion of issues,” Mr. Mackin said.

Seriously, this was a dumb thing to complain about. The Shirley RTC clearly has a Capuchin monkey of less-than-average intelligence running its website. It could have been ignored and we would have all been better off. Alas, this was not to be, and now everyone's pissing me off and I'm writing a long post about it. Grr!

Here's the offending bit from the Shirley RTC website:

Jen Benson with her elitist and condescending attitude, [Sic] saying in one instance that she was not clear on releasing the 450 million to [Sic] then later supporting it saying that BEACON HILL said the local officials were not smart enough to realize this was a one time increase…

Blah blah blah "elitist" blah blah blah bullshit. I can't even put in all the [Sic]s that deserves, because you wouldn't be able to read it.

So this barely-literate thing above is an issue of contention. Because it's a lie. You can see what Benson said for yourself, though it's not exactly exciting viewing:



Basically yeah, she supports releasing the money. Pretty clear.

What was Kurt Hayes' response?

Mr. Hayes said last night he had no idea what Ms. Benson is talking about, and has no input into what goes on the Shirley Republican Town Committee Web site. He said he was the driving force to get the bill to give the money to communities placed as referendums on local ballots in all six district towns.

“She has stated that she is in support of it, but I’ve not seen any evidence of that,” he said.

Apparently that guy sitting right next to Benson in the clip above wasn't Kurt Hayes. Or maybe he didn't bother paying attention to what she was saying. That would explain why he has no idea what's going on. Was he high, maybe? That might explain why he thinks that Benson stating she's in support of it doesn't count as "evidence" that she supports it.

Or he's just a liar.

That article was later followed by the aptly-titled State Republicans weigh in to bolster attack on Benson. Here's the attack:

[State GOP douchewad Barney] Keller contended that Ms. Benson has said in videotaped forums that some legislators are against the one-time transfer because the money would be gone the next year, yet could be figured into operating budgets for future years. He said she needs to reveal which legislators took this position.

What?

What the hell kind of lame attack is that? They're whining that Benson wasn't specific enough about something she said? Something that's totally unrelated to the issue at hand, which is that the Shirley RTC was lying about her stance on releasing that money to local communities.

Oh, it's not really an attack at all. It's a "we got caught lying so this is how we'll cover our asses" move.

“Jen Benson should immediately disclose which legislators she talked with (who) don’t trust cities and towns to handle receiving millions of dollars in local aid. The public deserves to know which of our legislators don’t trust our communities to handle tax dollars. If she will not disclose who she has spoken with, then she should apologize for her outrageous negative attack on Kurt Hayes,” Mr. Keller said.

Oh? Why the fuck should she disclose this to you? So you can run attack ads against them? So you can twist their concerns about temporarily inflated budgets around into not "not trusting our communities"?

Because it's not like it matters. And it's not like it's the issue. Way to try to change the topic! How about condemning the lies of your own party? No? Didn't think so.

The Shirley folks have a little update about all this. Allow me to reprint it for you!

NOTE; The Shirley Republican Town Committee would like to clarify one portion of our endorsement and comment

1. We are deeply appreciative of the Benson team taking time in their busy election effort to review our web site.

Sarcasm? All well and good if this were on a blog or something. But on the official Shirley Republican Town Committee website? Not classy.

2. The WORCESTER T/G [Sic] indicated they tried to contact the "Chair, who was unavailable for comment" [Sic] A false statement as the chair was available on 28 October 2008, [Sic] all evening when the contact was supposed to have been made.

Damn that liberal media!

Wait a second, where does that quote come from? The article from the 29th only says: "Ms. Dumont could not be reached last night."

Maybe it was updated after the fact? Someone with a hard copy of the paper want to check that out? Or maybe it's just another lie...

3. We are providing a link OFF OF Ms. Benson's Web site, EDITED by the Benson people. The readers may go to that link and view exactly what Ms. Benson said and did not say and like all people desiring to be educated voters, make up their own mind based on Ms. Benson's own words http://jenbenson.org/lottery.html.

Listen, people. If you're going to run a website, learn to write. The link is not "OFF OF" Benson's site. It's on Benson's site. It's only "EDITED" in the sense that it's a segment of the debate instead of the whole entire thing, which nobody would ever bother to watch anyway because it would be painfully boring.

I think the second sentence of that part was written by a Nigerian 419 scammer. Or Jerome Corsi.

4. We also note that Team Benson did not provide a full tape of the Shirley Debate or the two questions in the Lunenburg Debate referencing the lottery funds in general. Nor did they respond to Bensons [Sic] endorsement of expending taxpayer funds on illegal's [Sic] nor any of the other funds she desires to expend and the spending she wants to expand in the current Massachusetts fiscal crisis. The RTC STAND behinds [Sic] our endorsement of all three candidates as listed below, for the reasons listed below;

Why the hell should team Benson provide you assholes with anything? They could give you every bit of footage out there and you'd just claim she was holding something back.

You're the people making the ridiculous claim. You're the ones who have to back it up. If you can't back it up, I'll just keep calling you liars. Because you're liars.

Also, learn how to fucking punctuate.

Let's round up all the liars!

• First, there was my dumb commenter.
• Second, there was the Shirley Republican Town Committee.
• Third, Kurt Hayes is either a liar or just incapable of paying attention to what his opponent was saying during the debate (so a moron).
• Fourth, that Keller guy from the state GOP didn't so much lie as try to draw attention away from the lies already being told by whining about something totally unrelated. Still gets listed for being an accomplice.

That's a lot of liars! And they all support Kurt Hayes, the choice of lying assholes everywhere!




*Note to dipshit commenters: This isn't Save Fitchburg. I have a very low tolerance for liars and idiots. I very rarely delete comments, but will do so without hesitation if you really piss me off. More likely I'll just make fun of you for being an idiot. Either way, don't waste your time. This picture is all you get.


**Note to non-dipshit commenters: I love you guys. Thumbs up for you!