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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I am one of those who bought the paper online. Apart your comment, which I do subscribe fully, I really wonder, what Steere and Wormser (I think those are the major guys) do in order to clear the situation, i.e. help people who suffer from lyme or maybe other diseases with the same symptoms. I met one practitioner in Germany who is placing ads in newspapers once a year, and this lyme disease spechialist did not even know Steere and Wormser.
ReplyDeleteAnd my comment: maybe it is much more profitable for pharmaceutic companies to treat all the different follow up diseases of lyme, than lyme itself. A vaccine for lyme would be bad for share holder value - so there will be none in the near future. And furthermore: social and health cost will explode sooner or later, and some day politicians really have to deal with the matter.
Hi Anonymous and welcome to Camp Other blog!
ReplyDeleteIn response to your comment:
"I am one of those who bought the paper online. Apart your comment, which I do subscribe fully, I really wonder, what Steere and Wormser (I think those are the major guys) do in order to clear the situation, i.e. help people who suffer from lyme or maybe other diseases with the same symptoms."
I do not know what they are doing, but from the perspective of patients it is patients' claim they are doing very little to clear up the situation. Many studies from those two researchers - Steere and Wormser - focus on either Lyme arthritis (which makes sense given Steere's background) or early acute Lyme disease - not late stage Lyme or those with persisting symptoms after standard antibiotic treatment.
There are other researchers - who were not co-authors of The Lancet anti-science letter - who have been doing research on immunological factors in Lyme disease including how the immune system is affected not only in typical sites for bacteria (e.g. knees) but also the peripheral and central nervous system and the brain.
But so far, no one has really completed the research needed to pin down whether or not persister cells may be the reason for patients' persisting symptoms until recently - when Dr. Kim Lewis' team at Northeastern University investigated the issue. Persister cells have been found in vitro. Now one has to determine what happens to them in people and also if they are causing chronic infection in some patients - how best to beat that infection.
Research on persister cells in B. burgdorferi could have been done years ago. Scientists knew such populations existed in other bacteria since the 1940's and in the early 2000's, interest was reignited in this population. If those who co-authored the anti-science letters looked into this issue for themselves earlier on and worked on it then, it's possible we would have had more answers by now as to how persisters do or do not contribute to patients' ongoing symptoms.
Also: Many times the authors of this anti-science letter and their close colleagues have said they think chronic Lyme disease/PTLD is an autoimmune-like disorder. Even though a number of patients disagree with this hypothesis, perhaps some people with Lyme disease have developed such a disorder - whether or not the bacteria persists. If so, then those stating this hypothesis should have done something more to find and develop treatments specifically to help patients with this disorder.
Some people have argued if you don't understand what causes a disease or disorder, you cannot treat it. There is some truth in that, yet we have some understanding of immune factors in MS and other conditions and treatments are always being researched and discovered - even though what causes MS and those conditions is unknown so far.
You have to start somewhere, really, and patients who either have a chronic infection, autoimmune-like disorder, or some combination of both have not received the treatment research they need. In the meantime, many patients continue to try different types of antibiotics over time in hopes of eradicating what they think is a chronic infection, and will continue to do so as long as they individually receive benefit from treatment.
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To Anonymous - (cont'd)
ReplyDelete"I met one practitioner in Germany who is placing ads in newspapers once a year, and this lyme disease spechialist did not even know Steere and Wormser."
Nods. Doctors in private practice may not be aware of all the researchers involved - though many are familiar with their country's health department or ministry of health and the guidelines for treatment of tickborne disease which they set - many of which have been derived from guidelines set by the authors of the anti-science letter.
Most doctors - even worldwide including Germany - ought to have at least some passing familiarity with Steere, as historically he first investigated the cases of juvenile arthritis in Connecticut and helped in coining the term "Lyme arthritis". His early efforts led to the discovery of Lyme disease in the United States, with William Burgdorfer finding the spirochete which caused the disease.
But doctors around the world may not always be aware of how their own countries' guidelines for treating Borreliosis may have come to be and that they were adopted from the US' guidelines many years ago - not developed from scratch based on research done in their own backyard.
And this is a problem, because even on its most basic level, US research may not apply to tickborne diseases in other countries. Over time, different countries have slowly begun tailoring those guidelines to suit their own findings.
e.g. In Europe, it is now well documented Ixodes ricinus ticks can transmit Borrela burgdorferi sensu lato in under 24 hours and in a few cases only a handful of hours. (Of course, with improper removal or if the tick had been recently feeding on another animal right before biting you, it can also be a short time to infection.) It may well be more research will be done in the US on American ticks which demonstrates shorter transmission times (without recent feeding) too - I do not know.
e.g. In Europe, 200 mg one pill dose of doxycycline IS NOT recommended for tick bite prophylaxis, whereas in the US it currently is. (I personally think US guidelines should change to match this one.)
So there are differences. And from what I can see, EUCALB and other agencies do not necessarily base all their guidelines on those of the authors of the anti-science letter who are responsible for setting their own treatment guidelines in the US.
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For Anonymous - (cont'd)
ReplyDelete"...maybe it is much more profitable for pharmaceutic companies to treat all the different follow up diseases of lyme, than lyme itself. A vaccine for lyme would be bad for share holder value - so there will be none in the near future. And furthermore: social and health cost will explode sooner or later, and some day politicians really have to deal with the matter."
On the contrary, vaccines are big business and make a lot of money. There are patents on the vaccines, typically, and there are vaccines for Lyme disease being developed in Europe right now which have even been through clinical trials in Germany (Baxter).
They were tested there because the developers thought more Germans would be willing to enroll for trials there for a Lyme disease vaccine than in the US, partly due to some people being afraid of vaccines and partly because of the aura around Lymerix, the first Lyme disease vaccine. But also, it may have been easier to organize trials and they may have been less costly to run in Germany - not certain, that's my speculation.
Remember that back in the late 1990's the Lymerix vaccine cost the patient $100-150 for a three shot series to get 78% protection. That's a lot of money for a series of vaccines which was not that close to 100% effective - and it was worth more back then. Whether an insurance company foots the bill or someone else does, someone ends up paying; someone ends up profiting.
And there is a market for this vaccine now: People who think they are at high risk will try the vaccine, especially hunters and outdoor sportsmen, those working in forestry, agriculture, and even gardeners. They will particularly want it now that many people have complained (like me) about how persisting symptoms of Lyme disease have changed their lives and not for the better.
As for pharmaceutical companies making a buck off people: Sure, they can treat the symptoms and that may be more profitable than curing it. Is that what's happening though - or is that cynicism? It all depends on who you talk to...
I know of researchers who are convinced that better treatments can be developed and they would likely patent those if found, and make money from curing people. I see no reason to give up hope on finding treatments that help patients with persisting symptoms get better.
Most of the current treatments those with chronic Lyme disease/ PTLD are given that come from pharmaceutical companies (versus, say, herbalists) are pain medications, anticonvulsants and antidepressants, and antibiotics. These are drugs which can still be used by many other people for other conditions and Big Pharma will not lose money from that perspective - these drugs will always have a market (at least until something better is found - everyone wants better pain medication including doctors who prescribe at this point and they are a huge factor in how many pharmaceuticals are sold).
I think specific research can be completed which a) figures out the disease mechanism in those with persisting symptoms and b) helps find new treatments based on what we currently know about Lyme disease, even if the mechanism isn't fully understood. And whoever comes up with new treatments stands to profit from it, one way or the other, if patients are satisfied.
Society can't really go on with people who are disabled or partially disabled and expect us to be productive and put money back into the economy. Even the 1% at the top know that a certain number of people have to be in the middle class workforce to buy products and make them, and keep the economy functioning for them - not just us.