LYMEPOLICYWONK: IDSA Dissing Lyme Advocates in the Lancet
A recent article in Lancet written primarily by authors of the IDSA Lyme guidelines aims ”to blow apart the world of the Lyme disease advocates”–a goal that sounds more appropriate to warfare than medical journalism. Most of the authors of the article were under investigation by the Connecticut Attorney General for violation of antitrust laws in connection with the development process for the IDSA Lyme guidelines. The opinion piece is included in Lancet’s “personal view” section and reads like a personal vendetta from those named in the antitrust investigation, referring to patient advocacy groups as “antiscience” and making ad hominem attacks on physicians who treat chronic Lyme disease.
But there is no real attempt to engage in the science here. The reference list to the piece contains a single article that presents the view opposing that of the authors—an article that includes 147 references from the peer-reviewed medical literature. Other opposing articles and citations are ignored (including over 176 studies submitted at the IDSA hearing). Fair enough that they disagree—but it is truly disingenuous for the authors to ignore all research that does not support their views and to dismiss the opposition, who cite these studies, as “antiscience”.
Doesn’t this type of rhetoric offend the core principles of science? Namely dispassionate discourse, unbiased assessment, and impartial analysis? The scientific community should be alarmed and disturbed that a medical journal like Lancet would publish this type of diatribe. It is also alarming that the researchers on the paper have essentially jumped into the gutter for an all-out mudslinging contest.
Call it what you will, it is not science, and it does not engage in a legitimate debate of scientific issues. So much for dispassionate discourse and please do not tell me that this cast of characters is remotely capable of being unbiased or producing impartial science in Lyme disease. One can only hope that those on the outside looking in can distinguish between science and opinion.
You might remember that the Institute of Medicine (IOM) recently highlighted the IDSA Lyme guidelines to illustrate the necessity for standardization and transparency in guideline development processes. On top of this, two research studies by members of the IDSA conclude that IDSA guidelines in general are largely based on opinion, not science. That’s a lot of public pressure placed on the IDSA regarding its guidelines. Unfortunately, this article seems intended to deflect attention, rather than remedy, the real crises the IDSA faces as an organization—the substitution of opinion for science in guidelines and its shoddy guideline development processes.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is CALDA’s Chief Executive Officer. Contact her at lbjohnson@lymedisease.org.
The Lancet article, even the abstract, starts off with a false conflagration with HIV-deniers and anti-vaccine extremists. This is a cheap debating trick, not science.
Further, the statement that Lyme is "geographically limited" is disingenuous. I think even the most conservative of maps showing the spread of ticks would show it covers, at least, a vast portion of the USA. There were articles virtually every week, in the most mainstream news, in the past Spring and early Summer, talking about 'explosions' in tick populations.
Further, I have the same response I always have when reading or hearing this larger argument:
Where is the outcry from these concerned physicians and scientists regarding the dismal accuracy of Lyme disease testing? This is not a contentious point, and has proven disastrous for many. Why is there never any acknowledgment that the existing tests test only for a couple of strains, when many more have been identified?
Where is the demonstrable concession that co-infections and the multi-system, multi-infection nature of the disease (especially when not properly diagnosed for a long time) makes this about much more than "Lyme Disease"? It seems to me that many LLMDs have expressed the opinion that when it's 'just' Lyme, treatment proceeds much more simply?
Also, where is the hue and cry about alternative Cancer treatment, MS treatment, etc, etc? There certainly are fringe treatments in all of these. In my opinion, those things gain footing because people are so desperate. And as long as the whole phenomenon of this illness is denied, the doctors ridiculed and persecuted–it leaves people with fewer and fewer legitimate resources. And more desperation.
Finally, okay. It doesn't exist. I would like someone to explain to me that astonishing amount of formerly healthy people struck down with remarkably similar symptom constellations. If they can say with such certainty that it is NOT Lyme, then what is it, and what are they doing to find out?
"an antiscience movement that denies… the benefits of vaccines"
Ummm… Like LYMErix? The vaccine that was pulled from the market b/c of the many complications it caused?!?!
"mainly non-specific symptoms"
Such as white spots on your brain, or the verifiable neurologic damage? Oops again!
"accused opponents of both corruption and conspiracy"
Of which they WERE legitimately found guilty…
"and spurred legislative efforts to subvert evidence-based medicine"
The ONLY legislation that I've seen does NOTHING MORE than ALLOW a doctor to advise his(her) patients of the two standards of "evidence-based medicine" and allow the patient to make an informed decision. i.e. the legislation merely allows the doctor and patient to proceed as they WOULD have without the threats of the IDSA. And if by "evidence-based medicine", they mean double-blind studies… Lorraine calls them on this argument in her paper "Lyme Disese: Two Standards of Care": "It is estimated that only 20% of medicine practiced today is rooted in double-blind studies."
"The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health."
Ahhh, there IS ONE thing that we agree upon. The "medical practitioners, and commercial bodies" of the IDSA responsible for these atrocities should be put in jail for the crimes that they have been indicted of by the Attorney General of CT. Furthermore, they should also be tried for crimes of humanity for denying treatment to hundreds of thousands of patients. There will never be restitution for the pain, suffering, and losses that many in the Lyme community have faced, but everyone who has been bankrupted by paying for the entirety of their treatment out-of-pocket could (and should) at LEAST be compensated.
This disease is an epidemic and even they cannot avoid catching it forever! It's in the ticks, in mosquitoes, in the country and cities, and in our blood supply. It can be passed to our babies from their mothers and perhaps even sexually. One day it will affect them or someone close to them. Then, they will be forced one-by-one to confront the reality of this disease. No amount of money can cure them. They've opened Pandora's box and they think they can control it…
I hope it does NOT come to this… But, there is so much that we don't yet know about Lyme. This is a national epidemic and it will eventually (with or without the advocates) command the attention of the nation as AIDS has done. The sad part is the insidiousness of the disease and all of those who will be affected before that time. The saddest part is that our children are most vulnerable. No one should have to suffer b/c of the IDSA – LEAST of all the children! (And sadly all four of my children ARE infected).
I cannot thank the Lyme advocates enough for everything that they do. And hats off to Lorraine for EVERYTHING that she has done!
No, the general public cannot not discern opinion from science. Truth is on our side, but sometimes it takes a long time for that trump card to be played.
I hope Lorraine will submit her rebuttal to the Lancet journal. It requires an answer, I think, and hers is a good one.
The real threat to public health are the authors of the Lancet opinion piece and the journal editors who don't appear to have ethical standards when it comes to evaluating vicious attacks pretending to be science.
"Antiscience movement. . . denies the benefits of vaccines. . . a threat to public health?" –
Every (IDSA) physician knows when they prescribe artificial steroids for known debilitating s/s complications of chronic bacterial Lyme-Borrelia and/or coinfections they destroy one's immune system, they cause more damage to major organs, they cause more severe long-term pain and suffering, and death.
Antiscience . . . benefits of vaccines . . . that threaten public health? They should be charged with crime!
First they ignore you, then they laugh at you, then they fight you, then they lose.
-Gandhi
Guess the IDSA isn't laughing now.
I have said it before, and I'll say it again.
These "scientists" don't even understand the principle of parsimony (AKA O'cam's razor), which is a major tenant of science (or western science at the least).
Thus, they prove themselves no "scientists" at all – "professional opinionaters" is more accurate.
When I was in graduate school, and then at UC, we had raucous debates on the topic at hand. Most of the time, the debates were civil enough, but if you voiced an adamant position that was not based on solid data, or where there was conflicting data, you would be verbally eviscerated.
"Science" came about as a philosophical process whose underpinnings are active debate. The only "anti-science" I see is the one sided presentation of their viewpoint. Scary, I wonder how much of a problem this is for the rest of medicine. is medicine even science anymore?
I hope Lorraine or one of the LLMDs can write a rebuttal.
Here’s a true threat to public health: the CDC has estimated that there are 6-12 times more actual Lyme cases than are reported using CDC surveillance criteria. In the past ten years approximately 225,000 cases have been reported in the U.S. So, if we’re really conservative and say that the true number of people infected is a mere 5 times 225,000…..that would equal one million, one hundred twenty-six thousand, one hundred and twenty-five. That means 1,126,125 people were infected with Lyme in the U.S. in the last decade. And if you go with the more accepted 10-fold number, that’s well over 2 million people.
Now that's a public health issue!
One never hears a word of concern from the authors or the CDC about this missing population. What do they think has happened to these people? Is there alarm that they might not have been properly diagnosed and treated? Where are they now?
I can tell you…they are suffering from chronic Lyme and many have become advocates for themselves and their families.
I trust that ILADS, LDA, Columbia and CALDA will be mounting a strong response, based on scientific evidence… of which there is plenty.
(IDSA)Go Back to School, Learn Your ABC's and Get Your "Stop Bullying" vaccines-
Spirochete/AIDS acquired immunodeficiency disease is a leading biosafety level 2 disability pandemic.
As a class of individuals, we have privileges, protections and immunities for rights of access, choice, privacy, dignity and respect of life-saving (ILADS)/AIDS healthcare.
Remember how you laughed when you saw your first toadfish? You had to ask yourself, is that thing more stupid than ugly, or more ugly than stupid?
The big bulging eyes on top of its flat head, combined with its oversized mouth, and whiskers protruding from its snapper jaws, compliments its sharp spines and the crude grunting noises generated from its bladder.
As ambush predators, toadfish lie around motionless in the mud amongst trash and debris, waiting for innocent prey to wander by- attacking and killing to satisfy a basic primal need.
The toadfish is edible, but is rarely consumed due to its grotesque appearance.
Reminiscent of the toadfish, the IDSA's latest article has me wondering if anything could possible be more stupid, ugly and laughable, and at the same time more totally useless?
It is nothing more than a poorly written re-hashing of what they have been doing for the past 20 years and is certainly not worth the time and effort of an intelligent response.
But- maybe NASA could sent the article into space, like the toadfish once was, to see if microgravity has any positive affect on it?
Dear Shapiro etal, Read my blog and recent lyme journey you bunch of sadists. Lead one day in my life.
http://www.homeschoolgardener.blogspot.com
Dear Dr Paul G Auwaerter MD , Johan S Bakken MD, PhD , Prof Raymond J Dattwyler MD , Prof J Stephen Dumler MD , ProfJohn J Halperin MD , Edward McSweegan PhD , Prof Robert B Nadelman MD , Susan O'Connell MD , Prof Eugene D Shapiro MD, Prof Sunil K Sood MDk, Prof Allen C Steere MD , Prof Arthur Weinstein MD , Prof Gary P Wormser MD:
I am writing this letter to all of the members if the scientific community who put their names on the recent article in the Lancet entitled: Antiscience and ethical concerns associated with advocacy of Lyme disease.
While I strongly disagree with almost everything that you all have ever said regarding Lyme Disease, it's treatment and the actual existence of Chronic Persistant Lyme Disease, I can understand your reluctance hurt yourselves financially and professionally by admitting that you are wrong.
Since the patients that you are sentencing to life long disability, mental impairment and even death can never expect to receive any sort of acknowledgment. let alone an apology from any of you no matter what the newest research confirms, I think I have a way that we can validate each and every one of your conviction to your position.
It is really quiet simple. My proposal is that you all submit yourselves to putting your health where your wallet is.
We could set up an experiment where you are all infected with the three forms of Borrelia Burgdorferi (the Lyme causative agent) AND the most predominant co-infections that commonly occur.
These would include the over two dozen piroplasms that can be carried by deer ticks and transmitted to humans (instead of just focusing on Babesiosa microti), all of the Bartonella Like Organisms that have proven to be commonly transmitted from ticks to humans, the Ehrlichea and Anaplasma vectors also common in ticks that can be transmitted to humans through a bite.
We would then treat some of you with treatment you currently recommend (2 weeks of Doxy at 100-200mg per day) and some of you with placebo. Then we could study for you a few years to see who develops complications directly resulting from a commonly occurring tick bite.
I think that this could be a wonderful experiment as you all really seem to believe that the guidelines that you have set up will actually treat you and are no more/no less than the average person would receive.
Of course, I can understand why you would be hesitant to follow your own treatment guide lines as none of the Babesia species are even affected by an anti bacterial anti biotic as they are protozoans and not bacteria.The thought of being infected with a BLO (bartonella Like Organism) would also have to be scary for you since again, Doxy or any other anti-biotic would not be remotely effective and Levofloxacin is almost never prescribed for Lyme or Babesia. And that doesn't even acknowledge the FACT that Borrelia Burgdorferi (lyme) is not completely treated with two weeks of Doxy as you all say it will.
We could check back every six months, offering you no additional treatment, for the next 10 years and track your progress.
What do you think ? ARE ANY OF YOU WILLING TO TAKE THIS CHALLENGE? ARE YOU WILLING TO PUT YOUR HEALTH AT RISK AND USE ONLY THE TREATMENT THAT YOU SWEAR WILL WORK?
I am eagerly awaiting your response and am excited to test your theories on their most staunch supporters.
Best,
Joy Ganss Brady
All of this raises the question (again) of why a private, non-government organization with numerous conflicts of interest including ties to insurance companies is not just advising the CDC and NIH, but setting national guidelines for how certain illnesses are diagnosed and treated. I don't see other medical organizations casting themselves in that role.
This unfortunate state of affairs in Lyme disease is allowed to continue because of the sponsorship of federal health agaencies, the CDC in particular.
CDC employees have a financial stake in Lyme disease as do certain IDSA members.
A blind and unquestioning medical community accepts these perverted views.
See… http://lyme.kaiserpapers.org/20-reasons-why-lyme-disease-is-undiagnosed.html
Another thought: if ILADS docs do not want to try to get a rebuttal to this published in the same journal, then maybe the activists should step up to the plate. They were also trashed, and they are the primary victims of the mishandling of lyme disease by the establishment, or at least the establishment has allowed this disease to be highjacked by a bunch of thugs.
Let the real damage be described, the full extent of it, and the reasons for the activism in state legislatures and in film, etc.
Responses to this outrage need to get farther than our own community. We are preaching to the choir here.
Joy Ganss Brady is my new hero – beautifully worded, truthful in every way – thank you for taking the time to put the effort into this note.
I have to admit, I was surprised to see a letter of this nature and tone in the Lancet, and even more surprised by the content. (Well hey, who knows – maybe Trine Tsouderos was their ghostwriter after all.)
If you haven't read the full text yet, well, it is a scathing indictment of everyone who has Lyme disease and everyone who is an advocate. (I've just read through the full text and will be writing about some of it in my blog this week.)
I do think that if anything, patients want more research on Lyme disease and have been asking, pleading, and protesting for research for years. The lack of attention for the chronic persisting symptoms people have suffered with has led to the community raising funds for their own research.
How is this approach considered antiscience?
On my end, I'm not in support of the growing number of conspiracy theories about Lyme disease that have sprouted out of the woodwork like mushrooms and I don't think a number of alternative treatments are effective for treating tickborne infections.
And I do think scientific evidence is important in helping to determine what is best for diagnosing and treating patients. Like Pamela Weintraub said, "If we are ever to unravel the mysteries of Lyme disease and find a cure, it is science – pure and unadulterated – that will lead us home."
That said, I'd like to call attention to the bigger picture:
This letter in the Lancet is a reflection on the IDSA guidelines panel and their failure to help those of us suffering with persisting symptoms.
The Lyme disease community has seen over two decades of patients not getting enough research on treatment for their condition – as well as not enough compassion for their suffering.
On the IDSA panels' side, they have yet to make a clear, detailed and cohesive argument that supports their changing position of what exactly they think chronic Lyme disease is as a clinical diagnosis and how to treat it. (They're really good at telling people how NOT to treat it.) The IDSA panel has stated on their own web site and in the NEJM that chronic Lyme disease is a condition which can include objective late-stage symptoms of Lyme disease as well as a condition that is not caused by Lyme disease at all. Their comment on the Klempner study is that we are very ill individuals who have post-Lyme disease syndrome, and they proposed it is an autoimmune condition. Yet again, the 2009 publication, "National Institute of Allergy and Infectious Diseases, NIH: Impact on Global Health" stated the following (where PTCLD = Post Treatment Chronic Lyme Disease):
"In NIAID-supported clinical studies, case subject patients with PTCLD were compared with control subjects without such symptoms for the presence of several human leukocyte antigen (HLA) class II (DRB1 and DQB1) genetic markers, some of which are known to be associated with the expression of autoimmune reactivity. The results obtained did NOT support the involvement of an autoimmune mechanism in PTCLD."
So, according to their research, what do those of us with persisting symptoms actually HAVE at this point?
While science is a process of not knowing and uncovering the truth, over the past twenty years I get the impression the truth has become muddier rather than achieving the clarity it usually does with extensive research and experimentation.
My rant has not only been that this letter is an example of acting unprofessionally in mischaracterizing patients and advocates – but that in over TWENTY years they have failed to complete scientific research that has helped patients improve their quality of life and recover their former level of health – and they have yet to have a solid theory based on their leading hypothesis.
If they had a solid working theory, would we even be here? Would there be a controversy? Scientific research would have pinpointed what exactly happens in the course of Lyme disease (and possibly coinfections) in the unfortunate group of us who do not get well after a single course of antibiotics.
But no…Either they don't have all the evidence synthesized in one place, the evidence is inconclusive, and/or the evidence ignores other data and competing hypotheses such as chronic infection.
I know people have gotten better with antibiotic treatment beyond treatment stated in the guidelines, and that points to persistent infection to me.
Whether or not that is the only factor at play in this for everyone affected remains to be seen – I suspect the issue is multifactorial.
Someone has to roll up their shirtsleeves and do more research out there to find better testing, treatment for infection, and treatment for symptoms for this life-draining disease.
If Willy Burgdorfer said in his interview with UOS that the serology has to be started over from scratch, I wish he could clarify that statement and give us ideas on what he thinks Lyme disease blood tests should look like instead (and why). That might be a good start.
We need to strengthen our ability to argue in support of science as advocates and patients. Where something is in doubt, we need to point out it's in doubt and neither side knows the truth of it yet.
In closing I leave you with a quote by Rebecca Wells:
"Knowledge is power, and real power remembers the weak, the ill, and the forgotten. We shall not forget anyone who suffers."
They're scared. Otherwise they wouldn't have bothered writing that article. They are trying to sway public opinion, not realizing the tide has already turned. Their gravy-train is coming to an end and they know it.
Keep on fighting. Remember though, our credibility is constantly under attack. By destroying our credibility, they destroy our stories, and our movement.
We can't resort to the same smear-campaigning the other side engages in, because they have mainstream "science" (HA!) and doctorates, and we don't. We have to be calm, cool, and collected at all times.
The Lyme/Assoc. Disease community needs to pay for TV commercials for public viewing of the devastating and life-threatening consequences in children, and others. Most people have only heard of Lyme disease but don't know anything about it, nor have most even heard of other life-threatening TBD's.
Most other chronic illness organizations have TV commercials for awareness, prevention, education and research and fundraising, why not the Lyme community?