User:Postpostmod/sandbox

I can't imagine any way of accurately communicating the undisputed facts about death threats being issued to researchers without "inspiring" normal people to be appalled at the criminal behavior. Can you? IMO the only way to prevent the encyclopedia from "inspiring" this normal reaction is to censor it outright so that readers do not learn the facts. WhatamIdoing (talk) 18:34, 3 April 2012 (UTC)

Hi folks, Sheesh. I had hoped to avoid bad-mouthing Dr. Steere. In my view, the main reason not to repeat the accusations against the patients in Wikipedia is simply that they were reported in a piece of "creative" non-fiction which is obviously very biased toward propagating the idea that Steere is both a hero and an innocent victim of crazy people. But you won't read his papers; you're ignoring the evidence that he's not trustworthy as a scientist. I don't think he knows what he's doing. I think doctors were begging him for a test and cure, and he obliged them. Trouble is, the test is badly inaccurate, and the cure doesn't work.

This is probably too long to retain your full attention (did you read Nicholas Carr's The Shallows?). But I think it's false economy to make things simpler than they really are.

WhatamIdoing,

You refer to "undisputed facts". The protests are a matter of public record. But the death threats? Not so much. How would one go about refuting Steere's accusation against the patients? the idea that the death threats were "multiple" and "serious", as you say above, is not supported by physical evidence. Only the one email was shown to Grann, and since no one investigated where it came from, it is essentially a nasty email from an anonymous source. The "multiple" idea is mere assertion, from Dr. Steere, and his PR agent who was paid to say so, and to get it in the press.

I agree, I wouldn't like to get such an email. (Although I did once find a dead rat on my doorstep after displeasing a former employee who came from Siciliy, and I did wonder for a second - only rat I've seen in the 20 years I've lived here. But I didn't call the cops or the press - I just told myself not to be melodramatic, and moved on with my life. :-) )

I certainly deplore the nasty, illegal, disgusting, reprehensible, email. I didn't send it. No one should send such a thing to Dr. Steere, even if their health were permanently damaged by an untreated neurotropic spirochetal infection, after their doctor assured them that their negative test was very accurate, and that they had incurable fibromyalgia, CFS/ME, depression, etc., instead. I didn't do the public protests either, but I think it's a good moral act to perform them. How else are innocent children, nature-lovers, and gardening grandmothers to be protected from the same fate as the patient in PMID 17429088? There's also no evidence presented of "stalking", unless it's the kind in Pesky's user signoff.

I'm sure the hiring of the rent-a-cops, if it happened, was a lot cheaper than the PR agency. There's something called a "pseudo-event" that wouldn't seem atypical of Steere.

If you would just critically read the few papers I've referenced, you could see that I'm neither ill-informed, vengeful, nor unduly internet-armed, as the latest cliche goes. (armed, as in "armed and dangerous?" Kind of like "hordes", as in "Mongol hordes". It's all there on PubMed. I'm a bit shocked by the cavalier attitude toward fact-checking at WP, especially from a PhD.

Finally, I agree with you 100% that a normal person would be "appalled at the criminal behavior". That's what I said above, that your reaction is typical. Therefore, the Grann article, and Wikipedia's description of it as if it were factual, is terribly prejudicial against the patients, and will distract both "normal people" and their family doctors from realizing that LD is both very serious, and very under-diagnosed, contrary to Steere's disease model. I can't tell you how many children I see playing in the grass in shorts and flip-flops, in this highly endemic area. They all wear bike helmets, though. Safety is a matter of education.

Axl, a couple of factual notes: I didn't mention any article from 2009. And I never used the word "unreliable", although your putting it in quotes makes it look like you think I did. I don't like to nit-pick, but it's not too reassuring on the fact-checking level.

However, I did imply that the Grann article is not an appropriate source. This is because it is in a magazine, which must be considered on a contextual basis, according to WP:RS. The prose is too overwrought to reassure us that it's an objective report, rather than a bid to entertain via a sensational human interest story. Magazines have to sell copies.

Regarding purple prose, I realized I should not use any slang expressions here, because it might not mean the same thing in other countries as it does in the US. I'll give you an example of what I mean about the tone of the prose:

You said:

"From the first reference:-

"[H]ordes of patients had started to stalk him. They showed up at his public engagements, holding signs that read "How many more will you kill?" and "Steer Clear of Steere!" They depicted him in the media as a demon, worse than the spirochetes, the tick-borne bacteria that they claimed inhabited their bodies.... Egged on by advocacy groups, they infected his sterile world, trying to destroy his reputation and career."

The reference does not imply that these "hordes of patients" are a minority. If anything, Wikipedia's article avoids such value-laden terms. Axl ¤ [Talk] 8:21 am, 2 April 2012, last Monday (4 days ago) (UTC−4)"

I agree with you that Wikipedia avoids such value-laden terms. Furthermore I think it's right to do so.

Could you tell me in your own words what you think the purpose of that rule is?

In other words, if it's too "value-laden" for Wikipedia, why are we accepting a magazine article that uses such language, as if it's a factual report?

If anything, MastCell's summary of it dignifies it beyond its origin. I think maybe media-savvy "normal people" who don't have a stake in advocating for "mainstream medicine right or wrong", on seeing the florid prose in the original, might take it with a grain of salt, especially once the PR agent is mentioned. I didn't see Grann's article until I after I had fact-checked Steere's work, and therefore knew that he's not a trustworthy source. So I can't say how I would have responded. I tend to stand up for the powerless against the powerful, though; I figure the powerful can take care of themselves, almost by definition. I hope I would have asked, Gee, what did this man do to these sick people? And then followed up on it.

Instead, I figured it out in 2007 after having a patient under daily observation for 6 years. Something was obviously terribly wrong, and the doctors had no clue. When he started having seizures, I took it into my own hands, and researched it. Three days later, I had lined up a doctor to order a Western blots from Stoney Brook with ALL BANDS REPORTED. The patient had several positive, specific bands, although his ELISA was under the cutoff. Needless to say, after the testing fiasco, which Steere originated, I wasn't inclined to believe him regarding treatment and prognosis. If the internet hadn't existed, he might be dead by now. Instead, we're leaving Sunday on a bird-watching trip to Arizona.

Best wishes despite our differences, ;-), Postpostmod (talk) 21:47, 6 April 2012 (UTC)

MastCell, I don't know what to say. You have seen evidence that Steere is not reliable, but instead of pursuing it further, and at least refraining from repeating his accusations against the patients, you continue to push his POV. You stopped talking to me when we were getting too close to your realizing that the patients (except for the death-threat one) were justified. Presumably because you put reputation ahead of all else, including the facts. I can see it's practical to do that, in general, for the purposes of patrolling Wikipedia - but there are exceptions to the rule. And this should be one of them.

Well, that's quite enough. I'm off to Arizona to bird the famous San Pedro Reserve and Ramsey Canyon. Along with my companion, who has been snatched from the ravaging maw of the hordes of angry spirochetes. See how silly that sounds? But I know you're doing the best you can, as is Dr. Steere. Sometimes we say about a scientist that "he just doesn't have it", as in the right stuff. It must be a difficult life for those who get themselves into a powerful position and then don't have the talent to back it up.

Best wishes for a healthy life, Sincerely, Postpostmod (talk) 21:47, 6 April 2012 (UTC)

Other controversies:

pandas and pans: http://intramural.nimh.nih.gov/pdn/web.htm

http://www.nytimes.com/2005/05/22/magazine/22OCD.html?pagewanted=all
Hi, MC, I'm glad to hear you're not wedded to the Grann article.  Are you wedded to the language of death threats, stalking, etc? I think the evidence for these crimes is too thin. Especially considering that Steere hired a PR agent to get stories favorable to his image, into the press.  I believe the part about the protests; that's been reported independently, several times. There are witnesses.  Therefore, I think it's fine to say in the article that there have been patient protests.  Did you read the NYT article I suggested, by staff writer David France? It's in the actual newspaper, and so is presumably subject to stricter journalistic criteria,  than a human interest story by a free-lancer in the Magazine, which has more of an entertainment function. I don't think there's much difference in staleness between a 1999 and a 2001 article, in 2012.  Or maybe we could have them both in there, under the Media heading instead of by themselves in their own section.  Then we aren't distracting people from the real issues with a dramatic and juicy headline. 

Hi, to all of you at WP:MED. Thanks so much for all the good work you do. It's encouraging to see this kind of pro bono service from the medical community. 

I need some help. In some parts of the Lyme disease (LD) article, patients and caregivers are blamed for the difficulties introduced by the LD controversy. I don't think that's a good policy, for either the patients or the medical field. I've shown previously in the LD discussion page, and elsewhere (diffs upon request, or see my user contributions) that the patients' complaints are justified by demonstrable and consequential errors in the mainstream science, that so far have resisted the usual self-correction process that keeps medical science moving forward. I'm not suggesting that we describe in detail the evidence that the science is bad, just that we remove the biased assumption that the patients MUST be either wrong or badly motivated. 

I wonder if there's anyone at WP:MED who would be willing to collaborate in editing the article so as to correct for the (understandable) bias of the medical community against the patients and caregivers.. I don't mean to introduce a bias against the doctors, even those who have originated and propagated the regrettable errors. 

I'm not "editing boldly" in this situation, because the debate is so polarized that even good edits might be construed as an attack on the article by "patient advocates". I've decided to be a single-issue editor so far, because as a scientist I don't feel comfortable passing along opinions that I haven't personally verified by checking the science in the primary literature. I'd be glad to help check science in other controversial fields on request, though - it's been intriguing following the chain of evidence back to its origins, and not as laborious as one might think, thanks to Pubmed. 

I do understand WP policies, including MEDRS, SYN, and OR. 

Thanks for your attention, best wishes, Postpostmod (talk) 12:25, 1 April 2012 (UTC)

Hi Doc, thanks for joining in. And hi again, Axl. I'll break this up for easy reading. 

The paragraph Axl identified is the main thing I have in mind. The problem isn't about references. 

I think It's unseemly to give encyclopedic status to such emotionally loaded material. We don't have tear-jerking stories from patients in the article, though there are plenty in the press. 

There are several emotional rants denigrating Lyme patients in the medical journals. 

And there are many factual descriptions of patient pain and disability in the medical journals. 

We need to write about the controversy, it's part of the subject. People have strong feelings about it. But there's no reason for us to actively provoke emotional reactions in the reader. 

Could we just remove the problem paragraph - the ref is from 2001, anyway - and make sure it isn't replaced by something worse? 

There's at least one other place I think needs some tweaking, but let's leave that out for now.

In brief, I'm asking that the article refrain from dissing the patients.  ;-). 

Thanks for your time, best wishes, Postpostmod (talk) 01:14, 2 April 2012 (UTC)

Sorry, I didn't mean to pump up anybody's adrenaline. But it does show why it's not a good idea to use such colorful language in an encyclopedia. It's kind of like "death tax" and "death panel": generates lots of heat, not much light. The purple prose is the main thing that makes the Grann article suspect as a source, in my view. Along with the fact that Steere hired a PR agent to get himself into the press (see the article - it's kind of buried in there, after the quote from Polly Murray, who discovered the cluster of patients in Lyme and called in the CDC).

If we want to have a media article in there about the controversy, how about the article published in the actual NYT (not the magazine), [here]? It's more informative about the cause of the controversy, and doesn't malign either the patients or Dr. Steere. It does treats Steere, like the patients, as fallable, albeit highly influential. Maybe that's a good thing. But then, I'd think so; I'm a democrat. ;-)

It doesn't seem like anyone's interested in why the science remains under scrutiny, particularly the current diagnostic testing scheme. I admit I'm puzzled by the lack of interest in this question. To me, it's the most interesting part of the subject - the rest of it is all hand-waving and hearsay. If anyone else would like to exercise due diligence, the papers about the testing I discussed with MastCell are PMID 18532885 last diff in thread and PMID 8903216 last diff). The one on the LD talk page is PMID 17429088 [http://en.wikipedia.org/w/index.php?title=User_talk:MastCell&diff=prev&oldid=443400654| last diff. And the one I was going to do next is Jiang et al. 2010 PMID 21112481, last diff, which presents the Chinese CDC's independently derived criteria for Western blot analysis. You don't have to take my word for any of this, though - just get the papers and think about what the data really show, and don't show. If the conclusions aren't supported by the rest of the paper, that's a problem, in science if not in Wikipedia.

Hi, MC, I'm glad to hear you're not wedded to the Grann article.  Are you wedded to the language of death threats, stalking, etc? I think the evidence for these crimes is too thin. Especially considering that Steere hired a PR agent to get stories favorable to his image, into the press.  I believe the part about the protests; that's been reported independently, several times. There are witnesses.  Therefore, I think it's fine to say in the article that there have been patient protests.  Did you read the NYT article I suggested, by staff writer David France? It's in the actual newspaper, and so is presumably subject to stricter journalistic criteria,  than a human interest story by a free-lancer in the Magazine, which has more of an entertainment function. I don't think there's much difference in staleness between a 1999 and a 2001 article, in 2012.  Or maybe we could have them both in there, under the Media heading instead of by themselves in their own section.  Then we aren't distracting people from the real issues with a dramatic and juicy headline.