LDA Articles
Boy, that LymeNut discussion board gets a little bit wackier every day. Its managers must be following the lead of Iranian mullahs and Chinese Politburo members in defining how to control the media and the message, and how to silence dissidents. LymeNut members are regularly banned. Postings that do not track the party line are edited or deleted with Orwellian efficiency. Quack therapies and quack doctors are relentlessly defended against common sense and common decency.
I suppose that’s why there are so many other discussion boards and Lyme groups today. The Lyme Movement has fragmented into competitive, antagonistic groups with competing messages and methods. Hey, I’m not complaining. Personally, I think it’s great that these nutty people can’t take two steps forward without pushing and shoving like kindergarteners, and trying to trip up each other. It’s an interesting picture to present to reporters and politicians.
What prompted the latest bit of internal strife were a couple of Lyme-related bills in the Maryland legislature. Apparently, both bills are dead right now; dead, apparently because of infighting among the Lymee activists. “Ticked off” about the whole affair, one group felt the need to broadcast an explanation of what happened to the bills. “There has been an incredible amount of misinformation and allegations on LymeNet directed toward NatCapLyme* following the recent hearings.”
Sounds like much of the misinformation is from Miss Barnes; that mysterious Maryland activist who may or may not exist. Even NatCapLyme isn’t too sure since they felt compelled to identify her with three different aliases.
It appears that Lucy Barnes/Tincup/Afterthebiteknew about at least two of these bills before NatCapLyme did. We did not receive any notification on these bills from her or anyone else in the community.
Lucy Barnes/Tincup/Afterthebite, unknown to anybody and with checking with Delegate Pena-Melnyk’s office or NatCapLyme, sent one of the unacceptable versions to Maryland doctors and the ILADS Board.
Another Lyme group associated with Lucy Barnes/Tincup/Afterthebite held a surprise briefing one week before NatCapLyme’s. They even tried secretly to secure the same physician speaker NatCapLyme had engaged.
So her “Grey Eminence” is once again the source of discourse among the Lymees.
The problem for NatCapLyme and other Maryland-based groups is not the local legislative process, the IDSA, Hopkins or the health department, but Lucy Barnes/Tincup/Afterthebite. What are they going to do after having been bit (again) by Maryland’s mysterious madam of mayhem?
At the least, they should find out if bogyman Barnes really heads a Maryland Lyme group that really exists. If not, then she’s just a lone nut talking about her own wants and beliefs. For legislators and politicians this is a fundamental: Who speaks for whom?
Until the Lymees can answer that question they should stay out of the state houses.
*National Capital Lyme & Tick-Borne Disease Association. Addressing recent activity in the Maryland Legislature and discussion about it on the LymeNet Listserv. February 28, 2010.
Posted by Relative Risk at 12:06 0 comments Links to this post
Labels: LDA
I saw this little note posted on the LymeNut forum the other day. It’s from one of the moderators worrying about the fate of a webcast video from the recent IDSA hearing on the treatment guidelines for Lyme disease.
“I want to know if a copy of the video webcast is going to be made available to anyone but IDSA. Copies of it need to be held, so that it does not disappear.”
Why would it disappear? Probably all of the reviewers on the panel have copies for reference. As do a number of reporters. Yet this statement seems emblematic of the Internet-connected nuts who think they are plagued with a permanent infection that limits their social and financial lives to sitting in front of their computers and trolling the Internet for Lyme-related information 18 hours a day.
It reminds me of the Lyme activist who called my house one night and started the conversation with this question: “You’re not taping this are you?” To which I answered, “Ahh, you called me. I don’t pick up the phone with one hand and a tape recorder with the other.”
Yet, it’s common paranoia in LymeLand. They are always worrying about Internet trolls, imagining someone is hacking their computers, searching for their names, reporting their doctors to state licensing boards, and keeping tabs on everything they say and do and plan.
Frankly, I can’t think a more boring thing to do, but perhaps it makes them feel important or powerful if they imagine people are thinking about them and plotting against them. After all, Lyme disease is--to them--a vast conspiracy so there must be conspirators.
Paranoia aside, there’s also the near pathological use by activists of superlatives to describe the doctors who fleece…I mean treat…them. They are always described as “world- renowned,” “experts,” “noted experts,” a “nationally renowned Lyme disease expert,” a “leading Lyme doctor,” a “renowned Lyme expert and medical researcher,” “a leading authority,” “a renowned physician,” “a nationally renowned expert,” and “the world's leading Lyme pediatric specialist.” Their research--which is seldom published, almost never funded by federal agencies, is occasionally conducted in home basements, and is never reproducible--is described as “pioneering work,” and “pioneering research.”
Yet these quacks remain little known to people outside of the activist community and various state prosecutors and medical licensing boards. Their “research” is often paid for by activist organizations, is presented at activist meetings and is “published” in activist newsletters. (But then, so are their legal bills.) So why the superlatives? Why the outrageous accolades? I’m not sure. Maybe the activists and patients do it to make themselves feel better; to imagine associating themselves with someone and something better; simply to flatter; and maybe to lure more patients and members to the Lyme Movement with promises of expert advice and care. Whatever the motives, it’s all still delusion and deceit.
Finally, there are the lies.
It’s hard to find any accurate and honest information about Lyme disease on a Lyme-related website. Aside from spelling “Lyme” correctly, most of the information provided on activist and quack sites is repeatedly, regularly, consistently falsified. I’m thinking specifically of information about the sensitivity and specificity of diagnostic tests, the geographic limits of Lyme disease, the statements of Blumenthal regarding the settlement with the IDSA, and the IDSA’s recent statements about that settlement and the recent re-review of the IDSA treatment guidelines. Many of these activist statementsare easily dismissed with a quick review of the literature or the published statements of Blumenthal and the IDSA. But I guess they expect no one will check, and many of their backers won’t care. Still, a lie is a lie, and one wonders what the harm would be in occasionally admitting, “Yes, that’s true.”
Maybe that’s why right-wing radio and TV are so popular among society’s fringe: it’s the feel-good noise and not the factual basis that matters. The Right focuses on a limited target audience. I guess the Lyme Movement is doing the same, and any reality could only undermine that feel-good, self-righteous focus.
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Posted by Relative Risk at 01:53 0 comments Links to this post
Labels: Anti-science, LDA, Lyme disease
Are these Lyme activists getting desperate? Now they’re paying people to attend their meetings?
Here’s a recent note from one such organization:
Reimbursement for ILADS and LDA conference attendance up to $500 total.
CALDA will reimburse up to $500.00 out-of-pocket expenses for any actively practicing MD, DO, ND, NP or PA in any state to attend the annual conferences put on by the International Lyme and Associated Diseases Society (ILADS) and the Lyme Disease Association (LDA). CALDA grants are limited and are only available to those qualifying professionals who are attending the conferences for the first time.
Most professional society meetings have some travel money for grad students, postdocs, and fellows who are presenting talks and posters. But this sounds like CALDA or LDA or ILADS--well, actually they’re all the same people--are trying to rope in some naïve practitioners who don’t know much about Lyme disease or about Lyme disease activists. It could turn out to be more like an indoctrination than an education for the unlucky recipients of these conference grants.
Personally, I think it would take a lot more than $500 to make the average professional sit through lectures by the likes of Stricker, Johnson, Pat Smith, Joe Burrascano, and the 80-year-old Jones. What could one possible learn from such people? How to get through a licensing board hearing? How to threaten someone with legal action? How to manipulate and intimidate local politicians? How to survive a federal funding bar? How to hide cash payments?
I’m sure on one level it would be entertaining, but $500 isn’t enough money to drag me in.
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Posted by Relative Risk at 01:51 0 comments Links to this post
Blumenthal pleased? Well, that was the whole point: Blum's megalomanical need to appear in the news on an hourly basis, and his obsession with Lyme disease. It's clear from his comments below that he still doesn't understand that "fairness" and other points of view are simply irrelevant to science. The only thing that matters is what can be consistently and independently demonstrated.
Blumenthal pleased with D.C. Lyme hearing
By Lisa
Chamoff
Hartford Courant
Posted: 07/30/2009
Connecticut's attorney general said he felt a hearing in Washington, D.C., on Thursday on Lyme disease treatment guidelines that he helped bring about was "unprecedented" and set a standard for transparency and fairness in crafting medical recommendations.
"It certainly aired diametrically different and sometimes conflicting views and highlighted the stark divide between various sides in the debate," said Attorney General Richard Blumenthal in a phone interview Thursday evening.
[snip]
While Blumenthal didn't attend the invitation-only hearings -- which included testimony from 18 presenters representing varying viewpoints on Lyme disease diagnosis and treatment -- an attorney from his staff was present, and Blumenthal viewed the proceedings through a live Webcast.
"There undoubtedly are individuals or groups who feel either one viewpoint or presenter should have been given more emphasis or time, but that kind of criticism is also healthy no matter who the critics are, because it means that they're watching or scrutinizing the process," Blumenthal said.
But again, an opinionated process is irrelevant to peer-reviewed science and evidence-based medicine.
Lyme advocates hope the IDSA changes its guidelines to allow more liberal
treatment. Doctors who don't believe chronic Lyme disease exists say there simply is no scientific basis to allow it.
The new IDSA panel will now review whether the existing guidelines should be maintained, modified or entirely rewritten, and expects to complete its review by the end of the year.
"The panelists seemed to be listening very intently, asking probing and
perceptive questions, which augers well for the outcome," Blumenthal said.
[snip]
If by outcome Blumenthal means the guidelines are going to be changed by a politician and his fans, then he’s just as delusional as the chronic Lyme activists. I’m sure much of the strange, irrelevant, and anecdotal information submitted to the review panel by the public will only encourage them to retain the existing guidelines intact. Certainly, Carol Baker’s statement doesn’t suggest that anything the panel heard was going to warrant much attention.
Posted by Relative Risk at 09:34 0 comments Links to this post
Labels: Blumenthal, IDSA, LDA, Lyme disease
CALDA, LDA and TFL Press Release on IDSA Hearing
CALDA, the national Lyme Disease Association and Time for Lyme have issued a joint press release regarding the IDSA Lyme review hearing, which is schedule for July 30th in Washington D.C. The release highlights the growing opposition to the IDSA guidelines, the importance of acknowledging the full spectrum of science in Lyme disease, and the importance of permitting clinical judgment and treatment options for patients. Concerns are also raised about the current process, which attorney Lorraine Johnson points out is not impartial because IDSA controls the process and has selected both the panel members and those who may present before the panel. Of critical importance is that fact that no physicians who treat chronic yme disease were selected to sit on the panel. The testimony will be aired live over the internet on July 30th.
Five sentences, six lies. At least the date is true. You’d think Karl Rove helped draft the above paragraph.
First, there is no “growing opposition.” It’s the same several dozen people saying the same things over and over and over, yet failing and failing and failing to provide any evidence for those statements.
Second, the “spectrum of science” is well-known to every scientist who has read or helped to create the body of 30 years of research literature.
Third, no one has outlawed “clinical judgment” (even bad judgment).
Fourth, patients have plenty of options, including finding another doctor.
Fifth, the IDSA doesn’t control the process; the moderator, jointly selected by the IDSA and the weasel attorney, Richard Blumenthal controls the July 30 review.
Sixth, no so-called LLMDs were selected because they have financial conflicts of interest--Something the activists and the LLMDs regularly accuse IDSA physicians and other scientists of having, and having let influence the writing of the IDSA’s treatment guidelines for Lyme disease. Kind of ironic, yes?
The actual press release is just a dense-pack of oft-told lies. I’m not going to pick through it again: having previously discussed much of the Lyme Movement’s junk thought.
In her book, The Age of American Unreason, Susan Jacoby notes the “defining characteristics of junk thought…are anti-rationalism and contempt for countervailing facts and expert opinions.” I suppose that’s why activists like Lorraine Johnson wanted patient and LLMD beliefs presented and represented, and ultimately allowed to affect the conduct and outcome of peer-reviewed science and evidence-based medicine.
Jacoby writes, “Junk thought should not be confused with stupidity or sheer ignorance, because it is often employed by highly intelligent people to mislead and confuse a public deficient in its grasp of logic, the scientific method, and the basic arithmetic required to see through the pretensions of poorly designed studies.”
I don’t know how or where Lorraine Johnson (JD, MBA) and her gaggle of quack MD’s got their respective degrees, but I’ll give them the benefit of doubt and allow that they are smarter than the average “chronic” Lyme sufferer. (Bearing in mind that ‘W’ went to Yale and the Harvard B School.) Having said that, I have to conclude they are regularly and consistently misleading and confusing the public about a common bacterial infection.
The only question is, why?
Posted by Relative Risk at 01:51 0 comments Links to this post
Labels: IDSA, LDA, Lyme disease
Columbia University’s embarrassing little center for the desperate search for any evidence that would justify the long-term consumption of expensive antibiotics to control an imaginary infection seems to be running on a shoestring budget. How many bake sales does it take fund some of the projects listed below? Evidently, these projects have to be supported by biased advocates because they cannot survive peer-review and attract funds from the CDC or NIH.
Current Studies
“Blood Screening of patients with Lyme disease”.
Funding: to be determined
“Proteomic Studies of CSF of patients with neurologic Lyme disease”
Funding: Lyme Disease Association, Inc and Time for Lyme, Inc.
“IV Ceftriaxone for Patients with Refractory Psychosis”
Funding: NARSAD** and Lyme Disease Association, Inc.
“Brain SPECT Imaging in Chronic Lyme Disease”
Funding: Lyme Disease Association, Inc, and National Research Fund for
Lyme and Tick-Borne Diseases.
Recent Studies
“Laboratory Testing in Chronic Lyme Disease”
Funding: Time for Lyme, Inc.
** NARSAD, which “supports scientific research to find better treatments and ultimately prevent severe mental illnesses,” is the only funding source listed here that makes sense, is objective, and has a degree of credibility. In this context, the organization is interested in the ability of the non-antibiotic properties of ceftriaxone to reduce psychosis. That’s a worthwhile goal and one advocated by others outside the Lyme advocacy movement.
Brian A. Fallon, M.D., M.P.H.,...aims to study if the antibiotic ceftriaxone may reduce psychosis in hospitalized schizophrenia patients. Research has shown ceftriaxone may have a unique neuroprotective effect by decreasing extracellular glutamate in the nervous system and by increasing glutamate transporter proteins. Glutamate is a major excitatory neurotransmitter which when dysregulated can cause problems with memory, attention, movement, sensation and perception. Although overactivity of the dopamine neurotransmitter system is believed to play a role in psychosis, other neurotransmitters, such as glutamate, may also be involved because not all patients respond to antipsychotic drugs that lower dopamine activity. Also, drugs that block the glutamate receptor NMDA cause symptoms of psychosis in healthy people, presumably by increased synaptic glutamate producing excitatory neurotoxicity. Agents that reduce excess glutamate activity are neuroprotective. Dr. Fallon has shown that ceftriaxone can improve cognition in patients with persistent cognitive deficits after Lyme disease.
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Posted by Relative Risk at 08:52 0 comments Links to this post
Labels: LDA, Lyme disease