The full text was (and continues to be) officially behind a paywall, so most patients have not seen the full version unless they sought out alternative links, such as this site's copy (pdf) posted by Dr. Susan O'Connell, who was a co-author of the letter.
One of my ongoing complaints about paywalls is that disabled and often financially challenged patients cannot afford to pay for 24 hours access to a paper about an issue which concerns them or is about their medical condition. Another issue is some patients have cognitive issues including short term memory problems, so even if they have the money, they need more than 24 hours access to a paper. But when it comes to this particular paper, I think most Lyme disease patients would give it a pass when they read it and realize that the authors' focus is on criticizing the organizations which have served and represented them for years.
But I digress… Now that I've read the full text more than once, I'm left in a difficult position in how to respond to this paper as a patient who has persisting symptoms related to Lyme disease and is also skeptical.
First of all, when you read the first paragraph and find that advocates and activists around your disease are being equated with AIDS denialists and antivaccine campaigners, you know you're off to a bad start. It angers me, because making such comparisons has a tendency to stereotype and label all Lyme disease advocates and activists as being analogous to these groups.
Reading this made me feel defensive because I'm not an AIDS denialist and I support vaccine development - but I have ground to cover, and I am going to work on addressing the core content of this letter over a series of entries in
Many of the authors' criticisms and concerns were ones I was familiar with before - I just had never seen them concentrated all in one place until now, serving as a sort of beacon which informs the readers of The Lancet just how dreadful they think Lyme disease advocates and activists are. And a lot of the criticisms are not even about advocates and activists themselves.
I'm not naive - a number of these issues are ones of which I as a patient am also critical. Bad things have happened in regards to how some medical professionals have treated Lyme disease patients. There are charlatans out there without medical degrees who have taken advantage of patients who are sick and vulnerable. There was a self-defined Lyme disease expert who killed a patient with an injection of bismuth. There was some man who pretended to be a doctor in California who told a woman to sit in a hot tub with a watermelon to help her kidneys and misdiagnosed her mother with Lyme disease when she had MS. There are some doctors and laboratories who may have conflicts of interest, and that's something which would require a full investigation if it is going on. I also know that some advocates and activists hold unsubstantiated beliefs about Lyme disease, too - and hope that by having this blog and referring to scientific source material that they will leave here more informed.
So I'm not ignorant of the statements and criticisms the authors are emphasizing in their letter to The Lancet. Not at all. Some of the accusations and concerns voiced are based on situations which happened over twenty years ago, and notably, some of them deserve more than the quick soundbite the authors devoted to them because of the complex issues surrounding them.
Soundbite is what we get, though, and the letter's intent isn't to persuade anyone things are going well. It is a charge against all the authors see as erroneous, flawed, and egregious, without subtleties; without digging deeper or giving readers a wide angle view.
Reading this paper was difficult for me because it's a tired trope that's been pulled out before, again and again, in similar editorials and letters about chronic Lyme disease - in some cases from some of the same authors who wrote this one. I begin to think, "Don't you guys have anything new to say?"
And I'm not saying that to be dismissive of everything they wrote. It's just that it's no surprise when I've seen it before.
I want to start with focusing on one aspect of the letter which criticized Lyme disease patient advocacy groups and activists for supporting pseudoscience and funding Lyme disease research and publications which fall into a parallel universe.
The authors state on page one:
"As with other antiscience groups, some Lyme disease activists have created a parallel universe of pseudoscientiﬁc practitioners, research, publications, and meetings, arranged public protests and made accusations of corruption and conspiracy, used harassment and occasional death threats, and advocated legislative eﬀorts to subvert evidence-based medicine and peer-reviewed science."They also later state:
"Activists have organised their own scientiﬁc meetings, published their own journal, and funded research by LLMDs 58,59 All this activity has led to the creation of a cadre of doctors and activists with their own institutions, research, and conferences, a dedicated pool of patients, and unorthodox, alternative views of microbiology, immunology, and pharmacology."(That's a pretty heavy indictment of these activists in the paragraph above - of which I'm certain only a very few engage in harassment or make threats. I don't endorse such behavior, and unfortunately in any group where there are empassioned activists, a few might step over the line that most of us won't.)
Anyway, when you examine citations #58 and #59, the institutions and research grants the authors are mentioning are none other than Columbia University's Lyme and Tickborne Diseases Research Center and many grants which the Lyme Disease Association have given toward research.
So it would seem that the authors think that Columbia University and the many researchers who were awarded grant money by the LDA are engaged in a parallel universe of pseudoscientific research, publications, and meetings?
If so, where are these pseudoscience-laiden research projects and publications?
- The Lyme Disease Association awarded 94 research grants to researchers in 14 states between 1992 and 2012. A list of the grants can be found at the preceding link.
- The above research led to the publication of 28 peer-reviewed papers in such journals as PLoSONE, Journal of Bacteriology, Genetics, Journal of Medical Entomology, Neurobiology of Disease, Gene, Emerging Infectious Diseases, Neurology, Infection and Immunity, JAMA, and others.
- Research covers a wide range of Lyme disease related topics such as surveys of tick populations, comparative genomics of Borrelia burgdorferi plasmids, proteomic studies of cerebral spinal fluid of patients, investigation into Lyme disease and other tickborne diseases in the southern US, examination of the humoral response to Borrelia burgdorferi, and many other topics.
- One project resulted in data used to apply for/receive $4.7 million NIH grant. Significant genome mapping initially funded by the LDA has shown that different strains of Borrelia have the ability to exchange genetic material among themselves.
- The Lyme Disease Association's 2013 Conference in June will have a wide range of scientific researchers and a few doctors who have experience treating Lyme disease giving presentations.
- The biographies of those researchers and doctors who attended the Lyme Disease Association's 2012 Conference cover a wide range of tickborne disease related specialists, none of whom seemed to support pseudoscience.
- The Lyme Disease Assocation and Lyme Research Alliance, in collaboration with the trustees of Columbia University helped established the Lyme and Tickborne Diseases Research Center at the university. Here's an overview from the LRA of what the Center does: Columbia Lyme disease research summary.
- The Lyme Research Alliance has a list of currently active projects: research on vertebrate reservoirs for tick-borne diseases in central US, identification of better diagnostic tests and better treatments for people with chronic persistent symptoms, strain virulence characterization from EM rashes, research on antineuronal antibodies in patients with persistent symptoms, exploration of potential biomarkers for persisting brain and nervous system symptoms, and investigation into autoimmunity treatment for chronic Lyme disease.
- The Tickborne Disease Alliance and X Prize Foundation created a diagnostic X Prize global competition to develop a fail-safe diagnostic tool for Lyme and tick-borne diseases.
- Although there is no detailed list of projects provided, Lymedisease.org (formerly CALDA) states on its website that it "funds research projects at Stony Brook University (NY), the University of California at Davis, Stanford University, Johns Hopkins University, and the University of New Haven (CT)" and awards grants which "average between $15,000 and up to $50,000 for research projects up to 2 years."
- Of historical significance, it's important to remember that the Lyme Disease Foundation (which is retired) originally supported development of an effective vaccine to prevent Lyme disease. It also supported a number of scientific conferences and projects, and partnered with the NIH's Rocky Mountain Labs, Tulane University, Texas A & M, Connecticut Agricultural Experiment Station, and many others.
To add to the confusion I have about The Lancet antiscience letter, it also seems as if leaves open the potential for the authors' statements to shoot themselves in the foot. One of the researchers who is part of the IDSA and CDC-endorsed American Lyme Disease Foundation's (ALDF) science advisory board is also a member of a Lyme disease patient advocacy science advisory board. Dr. Robert S. Lane is a science advisor to both Lymedisease.org/CALDA's science advisory board and the ALDF's science advisory board. Dr. Stephen Barthold, who is often called upon by Lyme disease advocacy groups to discuss his research at conferences and in interviews and was a recipient of an LDA grant - is also a member of the ALDF's science advisory board and has served on ad hoc committees for the National Research Fund for Tick-Borne Diseases, Inc.
Any of a number of the researchers who have attended and given presentations at major Lyme disease advocacy organization conferences and events and were awarded grant money by Lyme disease advocacy organizations were at times affiliated with (either directly or indirectly) the authors of the antiscience letter in The Lancet. It would be strange if they found their research to come from a parallel universe - but if it did, at least part of it would be coming from their own.
Next installment on Lyme disease pseudoscience and science: Discussing what constitutes the facts about Lyme disease in relation to the antiscience paper. Stay tuned...
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