I have now sent the following OPEN letter to Pat Smith, president of LDA, and Dr Brian Fallon, along with the link to this petition. Thank you to all who signed this petition! Elena Cook Open Letter to Pat Smith and Dr. Fallon re their Invitation to UK's Top Lyme Denialist Dr. Tim Brooks Directors, Lyme Disease Association (LDA) and Lyme Research Center, Columbia Univ., New York 10 November, 2015 Dear Pat Smith and Dr. Fallon, In August, I and others wrote to you privately, asking that your withdraw your invitation to Britain's top Lyme Denialist, Dr. Tim Brooks, to address the joint LDA/Columbia conference on 14 November 2015. Dr. Alan MacDonald, the world-renowned Lyme researcher, also expressed his outrage at the invitation.(see below) Dr. Tim Brooks is guilty of wholesale denial of chronic Lyme, the continued imposition of the fatally-flawed two-tier antibody testing protocol in this country, and insistence that nearly everyone is easily cured with a short course of antibiotics.(See, for example, p18 of Brooks' report to the Health and Safety Executive http://www.hse.gov.uk/aboutus/meetings/committees/acdp/161012/acdp_99_p62.pdf ) In short, Brooks is a carbon-copy of Allen Steere. Nevertheless, you both have seen fit to invite him to address your conference. Of even greater concern, your event is billed as a Continuing Medical Education (CME) conference. Those of us familiar with Brooks can only shudder to think what type of "education" he will provide to physicians who attend, hoping for clarification through the maze of controversy. In August, I stated that if you ignored my private letter, my next letter to you would be an open, public one. This is that letter. To it I am attaching the links to all the relevant correspondence so far, including my original private letter to you, your letter to Dr. MacDonald, and indeed the petition, signed by 249 Lyme patients from around the world, calling on you both to retract the invitation. I would like to add the following: 1. Pat Smith, you argue that the exclusion of our experts from the debate by the Denialist authorities over the years implies that we must not, in turn, exclude them from our own conferences. This makes no sense whatsoever. The Denialist point of view is everywhere. It rains down on patients from every doctor, every health practitioner they consult, with the exception of the precious few Lyme-literate doctors that exist, or try to exist, in the face of constant persecution. It is rammed down the throat of doctors via the major medical journals, the prestigious institutes, the public health agencies. It is in all the medical textbooks. It is underwritten by all the insurance companies, and is already incorporated into CME programmes. It is beamed down at the general public too, from biased journalists in the mass media and from the public health information prepared by the likes of CDC, NIH and in Britain, Tim Brooks and his PHE. It is everywhere and the Lyme movement does not need to use its precious resources to give the Denialist viewpoint more exposure. What is getting almost no exposure is the facts, and these are what physicians attending a CME conference on Lyme urgently need to hear. CME, contrary to what you say, is not about debate. It is about exactly what it says on the tin: education. Physicians attending your event will assume that those conducting CME are experts in their field, presenting information that is the best the current science can offer. Dr. Brooks is the antithesis of science. You claim your conference will provide opportunities for people to question or be critical of Dr. Brooks' presentation. It is hard to see how this can be so, given that there is no space on your published programme that would allow for this. The only Question-and-Answer session pertains to sexual transmission. Dr. Brooks' presentation is immediately followed by the lunchbreak. At best, Brooks will confuse. At worst, physicians will take what he says to heart, and go out and do harm to American patients. You have defended your decision on the grounds that such "mingling" brings about "unexpected collaboration"and produces "positive results" for patients. Here in the UK, we have had ample opportunity to see the fruits of such "unexpected collaboration". The British campaign "Lyme Disease Action" (LDA-UK) also invited Brooks to their conference this year, and indeed have boasted of a "partnership" with him from the moment he took office as head of Lyme diagnostics at the RIPL Biological Warfare Lab in Porton, England. LDA-UK assured us that the "partnership" with this biowarfare scientist would bring us great gains. In fact, no gains have occurred, and nothing has changed. Dr. Brooks continues to base all his policies on the flawed CDC/IDSA protocols, and we continue to languish at the bottom of the detection leagues for Lyme in Europe. Dr. Brooks' own explanation for this state of affairs is simple. He claims that Lyme is rare here. The only change has been in the type of Elisa as first tier of the insensitive two-tier protocol. Where his predecessor used a variety of Elisas over the years, Brooks - in harmony with the recent exhortations of Wormser, Steere and most of the major American Denialists - uses only the C6 Elisa. This new approach has seen our already-appalling detection rate fall slightly lower. Ninety-one percent of patients tested in the UK have been negative, in the last year for which figures are available. While the new "partnership" between LDA-UK and Dr. Brooks has yielded nothing of benefit for patients, it has certainly yielded great gains for the Denialists. LDA-UK has instructed its supporters to distribute leaflets produced by Brooks' agency, has helped Brooks to discredit Igenex lab, and its leader has publicly insulted Dr Alan MacDonald (though she was forced to retract her statement after a near-mutiny from patients). Perhaps most shockingly of all, the "unexpected collaboration" has led LDA-UK to sign up to an agreement that states that maternal-foetal transmission of Lyme is "uncertain". This agreement, as part of the James Lind Initiative which is still advertised on the front page of their website at the time of writing, was a disgusting act of treason. LDA-UK is fully aware of the reality of mother-to-child transmission and that the great danger it poses has been proven beyond any doubt by pathology. These policies, wholly endorsed by Dr. Brooks, enforce ignorance in obstetricians, paediatricians and family doctors. We can only guess at the number of avoidable stillbirths, miscarriages, congenital disabilities and child deaths this policy must have caused. "Unexpected collaboration" - there has been. "Positive results" - no. Now I would like to address myself to you, Dr. Fallon. Last year, several American ILADS doctors came to the UK in the hope of educating British physicians about the fallacy of Dr. Brooks' policies. You came here too, Dr. Fallon - but you did the opposite. You have met repeatedly with our chief Denialist, Dr. Brooks. You have attempted to give some of his views validity. You gained credibility years ago, Dr. Fallon, by publishing some important and insightful work on the neuropsychiatric presentations of Lyme. But that was a long, long time ago. I wonder how many patients are aware of what you yourself have been publishing recently. Particularly since you were appointed head of the Lyme institute at Columbia University, largely financed by patients' donations to Pat Smith's LDA? I wonder how many of the patients who donated that money or volunteered for LDA are aware that for some years now, in complete contradiction to the position that ILADS has held for decades, you have been insisting that there is such a thing as a "sensitive Elisa"? Or that - to the delight of the Steere camp - you now claim the C6 Elisa is a good screening test? Dr. Fallon, you know far better than I do the litany of reasons why ALL Elisas are insensitive, and should never be used as screening tools in Lyme. Why have you sided with the Denialists on this? In your presentation at the LDA-UK conference a few weeks ago, you championed the idea that the C6 Elisa was sensitive and could predict which patients with continuing symptoms might benefit from further antibiotic treatment. You did this on the basis of a study you conducted involving only 23 patients taking antibiotics , all of whom, on your own admission, met the extremely restrictive criteria required by the CDC guidelines. What made you think that from this tiny unrepresentative sample, you could draw conclusions about the utiity of the C6 Elisa for the Lyme community as a whole? And in an interview published online, where you were asked on which diagnostic test you would reply, you stated this: "I favor the C6 ELISA as the best screening test as it is an inexpensive and highly reproducible test that, as demonstrated by our research at Columbia, is also one of the most sensitive of tests while still being highly specific." (https://lindanee.wordpress.com/2010/12/02/ask-the-doc-interview-with-lyme-expert-dr-brian-fallon/) It is a dangerous fallacy to say that the C6 Elisa is a sensitive test in Lyme. I wonder how many patients know that in 2013 you co-published with lead author of the IDSA Guidelines Dr. Gary Wormser, one of the worst Denialists in Lyme history, in a work which shifts the emphasis from persistent infection to a nebulous chronic immune activation of unknown origin? Certainly, chronic borreliosis infection can in theory give rise to chronic immune activation. But your joint paper with Wormser appears to imply something else. Your own published objectives for the CME conference refer to the aim of educating doctors about continuing symptoms being due to chronic immune activation. I truly hope that the aim is not to convince doctors of the long-trumpeted Denialist view that Borrelia cannot survive short courses of antibiotics, and continuing symptoms must be due to an aberrant or auto-immune response in the absence of the micro-organism. That is a view that Dr. Brooks and other Denialists often promote, but it has been discredited again and again by the findings of pathology - including of Borrelia biofilm infection of the human body. Your published objectives for 14 November also include instilling in physicians "awareness that new vaccines have been tested in animals and show promise in humans". Most ILADS experts agree that the possibility of a safe and effective vaccine for Borrelia is remote, due to many immune-evasive peculiarities of the organism. And in fact another speaker at your conference will be Dr. Richard Marconi, whose talk is entitled: Chimeric Linear Epitope Based Vaccines for Lyme Disease & Other Tick-borne Diseases: Progress Report on The Road to a New Human Vaccine" Dr. Marconi's vision for chimeritope vaccines based on OspA and Osp C has been recently publicised by CDC. We know what happened last time an OspA-based vaccine was marketed for Lyme. And we know that genetic heterogeneity are a major issue in both OspA and Osp C, not to mention their irrelevance to the relapsing fever-type Borrelia that are now emerging as major causes of Lyme disease as potent if not more potent than B. burgdorferi sensu lato. One of the reasons the Denialists wish to impose the C6 Elisa as the universal first-tier screen is the fact that it will never interfere with a vaccination programme of this type, whereas other tests might. Why are you Pat Smith, and you, Dr. Fallon assisting CDC to promote this potentially harmful vaccine when experts including those from the world-renowned Insitut Pasteur have warned that genomic variability and flux in Borrelia means these vaccines will fail to protect? When people criticise your approach, they find themselves subject to censorship, expulsion, character assassination and worse by your stooges on the Lyme forums. I fully expect you to attempt to ban my letter, to the extent that you can, rather than respond to the points I am raising. You advocate inclusion and freedom of speech for Denialists, but not, it seems, for those who in the patients' movement who are critical of your approach. Dr. Fallon, I am aware that you were sent ample proof that Dr. Brooks denies the reality of persistent infection, following your bizarre statement that you thought Brooks did believe in it. A brief look at all important policy-making documents and decisions by Dr. Brooks makes it crystal clear he rejects the concept of persistent infection after treatment. Even though persistence of the microbe has been proven over and over again, by culture, PCR, and more recently, DNA probes. Patients in this country scan in and post to the internet copies of the letters Dr. Brooks' lab sends out to their doctors. Invariably we read the same thing: in the event of a seronegative result, patients who are beyond the immediate post tick-bite period, the doctor is instructed that: "No further action need be taken". For many, those words from Dr. Brooks lab will be tantamount to a death sentence, or at least a life as good as death. Dr. Brooks' position is clear, at least to those of us who don't spend our time admiring the cut and style of the Emperor's new clothes. What's less clear, Dr. Fallon is where you stand. In a published paper, "Post-Treatment Lyme Syndrome and Central Sensitization" you wrote: "Lack of response to antibiotic therapy suggests that the underlying mechanism for persistent symptoms among a subgroup of patients is no longer persistent infection." (Journal of Neuropsychiatry and Clinical Neurosciences Volume 25 Issue 3, Summer 2013, pp. 176-186) That statement defies everything we know to be true about persistent infection, as proven by pathology. In recent weeks, there has been unprecedented exposure in the UK media for chronic Lyme. This has come about because of John Caudwell, a British billionaire whose whole family has Lyme. Despite his wealth, he was unable to obtain a correct diagnosis in this country for his family, thanks to the policies imposed by Dr. Brooks and his predecessor. Dr. Brooks' response was to instruct his agency, PHE, to make the following mendacious statement to the British press: ‘There is no scientific evidence to support the suggestion that Lyme disease is caused by anything other than ticks. There is no scientific evidence that Lyme disease causes ME, Alzheimer’s or Parkinson’s disease.’ That statement completely ignores the proven reality of mother-to-child transmission, as well as Dr. MacDonald's detection of Borrelia biofilms filling entire Alzheimer's plaques in autopsy brain specimens from five out of five dementia patients. And evidence has been piling up for years on the other issues too, as you both well know. Dr. Brooks' policies do harm to patients - harm that leads to lifelong disability and sometimes death. By legitimising Dr. Brooks and the C6 Elisa as a screening test, you are colluding in that harm There is a well-known strategy, known as the Stratfor Strategy, in which entities with power enforce their dominance over citizens they have harmed by hijacking their campaigns, appointing puppets to run them. The puppets are often recruited from among the campaigners themselves.Sometimes they agree to play their puppet role out of a misguided and naive notion that it will eventually bring benefits for patients. At other times, their motives are more self-seeking. Either way, what happens next is always the the same. The puppets instruct their followers that a "partnership" with the enemy is the only way forward. They help that enemy persecute any who speak out against the new collaboration, warning darkly that any continued hostility to the Enemy stands to destroy all the delicate "progress" that has been made. But the "progress" is an illusion, and all that is destroyed, in the end, is the campaign itself. The Stratfor Strategy has been around a very long time, and has been used by the mighty tobacco industry to try to derail anti-smoking campaigns, Dow Chemical to destroy the campaign of the survivors of the Bhopal disaster, and by Nestle to destroy a boycott aimed at drawing attention to child deaths caused by their aggressive marketing of baby milk in desperately poor regions of Africa that lack clean water to prepare it. It's a strategy that is used time and time again by the powerful to destroy the campaigns of the powerless. It is used because unless those who are targeted understand that it is being used, it inevitably achieves its objectives. In my private letter to you I expressed anger that you, Pat Smith, appeared to be blackmailing Dr. Alan MacDonald, by implying that LDA would refuse funding for his research if he continued to speak out against the Brooks invitation. I realise now I was mistaken. It turns out that LDA has never given any funding to Dr. Alan Macdonald. The Cytoviva microscope was effectively a loan, not a gift. You recalled it in a great hurry from Dr. MacDonald just as he began to make important strides in detecting Borrelia biofilms with it.Biofilms are, by definition, proof of persistent infection. Mrs. Smith, who pressured you to demand that Dr. MacDonald return that microscope so hastily? And why did you concede to that pressure? These matters, and all of the issues raised in my letter, are relevant to the Lyme community throughout the world, and deserve an answer. Yours faithfully, Elena Cook www.elenacook.org Link to Relevant Correspondence including letters from Pat Smith, Brian Fallon and Dr. Alan MacDonald summer 2015 (leads to external site -please use back button to return) My original (private) letter to Pat Smith and Dr. Brian Fallon in response to correspondence re Tim Brooks 5 Aug 2015 Petition with 249 supporters calling on LDA and Dr. Fallon to retract the invitation to Dr. Brooks The articles by Elena Cook on this website may be distributed as long as they are reproduced without changes, attributing the author, and the link to the original URL is included. Disclaimer: Material on this website is intended for informational purposes only. It is not intended as medical advice. For all questions relating to your own health, please consult a qualified medical professional.The site owner is not responsible for the content of external sites. 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