Crypto-infections: Denial, censorship and repression - the truth about what lies behind chronic disease

‘Knowledge of infectious diseases teaches men that they are brothers and that they stand in solidarity’.

Charles Nicolle (21 September 1866 – 28 February 1936) Awarded the Nobel Prize for Physiology or Medicine in 1928

‘This book is a very necessary document, which sheds light on the issues of Lyme disease that are affecting patients worldwide.’

Professor Jack Lambert, Infectious Disease Specialist, Dublin, Ireland

Dedications

To Claude Capelier, philosopher and writer, who has encouraged me during the writing of this book and who, with great foresight and intelligence, has helped me with the writing and editing.

To my family, my wife Véronique and my four daughters, Lætitia, Lorraine, Aurore and Natacha, who have always supported me with all their love, even if it was difficult for them to see my passion for my friend Borrelia take all of my attention and time during all these years.

To the patient groups in Ireland for supporting the work of translating this book into English.

To the European Lyme Resource Centre, an educational centre established in Dublin, Ireland, which will serve as a support for patients and healthcare providers alike (https://www.lymeresourcecentre.com/index.php/).

To Professor Jack Lambert, founder of the European Lyme Resource Centre, located in Dublin, Ireland, who enabled the translation of this book. Jack Lambert wrote the foreword for this book and an up-date of the situation in Great Britain and Ireland.

To the translators, Gordana Avramovic and Dr Georges S Kaye.

Contents

Title Page

Dedications

A translator’s note

Preface

Acknowledgements

About the translators

About the author

Foreword

Introduction

1. The problem of Lyme and other crypto-infections

Lyme disease: a critical moment in understanding infectious processes

Medical craze or patient insanity?

The theory of ‘spontaneous generation’ of disease

The ‘planned disappearance of infectious diseases’

Ticks, ethics, antibiotics and politics

The concept of ‘crypto-infections’ – the missing link between Pasteur and Freud

2. The need for accurate diagnosis

Listen to what patients say

Incorrect treatment recommendations

Diagnostic issue 1: Calibration of blood serum antibody tests

Diagnostic issue 2: There are many different species of Borrelia

Diagnostic issue 3: Some ‘Lyme’ cases may be caused by microbes other than Borrelia

Insights from veterinary medicine

More reliable tools needed to better identify causes of disease

3. The certainties of a handful of experts in a world of uncertainties

The gap between scientific publications and official recommendations

Lyme disease and the reign of censorship

A world of ‘certainties’ is begoinning to show some cracks

4. The history of ticks and spiral-shaped bacteria

Spiral-shaped bacteria

The Borreliae

Our tick friends – vectors of infections

5. The history of Lyme disease

The disease in Europe

The disease in America

6. Recent research developments

British and American interest in Lyme disease

The French resistance is organised

American experts punished or discredited

The IDSA ‘expert’ group threatened but ‘above the law’

The French health authorities slowly amend their recommendations

American health authorities acknowledge Lyme disease as an epidemic

Where are we now?

7. The persecution of those at the forefront of Lyme disease research

The death of Willy Burgdorfer

My trip to Norway

A military conspiracy theory about Lyme disease

8. My experience with Lyme disease and other crypto-infections as a physician and researcher

Early work with Raymond Bastin and Eric Dournon

The first National Reference Centres for legionellosis and Lyme disease

Lyme disease and autoimmune diseases

The years of AIDS, mycobacteria and viral hepatitis

How Lyme disease got into my career

What did other doctors think?

The use of natural medicine and its return in medical practice

What happened to medical microbiology research?

Lyme and psychiatry

We need to revisit dogmas

9. Crypto-infections

Many diseases could be triggered by ‘crypto-infections’

Unexpected insights into autism, schizophrenia and Alzheimer’s disease

Could other ‘non-infectious’ chronic conditions be caused by crypto-infections?

My experience with treating crypto-infections

How to treat crypto-infections in the absence of research?

The role of the environment and ticks in the genesis of crypto-infections

Cancer and crypto-infections

The supposed ‘anti-inflammatory’ effect of some antibiotics

10. When medical methodology replaces medicine

The over-reliance on randomised studies

Culture and medicine

The difficulties of diagnosing and treating crypto-infections

There are no simple answers

Infectious diseases versus clinical microbiology

11. Hope

Raising awareness

Current treatment recommendations

Mobilising the pharmaceutical industry

Changing paradigms in research

12. Towards a global recognition of chronic Lyme disease

Scientific evidence and lack of good clinical research

The French National Academy of Medicine

The Ad Hoc Committee for Health Equity in ICD11 Borreliosis code

Professors in Europe

The need for a multidisciplinary approach

French health authorities launch a national plan

Phytotherapy, a strategy for the future

Deniers of Lyme disease are losing the battle but continue to fight on

Global collaboration is the way forward

References

Scientific articles

Books

Weblinks

Index

Also from Hammersmith Health Books

Copyright

A translator’s note

The embrace of intelligence is proffered with two arms: that of curiosity and that of scepticism. Within such latitude one would expect a good man, bearing sound ideas and displaying the patience of Job, to succeed. Not a bit of it! The history of medicine, of science, and generally of thought and human endeavour, is replete with tales where good turns or good deeds or good ideas ‘do not go unpunished’.

The physician William Harvey in the early seventeenth century paid the price. In an epoch-making tome, Harvey fulsomely described the proper operation of the circulation of blood around the body, the first to counter 1500 years of orthodoxy dating back to Aristotle. The philosopher Bacon fired Harvey in punishment for heresy: Harvey had dared to question the masters of medicine.

Semmelweis in the mid-nineteenth century fared worse: he died in misery, having lost his wits and health long after he lost all else. It was several decades before the proof Semmelweis gave the world was accepted, that puerperal fever, the killer of millions of women in childbirth through the ages, proceeded from the accoucheur’s hands being infected by the common Streptococcus bacterium – several decades, during the span of which many more women died who might have survived. The pity of it. The shame of it.

Even before fully entering Professor Perronne’s narrative, whilst merely gliding over it, the similarity between Semmelweis’s world and struggle, and our own – terrifyingly closer to us than Semmelweis’s – leaves one incredulous. From contemporary colleagues and scientists, we had expected better. With greater force yet, we do and shall expect better. Again and again Semmelweis analysed the evidence and demonstrated his thesis, beyond the criminal threshold of proof; again and again the chorus of Polly-Burgdorfer-Scrimenti echoed this struggle trying to prove the truth about Lyme disease.

We take heed, and hail Professor Perronne’s narrative. We thank him for his part and role in persisting and explaining the truth. We applaud his candour and clamour, and, through the professor’s work, we celebrate the many who refused to be gagged or constrained on the long road to seeking answers.

Dr Georges S Kaye, internal medicine specialist

London, UK

Preface

A global scandal, one of the most astounding in the history of medicine, is now attracting the attention of media and public to Lyme disease and other hidden or ‘crypto’ infections. The primary cause of Lyme is known: a bacterium transmitted by ticks. There are effective treatments to fight it. Yet for years, health authorities and a large section of the medical community colluded (and widely continue to collude) in refusing to recognise the reality of this chronic infection and the sequelae which are often life-threatening. As a consequence of this neglect, a great number of people who are suffering tremendous pain and unimaginable distress have languished in diagnostic limbo for years. More often than not, these patients have been labelled as fabricators, hypochondriacs or plain lunatics. Millions of patients worldwide, gripped by symptoms caused by hidden, chronic infections, end up in psychiatric care or are condemned to endure stultifying and ineffectual treatments, or inappropriate surgical interventions.

Such a tragedy invites us to reflect upon the victims abandoned to terrible suffering and surreal courses of treatment, but it must also make us recognise the courage and determination of those doctors and scientists who identified the disease, who have explored its causes, and who have developed effective treatment strategies. Beyond this it behoves us to confront a crucial question: why is there such collective dissembling, or at least neglect, on the part of experts and governments alike and how can we attempt to put an end to this injustice?

Answers to such questions open up prospects of unexpected depth and richness. Whilst it would be absurd to posit a conspiracy of ill-will on the part of authorities worldwide, and specifically in America, it is nevertheless important to analyse this narrative, and seek accountability on the part of the institutions that steer, evaluate and control medical research and therapeutic trials. This is no trivial task. To such institutions and procedures falls the awesome responsibility of acting as guarantors – our guarantors – of scientific objectivity, probity and rigour. In the case of the Lyme episode, rigour turned into rigidity, and procedures morphed into dogma, to the point of thrusting us into blindness. The case of Lyme disease demands fresh perspectives and, to say the least, minds less closed and insights less constricted. In short and in Bachelard’s analysis: ‘Beware lest scientific tools turn into impediments – epistemological obstacles’!

How do we achieve a deeper understanding of such processes without forfeiting the benefits of the current system’s framework? A reflection on this subject is an opportunity better to define the characteristics of a group of imperfectly understood maladies, caused, as is Lyme disease, by hidden infections, for which I here propose the designation of ‘crypto-infections’.

Christian Perronne

Acknowledgements

On behalf of countless patients, I would like to warmly thank all the sufferers in France and around the world who are leading the fight for the recognition of chronic Lyme disease and related diseases – patients whose daily courage commands respect and admiration in the face of a mountain of denial and rejection. Many are enduring a terrible fight, without help.

Then I would like to thank the few doctors in my hospital department who have believed me and helped in the care of the sick.

I would also like to thank the nurses, nurses’ aides, and secretaries of the department who did not fully understand this complex disease, or these patients who were so difficult to understand and treat, but who trusted me, especially after seeing some spectacular results in severely disabled patients.

Other doctors I would like to thank are:

The courageous general practitioners, in particular those of the Chronimed group, who, under threat from France’s Department of Social Security, treated and saved tens of thousands of patients, often in distress.

Professor Luc Montagnier, Nobel Prize winner in physiology or medicine, for his support for the cause of Lyme disease and associated diseases.

Dr Philippe Bottero, a courageous pioneer condemned for having saved thousands of sick people.

The doctors in the Department of Social Security and in the Order of Physicians, still a minority and obliged to remain discreet, but who show me their increasing solidarity.

I would also like to thank these patient support associations

The first patient support associations: the Tiquatac.org site, the Nymphéas, SOS-Lyme and Lyme Éthique, true pioneers who, without any means, cleared the ground and made certain political figures aware of the problem.

The first major association, France Lyme, which provided a national dimension to the debate.

Other associations like Lympact, Lyme Sans Frontières (Lyme Without Borders), the Relais de Lyme, le Droit de Guérir, Orne Lyme, Vaincre Lyme, Lyme Team.

Judith Albertat, former president of Lyme Without Borders, who gave a new impetus to the fight during her presidency.

The French Federation Against Tick-borne Diseases, bringing together patient representatives (France Lyme, Lympact and Le Relais de Lyme) with a scientific council composed of doctors and researchers. Its slogan ‘patients, doctors, researchers together’ is a superb model for advancing the cause of patients with serenity and on a scientific basis.

My thanks too to the leaders and numerous volunteers of the French Federation Against Tick-Borne Disease (FFMVT) who, while fighting against their fatigue, their pains and their handicaps, joined me to carry out remarkable work, in particular to help others in distress.

I am indebted to the scientific journals, journalists and the media, in particular the medical and scientific journals and journalists who have had the courage to publish works diverging from the imposed ‘dogmas’:

Chantal Perrin, journalist, who produced the first major report on the disease and the associated scandal for France 5 television. The report was a huge national and global success and paved the way for media debate. Chantal later wrote a remarkable book on the subject with Roger Lenglet.

Gwendoline dos Santos of the newspaper Le Point, who, through her talent, inaugurated a series of spectacularly successful media events, triggering an epidemic of downloads. This public enthusiasm for the Lyme cause was confirmed by the enormous impact of several reports by other journalists on different television channels and in several newspapers.

Isabelle Léouffre from Paris Match who was able to highlight the poignant testimony of patients.

Emmanuelle Anizon from L’Obs, who, aware of the scale of the problem, mobilised herself and produced a major report that made it possible, through its fallout, to publicise the Lyme disease problem throughout France, with a relay in all national newspapers.

The many doctors who signed a petition published in L’Obs.

The courageous sick, more and more numerous, who agreed to come out of the shadows to testify to the media.

I must also thank the political figures who gradually saw the immense repercussions on the health of their fellow citizens and who joined the fight.

My thanks too to the patients, doctors and researchers from all over Europe but also from other continents with whom I am in regular contact.:

Professor Michel Franck, from the veterinary school in Lyon who developed research projects on PCRs.

Jenna Luché-Thayer for her extraordinary global combat in the defence of human rights. Her commitment at the head of a global coalition is very powerful.

Professor Jack Lambert from Dublin, for his intelligence, his commitment, his desire to work with me and other university colleagues to develop scientific research, education and communication in Europe. Thanks to Jack Lambert and his financial help, this English version of my book exists.

Dr Georges Kaye, specialist in internal medicine in London, who speaks perfect French and English. Georges Kaye called me a few weeks after the publication of my book in 2017 to tell me that he read it with enthusiasm. He came to see me in Paris and started the translation of my book. We remain friends.

Gordana Avramovic, research project manager at the University College of Dublin, Ireland, who is working with Jack Lambert, and accomplished a feat by translating the main part of this book in a short period of time.

My wife, Dr Véronique Perronne, specialist in internal medicine and in infectious and tropical diseases, who joined me in 2018 in my department to help me in the management of chronic Lyme disease and other crypto-infections. Cheerful thanks for her huge help and support.

My thanks too to the French but also English, Swedish, Finnish, Polish and Australian doctors whom I helped in their defence during the violent attacks against them by the health authorities of their countries.

I would also like to thank this institutional leader who wished to help advance research: Ms Marisol Touraine, former Minister of Health, and her advisers for having become aware of the problem and deciding to act

About the translators

Gordon Avramovic MA Linguistics, BSc is Research Project Manager at University College Dublin, Ireland.

Dr Georges S Kaye is a specialist in Internal Medicine running a private general practice in London, UK.

About the author

Christian Perronne, doctor of medicine and of science, is Professor of Infectious and Tropical Diseases at the Faculty of Medicine Paris-Île-de-France-Ouest, University of Versailles-Saint-Quentin-en-Yvelines (UVSQ), Paris-Saclay. He was Head of the Department of Medicine at the Raymond-Poincaré University Hospital in Garches (Hauts-de-Seine) of the Greater Paris University Hospitals group (Assistance Publique-Hôpitaux de Paris) from 1994 until December 2020, when he was asked to step down because of his public statements on the management of the Covid crisis.

A former graduate of the Pasteur Institute in bacteriology and virology, he was Deputy Director of the National Reference Centre for tuberculosis and mycobacteria at the Pasteur Institute in Paris until 1998. He is former President of the Collège des Universitaires de Maladies Infectieuses et Tropicales (CMIT) and co-founder and former President of the Fédération Française d’Infectiologie (FFI, French Federation of Infectiology).

He was president of the French National Immunization Technical Advisory Group (CTV) from 2001 to 2007, the committee in charge of national vaccine recommendations. At the Medicines Agency (currently National Agency for the Safety of Medicines and Health Products, ANSM), he was a member of the anti-infective treatment group from 2000 to 2006 and chaired the working group to develop national evidence-based recommendations for the proper use of antibiotics in respiratory infections.

He has been principal investigator of several National AIDS Research Agency (ANRS) clinical research trials on HIV infection and viral hepatitis. Christian Perronne was President of the Conseil Supérieur d’Hygiène Publique de France (Superior Council for Public Hygiene of France). He was Chairman of the Communicable Diseases Commission of the High Council for Public Health (HCSP) from 2007 to March 2016, which develops recommendations for public health and vaccine policy for the Ministry of Health. He was President of the National Council of Universities (CNU), Infectious and Tropical Diseases subsection from 2007 to January 2016. He was a member of the scientific committee of the Institute for Research in Microbiology and Infectious Diseases (IMMI), a thematic institute of the Institut National de la Santé et de la Recherche Médicale (INSERM, National Institute for Health and Medical Research) from 2009 to 2013.

He was a member of a research unit at the Pasteur Institute and INSERM: UMR 1181 ‘Biostatistics, biomathematics, pharmaco-epidemiology and infectious diseases’ (Bio2PhEID lab). He was Vice-President of the European Expert Group on Immunization (Etage) at the World Health Organization until 2015. He was Vice-President of the French Federation against Tick-borne Diseases (FFMVT). He is author or co-author of over 300 referenced international scientific publications.

Foreword

This book tells of the experience of a French ‘Lyme’ doctor, Christian Perronne, and readers may think it is a uniquely Gallic experience. Sadly, however, it is not. Every ‘Lyme’ doctor worldwide has had very similar, if not identical, experiences to those of Professor Perronne. And many infectious disease doctors who treat Lyme patients find they are working in a ‘vacuum’ without support; they are often ‘isolated’ from their peers because of their ‘belief’ in chronic Lyme, or they cannot perform research studies because all of their research proposals are turned down. Yet they come up with the same observations and conclusions that have been deduced in France – that patients are not making up these illnesses, that there are many occult infections out there that are being missed by clinicians (crypto-infections), and these infections are the trigger for a cascade of infection, inflammation and autoimmunity. And these infections are being missed for many reasons: poor diagnostics, a lack of willingness on the part of the ‘conventional’ medical community to look beyond their ‘comfort zone’, and other agendas. While Borrelia, the bacterium causing Lyme disease is the prototype, it is clear there are multiple infections that are triggering these conditions; but it is hard to move forward with a plan to better understand, investigate and treat these conditions where there is so much resistance and ignorance, and where there are political dealings behind the scenes by the ‘conventional’ medical community to block progress.

I have been ‘confronting’ Lyme for the last six years in Dublin, Ireland, and have worked with the patient groups in the UK and Ireland to better understand the situation these patients are battling with. The first issue relates to testing: the ‘powers that be’ stand by the fact that tick-borne infections are rare, that the current testing method is accurate, that alternative testing (i.e. by private laboratories within the EU) is not accredited and the tests are not validated, and that patients with ‘Lyme-like’ illnesses can have any one of many conditions including ‘mystery, as yet undiscovered, retroviruses’, but never Borrelia. When I have treated patients with chronic Lyme in my public hospital, my colleagues have refused to support my longer courses of treatment as these do not follow the official ‘guidelines’, but these same colleagues turn around and treat other infections for longer periods of time than set out in the ‘guidelines’ for those infective organisms. Indeed, I have seen many of them give patients in their private practices longer courses of treatment, but they do not do it in the public hospitals.

I have identified that many patients in Ireland have other infections besides Borrelia, especially Anaplasma and Chlamydia pneumoniae but my microbiology ‘colleagues’ in the public system have banned me from testing for other tick-borne infections as being ‘a waste of resources’. When I send samples for testing to the laboratory that these colleagues ‘control’, these samples are thrown away. I have asked for meetings with them to discuss this problem and to educate them; no response.

I was asked by Tick Talk Ireland, the patient group, to review a ‘final draft’ of an Irish health executive document on Lyme disease in Ireland, which stated that ‘even without treatment, Borrelia spontaneously disappears’. When the patient group asked me to ‘challenge’ these statements, I did so; I was subsequently told the document was just an ‘early’ draft and that it was under review. This wording was eventually removed from the Irish Lyme health executive document.

I have attempted to conduct research and get approval for my Lyme research project through my hospital’s research ethics committee. It took 15 months to get approval as ‘one unidentified reviewer’ did not approve of my ‘off licence’ use of antibiotics, and I had to get a letter from another infectious disease consultant to say that he agreed with me doing research on this subject. This has never, ever been required for any research ethics proposal at my hospital before, and, by the way, my most recent Covid-19 research proposal was approved in a record 15 days (not 15 months!). Why?

I then tried to set up a Lyme resource centre in Ireland, focused on educating the public, training GPs and developing research; I announced plans and set up a launch. My public hospital ‘colleague’ went around and recruited a cadre of consultants, and even the hospital CEO, who were misinformed about the goals of the LRC. I was banned from conducting the launch on hospital premises and had to book a hotel nearby to conduct the launch, attended by dignitaries and patient groups from Ireland and the EU. Why?

I have conducted training sessions for GPs on tick-borne infections as I have seen many patients coming in to see me with a missed Lyme diagnosis, often instead diagnosed with ‘cellulitis’ or ‘ringworm’ when it was clear they had had a tick bite or had been in a tick-suspect area and had systemic symptoms consistent with tick-borne infections. I had many patients coming down from Donegal, in the northern part of the Republic, with these unexplained symptoms, and a group of these rural people who had been chronically unwell but with negative Lyme tests, and who had been ‘fobbed off’ by their GPs as ‘psychiatric’ or making up their illnesses. I saw many of these people who had a clear history of tick-bite exposure yet whose GPs would not even entertain Lyme as a possibility and refused to even conduct a Lyme test, having already caterogised them with another ‘blanket’ diagnosis: fibromyalgia, chronic fatigue syndrome, functional neurological syndrome, chronic pain syndrome and others. Furthermore, in Donegal, where I found a cluster of chronically infected patients near GlenVeigh, who had these ‘mystery’ illnesses, and who got better with my longer course treatment, I was asked to talk on the Donegal radio station. I mentioned that I thought there were many missed diagnoses and that GPs were not adequately trained in tickborne infections.

I have conducted studies on Borrelia in ticks in Donegal, and we found about 6% of ticks were positive for Borreliae, including the cause of relapsing fever borreliosis. Either way, these patients were sick, and I believed in the genuineness of their illnesses; I was treating them and planning a training programme for GPs in Ireland (and the UK). I had done the same for STIs (sexually transmitted infections) in Ireland and have trained over 1000 GPs and nurse specialists over the years in these infections, with good success and appreciation.

Shortly after the radio interview, I was visited by a senior member of UCD (University College Dublin) who had received a complaint from a GP who said I had ‘slagged off’ the GP on the radio. I had to write an apology. I also received a very nasty letter from a GP group in Donegal, saying they did not support the way I diagnosed Lyme disease nor my approach to treatment, and they would not work in partnership with me to get their patients better. This GP group had no alternative diagnosis to offer, but clearly their impression was that the patients were ‘nuts’ and the cause of their symptoms could not be Lyme disease or any other associated tick-borne infection. Thus, while I teach the GPs about STIs, and this is widely appreciated, when I try to teach about Lyme disease, many reject this offer. They stand by the ‘mantra’ of the health authorities in the UK and Ireland that discount and discredit tick-borne infections as ‘rare’ and often ‘made up’ by patients. It should, however, be noted that studies conducted by UCD researchers have shown that ticks on animals in Ireland are carrying Borrelia, Anaplasma and Babesia.

Not all GPs have been resistant. A number in Donegal who accept that their patients have these ‘mystery’ illnesses and are willing to entertain the idea that there may be an underlying infection despite negative tests, have worked together with me and their patients to get them better.

What then is the current status of Lyme disease and other tick-borne infections in Ireland? And what is the thinking of infectious disease specialists here? As in France and most other countries, it is not encouraging. Early on I reviewed a number of teenagers who I thought had Borrelia infection. They had positive test results from private laboratories and convincing histories of tick-borne infections. I was visited by one of the IDSI (Infectious Diseases Society of Ireland) doctors, who warned me off seeing these patients, and indeed pointed out to me that one of the patients had been hospitalised with a problem that was a parental one – a sort of ‘Munchausen’s syndrome by proxy’. This was a scary informal meeting where I felt quite threatened, but why blame the parents?

Later, I was asked by the Irish senate (the ‘upper house’ of Ireland’s Oireachtas), by their medical subcommittee, to provide an introduction to the hearing on tick-borne infections. This meeting was set up to give the Irish patient group, Tick Talk Ireland, a forum to present the difficulties they were having, including neglect and indeed abuse at the hands of many GPs and consultants in Ireland when they raised the issue of ‘Lyme disease’. As requested by the chair of the Medical Committee, I was asked to provide my presentation ahead of time, which I did. I had planned to leave this meeting within 15 minutes, to go back to patients at my hospital who had booked appointments that morning. During my 10-minute introductory statement, members of the Department of Health and about 10 consultants from IDSI, arrived at the hearing and walked in ‘en masse’. Were they there to support the patient groups? Following my introduction, I was then asked by the Medical Committee to respond to a signed petition from all members of IDSI (except one, me!), which gave a ‘narrative’ on Lyme disease. It basically said they supported the Swiss consensus guidelines of 2016 that stated there was ‘no such thing as chronic Lyme’ and that a short course of treatment cured most people. As I had never seen this IDSI petition (I was somehow omitted although I am on their mailing list as an IDSI member), I was really unable to discuss the Swiss guidelines as I had been denied the courtesy of receiving the document ahead of the meeting though I had provided my document ahead of time.

(Following the meeting, I reviewed the Swiss guidelines. They refer back to IDSA 2008 communications that fail to recognise chronic, persistent infection. The IDSI petition, put together by my ‘colleagues’, failed to include most of the new data on persistent infection that I had provided in my presentation.)

I finally escaped from the meeting and left to go back to my patients, an hour later than planned. I later heard the ‘Spanish Inquisition’ against Tick Talk Ireland continued for a few more hours, all recorded on Irish TV and later distributed on YouTube. An Irish political champion, Mark McSherry, later told me, ‘We were ambushed’.

I lost a lot of sleep over this event, having been ‘stabbed in the back’ by my ‘colleagues’. And indeed they had done the same to the patient groups. Why would members of the Irish Department of Health and the medical consultants of Ireland show up in such force? I thought, as public servants, we were there to support our taxpayers and especially our sick ones, and help them to get better. I guess not.

I have applied for research grants through the EU to study tick-borne infections, most recently for an ERC grant for ‘high risk’, new innovations. I have previously received $1.2 million funding for HIV at the National Institutes of Health, and c.€2.4 million from the Third Health Programme EU for hepatitis C. My application to better understand tick-borne infections and chronic infection was strongly supported by three of the reviewers, but one reviewer scored me so low that my grant became ‘non-competitive’, disqualifying me from re-applying to the EU for this project the following year. This reviewer’s comments, which were very personal in nature, included the following: ‘The PI appears to be a follower of the movement ‘Lyme-literate physicians’ and International Lyme and Associated Disease Society’ that identifies ‘chronic Lyme’ in many more individuals than would be justified by the responsible and rational application of consensus guidelines for the diagnosis and management of this and related infections. The PI is entitled to his opinions and the promulgation of these as he sees fit, but for scientific proposals of merit such conjecture should be backed up by empirical evidence and a more vigorous research plan.’

Consequently, I can well understand Dr Perronne’s experiences with being ‘ostracised’ within France, with patient groups not being supported and with many patients being ridiculed. (The doctors in Ireland say this never happens but the patient groups here have put together a list of comments made, and they are not kind.) And all Lyme-treating clinicians, not just in France but worldwide, are in a fight for better understanding of these mystery illnesses with no support from the wider medical community.

I have recently put together a position paper on congenital Lyme disease which has been rejected by a number of UK journals. At the same time, a journal article recently accepted by the British Medical Journal (BMJ) which ‘summarises’ current knowledge about Lyme, once again rejects the possibility of chronic Lyme infection and, when reviewing the literature provided by ILADS (the International Lyme and Associated Diseases Society), states that the authors do not accept the ‘evidence-based’ publication provided by ILADS though this brings together all of the updated literature on Lyme infection. Instead, the BMJ review regurgitates the IDSA publication from 2008, re-regurgitated in the Swiss guidelines in 2016, and now re-re-regurgitated in 2020 and accepted by the BMJ. Who are the reviewers that accepted this publication? Maybe the same ones who are on the EU ERC committees? It is clearly a closed shop.

So what keeps Dr Perronne and myself and other ‘Lyme-literate physicians’ going? We clearly do not enjoy these attacks and ambushes and behind the scenes ‘character assassinations’. The only tangible reward is that of seeing