Experts explained the situation in 2022:
The current controversies over the chronic form of LD remind us of the strength of the population’s contemporary disenchantment with science. Both the general population and the medical community are disappointed in modern science, which generates a multitude of highly specialized, fragmented, temporary, and often contradictory results, especially in the biomedical field. This is especially the case in the French context of the Lyme controversy.
In 2018, French scientific societies and the National Academy of Medicine refused to approve the recommendations on LD published by the Haute Autorité de Santé [HAS], a French government agency. Indeed, French scientific societies (including French College of General Practitioners) did not recognize the new clinical entity (created under pressure from patient associations) called “symptom/polymorphic syndrome persisting after a possible tick bite” arguing that the term was not based on scientific evidence and opened the door to overdiagnosis and inappropriate antibiotic prescriptions.
Below are translated versions of three press releases issued by the National Academy of Medicine in France.
- 24 French Scientific Societies Mobilize to Protect Patients
- 24 French Medical Societies Endorse New Lyme Guidelines, Support for Patients
- Chronic Lyme disease: A scam that should be condemned!
July 2, 2018 Press Release:
High Authority of Health (HAS) update on Lyme disease: Reactions and disappointment of the National Academy of Medicine “
In a previous press release (1), the National Academy of Medicine wished to draw the attention of the authorities and the public to the abuses and deceptions concerning Lyme disease. Having recalled the existence of scientifically established facts, it had insistently denounced empirical assertions devoid of any scientific basis, such as the existence of chronic Lyme disease, the attribution of numerous ill-defined and subjective polymorphic symptoms to this infection, and the claimed efficacy of prolonged treatments combining antibiotics and various drugs.
It solemnly wished to warn public authorities against the temptation to give in to the blackmail of pressure groups by deviating from scientific data and strongly condemned the disinformation campaigns conducted by the proselytizers of the doctrines of an American association, the ILADS (International Lyme and Associated Diseases Society).
On June 25, 2018, the High Authority of Health (HAS) released a “recommendation of good practice for diseases transmitted by ticks”. This text claiming to “overcome controversies and propose a solution to everyone” was written by a working group bringing together representatives of the French Infectious Diseases Society (Société de Pathologie Infectieuse de Langue Française, SPILF), different medical disciplines as well as militant associations grouped in the Fédération Française contre les Maladies Vectorielles à Tiques (French Federation against Tick-borne Diseases) and acquired the theories of ILADS.
After reading this document, the Académie de Médecine wishes to react strongly and to express clearly its deep disappointment. Far from clarifying the situation, the HAS, wanting to satisfy everyone, satisfies no one. It maintains the ambiguity, in particular on the notion of chronic Lyme, through what it calls “symptomatology/polymorphic persistent syndrome after tick bite or SPPT”. The HAS implicitly recognizes the existence of such a pathology without the slightest proof, with, as a consequence, proposals for heavy management involving numerous, costly and often useless investigations. As for the desire to create “specialized centers for tick-borne diseases”, the Academy wishes to express its most extreme reservations about an expensive proposal that tends to disavow the expertise of existing infectious and tropical disease services.
(1) Press release of October 26, 2017: The Academy of Medicine denounces deception about Lyme disease.
October 26, 2017 Press Release:
The Academy of Medicine denounces deceptions about Lyme disease
Commission on Infectious and Tropical Diseases
Lyme disease is a growing concern for a part of the French population, fanned by the dissemination of assertions without scientific basis, in particular by the “French Federation against tick-borne diseases”.
To answer the questions of confused patients, a Plan to fight Lyme disease and tick-borne diseases was launched at the end of 2016 by the Ministry of Social Affairs and Health. This plan calls for the development of a national protocol for diagnosis and care in order to, among other things, limit the wandering of patients suffering from chronic, often subjective symptoms that have been attributed to “Lyme disease” without any evidence.
The Academy of Medicine, alerted by the rumors spread by pressure groups, wishes to firmly clarify the position set forth at its meeting on September 20, 2016 .
➣ First, it recalls the existence of scientifically established facts:
- Lyme disease is an infectious disease due to a bacterium of the Borrelia burgdorferi sensu lato complex transmitted to humans by the bite of an infected tick. It is characterized clinically by a three-phase evolution: primary phase of local diffusion of the bacterium, secondary phase of tissue focalization, tertiary phase in which inflammatory and dysimmune phenomena may occur, the infection healing spontaneously in the primary stage in 70 to 80% of cases.
- The diagnosis of Lyme borreliosis is based on the clinic in the primary phase and then, in the subsequent stages, on the clinic and serology. Serology combines two methods: ELISA tests for screening, and immunoassay (Western blot) for confirmation. The tests currently available have a sensitivity of 80 to 95% and a specificity of over 90%. Serology is most useful in the secondary phase, with positivity rates of 70-90%. Antibodies may persist for several years, even after effective treatment.
- Antibiotic therapy in the primary phase results in rapid and definitive cure. The clinical effectiveness of treatment is slower in the secondary and tertiary phases.
➣ It points out that some claims have no scientific basis
- “Chronic Lyme disease”, which is said to be linked to the persistence of the pathogen in the body for years, is based on the unscientific hypothesis of a “crypto-infection” used to justify the use of prolonged antibiotic treatments.
- The attribution of ill-defined, subjective symptoms (fatigue, cramps, muscle pain, tinnitus, sleep or mood disorders, memory loss, etc.) to this “chronic Lyme disease” is not based on any evidence.
- The calibration of ELISA tests is necessary to limit the false positive rate to 5%. Laboratory managers must resist the demand of uninformed practitioners, anxious to confirm their diagnosis of “chronic Lyme disease” at any cost, including by modifying the thresholds of positivity of the tests, in front of undetermined clinical pictures.
- The claimed efficacy of prolonged antibiotic treatments, sometimes combined with antiparasitic, antifungal, or anti-inflammatory drugs, is not based on any conclusive experimental data and is not supported by any randomized controlled clinical trial. On the other hand, such prescriptions are dangerous for the patient, consequential for the microbial ecology, risky for public health and costly for health insurance.
➣ It calls on doctors not to feed the anxiety of confused patients by making them believe in the diagnosis of “chronic Lyme disease” and invites public authorities to be attentive to this drift.
- In disregard of any scientific approach and based on their own personal conviction, doctors, self-proclaimed “Lyme doctors”, some of whom are subject to conflicts of interest, maintain the anxiety of many patients in diagnostic wandering and feed their unfounded recriminations by echoing in Europe, particularly in France, the ILADS (International Lyme and Associated Diseases Society), an association not recognized by the official authorities across the Atlantic.
- Faced with patients suffering from chronic, unlabeled symptoms and who feel neglected, physicians must not give in to the easy diagnosis of “chronic Lyme disease” nor subject them to prolonged, useless and dangerous treatments. These patients must be able to benefit from multidisciplinary diagnostic management. “Lyme” is the wrong medical answer to the legitimate question of a suffering patient.
- The national protocol for diagnosis and care under the Plan to fight Lyme disease and tick-borne diseases should be based on scientifically established facts and should not be influenced by assertions that are now scientifically unfounded.
In conclusion, the Academy of Medicine:
- Confirms the validity of the current national recommendations emanating from the 16th Consensus Conference of December 13, 2006 “Lyme Borreliosis: diagnostic, therapeutic and preventive approaches” recalled by the High Council of Public Health in its report of March 28, 2014 and warns against any scientifically unfounded request for revision.
- Solemnly warns the public authorities who, in order to respond to the concerns of patients deceived by pressure groups, would give in to the blackmail of which they are the object without scientific reference and would thus bear a heavy responsibility in the adoption of inappropriate measures.
- Disapproves of the attitude of practitioners who give in to the deceptive ease of the diagnosis of “chronic Lyme disease” when faced with patients in diagnostic errancy.
- Severely condemns the misinformation campaigns led by pressure groups seeking legal recognition and financial compensation for a non-existent harm.
Communiqué: September 20, 2016 meeting
Lyme disease. Statement of the National Academy of Medicine [France]
KEY-WORDS: LYME DISEASE. TICKS
A controversy is currently developing and amplifying in France as well as in the USA on Lyme Disease (LD). The National Academy of Medicine decided to devote its September 20, 2016 session to this topic. At the end, the following remarks and proposals were made:
1) LD, in the strict sense of the term, is an infectious disease that is well characterized microbiologically (Borrelia), epidemiologically, clinically, serologically, even if diagnostic tests are, to date, imperfect. The sensitivity of Borrelia to antibiotics allows for effective treatment, provided that dosage and duration are respected, particularly in early forms. Erythema migrans is sufficient to make the diagnosis, serological confirmation is not necessary. The secondary forms (the germ’s dissemination phase) include neurological, articular, cardiac, and cutaneous localizations in a variable way…
2) Difficulties may appear in the tertiary phase corresponding to a form that is not diagnosed early and/or not treated, characterized by signs that are most often objective cutaneous, neurological or articular. The response to antibiotic treatment is slower and more uncertain because of the immunological involvement at the origin of the symptoms.
3) The controversies surround what some people call “chronic Lyme”, which corresponds to a late phase and which is best compared to the tertiary phases of the infection. They are characterized by clinical signs that are most often subjective and persistent (joint and muscle pain, headaches, asthenia, sleep disorders, memory loss, etc.). It is the serological data, sometimes positive, sometimes uncertain or even negative, that would lead to the incrimination of LD.
4) The debate deteriorates if one tries to include in LD neurological pictures similar to Multiple Sclerosis (MS) or Amyotrophic Lateral Sclerosis (ALS), or even to Alzheimer’s disease… whether the serology is positive, doubtful, or even negative!
5) To answer the basic question concerning the responsibility of LD in the “chronic forms”, several elements must be underlined:
— It is necessary to recognize the polymorphism of LD, which makes it a complex infection, like another spirochetosis, syphilis, was in its day.
— Even if Borrelia are extra- and intra-cellular, prone to modification, to partially escape the immune system, even if excessive immune reactions may occur in these “late forms”, it is difficult to understand why this infectious disease with a sensitive germ would be an exception, to the point of requiring months of treatment or more, successive courses of treatment, or combinations of anti-infectives with antiparasitics or antifungals or with immunomodulators, prescriptions that some people advocate.
— Diagnostic tests are undoubtedly imperfect, but the international community recognizes the validity of some of them, recommended in all countries, in Europe, including Germany, by official organizations.
— It should be remembered that a positive serology for a germ only indicates previous contact with the said infectious agent and in no way necessarily indicates a progressive infectious disease.
— The supposed effectiveness of prolonged treatments or treatments combining various molecules has never been demonstrated in the scientific literature. On the contrary, a recent Dutch study published in the New England Journal of Medicine has shown the inefficiency and even the dangers of prolonged treatments in these “chronic forms”.
— The multiplicity of Borrelia, the existence of other infectious agents also transmitted by ticks is also to be taken into consideration.
It is important, until duly and scientifically proven otherwise, to remain within the limits assigned to the disease by giving the patient, in case of doubt, an antibiotic treatment according to the right rules: choice, duration and dosage.
LD could be the wrong answer to a legitimate question of suffering patients, dissatisfied by the management of their disorders, who want to be listened to and who are given false hopes.
It is important to progress by proposing :
— the continuation of research on the responsibility of other infectious agents;
— the development and improvement of various diagnostic tests;
— above all, the implementation of controlled therapeutic protocols, based on rationalized choices of molecules versus placebo, with volunteer patients selected to constitute homogeneous and comparable groups. This difficult and lengthy process is both reasonable and ethical.
Bull. Acad. Natle Med, 2016, 200, no. 7, 1349-1350, meeting of September 20, 2016