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.

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!

Kurt Hayes' Stealth Agenda

Kurt Hayes is a Republican running for State Rep. in the 37th Middlesex district (which includes parts or all of Shirley, Lunenburg, Lancaster, Harvard, Boxborough, and Acton).

He has a terrible website. Also, for awhile I thought his name was "Kurt Haves" due to some poor design choices on his campaign signs. What more is there to say about him?

Quite a bit, actually. Though I suspect he would prefer it remain quiet.

See, there's a funny thing that happens to Republican candidates in Massachusetts. Since we're among the bluest of the blue states, Republicans have a difficult time getting elected. So they pretend to be "bipartisan" or downplay their conservative views, or run as independents, or try to appear more liberal than they are, or just simply lie. See Mitt Romney for examples of most of the above.

To be fair, Democrats running in red states do a lot of the same kinds of things. But they're not my concern at the moment.

My concern is this Kurt Hayes fellow, his seedy backers, and what he stands for (but doesn't want you to know he stands for).

A few weeks ago I got an email from Jamie Eldridge, the former holder of the seat for which Hayes is running (against Jen Benson). Eldridge is running for State Senate instead. By most accounts, he's a good guy.

It was an interesting email, which I oddly can't find on Eldridge's website. You can see the bulk of it quoted here. I'm not on Eldridge's mailing list, so I guess this was part of an effort to inform area bloggers. I also had a local tipster mention the same thing to me, so mission accomplished!

If you didn't bother to read it, the memo from Eldridge basically goes over how Hayes (and two other Republican candidates) are funded in large part by the despicable MIPAC.

Here's how MIPAC describes itself:

Massachusetts Independent PAC for Working Families, or MIPAC, is dedicated to helping elect candidates at the state legislative level who support pro-family positions, particularly candidates who support traditional marriage and the right of the Massachusetts citizens to vote on this vital issue.

What the hell do "working families" have to do with gay marriage? Beats me!

The important part to note is that MIPAC's entire reason for existing is to promote "pro-family" (more commonly known as "anti-gay") candidates, and to try to get gay marriage banned in Massachusetts. They do this by giving money to candidates, natch. But it's not just through the PAC that they give money (there's a $500 limit for that), as Eldridge pointed out in a nifty chart, the donors to MIPAC also give independently to these candidates. To such a degree that nearly 40% of Hayes' donations come from these out-of-district jerkasses whose defining quality is that they don't like gay people.



It's worth looking over the list of MIPAC expenditures, by the way. You'll find a number of familiar names. Brian Knuuttila, for instance. Guess that was wasted money. You'll also find Dennis Rosa and Guy Glodis on there. It's a handy little list of candidates who MIPAC believes will support their discriminatory agenda.

Of course MIPAC could be wrong to support some of these people, right? Maybe they're actually all very progressive candidates that MIPAC is just hoping to sway with the power of the purse.

Maybe, but that's not the case with Hayes. Hayes filled out a questionnaire for the Massachusetts Family Institute, another anti-gay (also anti-gambling, anti-stem-cell, anti-first-amendment, anti-porn, etc., etc.) group. You can see his responses in pdf form here. I don't recommend it, though, since the morons scanned it upside down.

Here they are flipped over and in image form. Click to embiggen.



The MFI also have a voter guide (also pdf) which boils down those longer responses. Obviously the MFI has more varied concerns than MIPAC, which is pretty straightforward about just being anti-gay. But the first question is the really telling one (though all Hayes' responses are straight along social conservative lines).

If you can't make it out, that first question is:

Should legislators vote yes to allow Massachusetts citizens to vote on a Constitutional Amendment that would define future marriages as between one man and one woman?

... to which Hayes answered "YES" without any further comment.

Of course, what that convoluted question is really asking is "do you oppose gay marriage?" It's just easier to ask it this way, where the respondents can pretend it's about voters' rights or some such bullshit. It's not. It's about whether or not they'll waste everyone's time fighting gay marriage.

So what's the problem? MIPAC can donate to whomever they want. Supporters of their cause can do the same thing. They don't have to live in Hayes' district to support his agenda, after all.

But Hayes' website makes no mention of his massive backing from anti-gay activists. In fact, I couldn't even find a mention of gay marriage anywhere on the site. If you went to his site not knowing his party affiliation, it would probably take you a little while to even figure out he's a Republican. But not only is he a Republican, he's a Republican who toes the conservative line on most social issues. Just another shill.

If that's what you're into, go ahead and vote for the guy (also, if that's what you're into why the hell are you here?). Knock yourself out. But he should at least have the decency to be upfront about his agenda.

I guess it's a good thing he intends to keep his day job even if elected, because I can't imagine people being happy if they voted him in, only to later find out what he's really all about. Better that they just hear it now, isn't it?

So yeah, if you live in that district, consider giving Jen Benson a vote.