Background
In 2018, French scientific societies and the French National Academy of Medicine refused to endorse flawed recommendations about Lyme disease released by The National Authority for Health, a French government agency that was influenced by promoters of chronic Lyme pseudoscience.
The recommendations included creation of a new entity “symptoms/persistent polymorphic syndrome after a possible tick bite” (SPPT). Since this entity is not supported by science, the societies requested deletion of the section that defined it.
Infectious disease expert Dr. Pierre Tattevin further commented about SPPT:
More annoying: it had the disadvantage of anchoring patients in the belief that all their ills came from this tick bite, which really does not serve them (anchoring is the psychological mechanism that corresponds to the difficulty of depart from a first impression).
The French Federation against Tick-borne Diseases (FFMVT) is a pseudoscience group that promotes the unrecognized chronic Lyme diagnosis in France.
More on FFMVT: Psiram FFMVT wiki page and French Association for Scientific Information FFMVT discussion
In 2019, in an exhaustive effort to help patients, the medical societies released comprehensive science-based Lyme disease guidelines and helped set up reference centers for management of tick-borne diseases. But attempts to help patients who receive a fake chronic Lyme diagnosis only enraged the pseudoscience activists.
Below is LymeScience’s English translation of a July 10, 2019 press release from the 24 medical organizations.
Press release: 24 learned societies mobilize to protect patients
Paris, July 10, 2019 – Chronic pain, persistent fatigue, mood disorders, burnout. These symptoms may be associated with many diseases other than Lyme disease. Faced with diagnostic odyssey and patient suffering, and faced with insufficiently explicit HAS recommendations, 24 learned societies are asking health authorities to clarify their position in the interest of patients.
Understand the stakes of the controversy over Lyme disease
In recent weeks, the controversy over the care of patients who fear Lyme disease has intensified. The publication of the recommendations of the 24 learned societies representing the most concerned medical specialties, followed by the announcement by the Ministry of Health on July 3 of the 5 reference centers for the management of vector-borne tick diseases selected by the regulatory authorities, seem to have hardened the positions [of the chronic Lyme advocacy groups].
However, the selection of these 5 reference centers (out of 10 candidate centers) should have calmed the situation down, as these centers were chosen for their scientific quality and expertise in conducting research projects, their ability to work in a multidisciplinary manner and their commitment to ensuring democratization of healthcare.
A situation with consequences for the care of patients
Unfortunately, this situation is currently a source of confusion for patients and practitioners because, although many patients who fear being affected by Lyme disease suffer from painful, sometimes disabling chronic symptoms (pain, fatigue, mood or concentration disorders, professional exhaustion), these are not very specific and can be associated with many diseases.
In response to this situation, a responsible and benevolent medical approach involves trying to understand the origin of these symptoms by collecting their circumstances of appearance and history, the diagnostic procedures carried out (tests, assessments, etc.), and previous treatments and their effectiveness. At the end of this evaluation, the diagnosis chosen will be different from Lyme disease in the vast majority of cases. For patients who fear having Lyme disease and for whom the diagnosis is ruled out, this medical approach is doubly beneficial:
- It allows them to be redirected to a management adapted to their disease;
- It prevents them from repeating multiple and prolonged antibiotic therapies or other non-scientifically validated therapeutic approaches for months or even years, which studies have shown to be of no benefit in relieving patients, and which are associated with potentially very serious complications.
The French Federation against Tick-borne Diseases (FFMVT), opposed to this medical approach, represents only a minority of doctors (less than 100, for approximately 300,000 doctors in practice in France), but tries to establish itself as the sole advocate for patients.
The agenda of the 24 learned societies:
- It was in order to defend patients that we refused to endorse the recommendations published by the French National Authority for Health (HAS), whose lack of clarity leads to various interpretations and leaves the door wide open to harmful practices. One year after their publication, this is not a process of intention, but a daily observation.
- It is to defend patients and improve their care that we have developed, in recent years, structures and patient paths that allow collaborative care for those who fear they may have a chronic form of Lyme disease.
- It is in order to defend patients and prevent some unscrupulous practitioners from leading them to believe that they have been misdiagnosed that we ask that it be prohibited to offer tests and treatments that are not validated and that involve patients in unnecessary and counterproductive expenses.
- It is to defend patients and respond to a request from the Director General of Health that we have drafted new recommendations, consensual within medical disciplines, clear, based on scientific data.
The 24 scientific societies below are mobilizing today in the interest of patients. We are asking our health authorities for clarification of their position to help us protect our patients.
Signed:
- Collège National des Généralistes Enseignants (CNGE)
- Collège de la Médecine Générale (CMG)
- Société Française de Dermatologie (SFD)
- Société Française de Rhumatologie (SFR)
- Fédération Française de Neurologie (FFN)
- Société Française de Neurologie (SFN)
- Société Nationale Française de Médecine Interne (SNFMI)
- Société Française de Microbiologie (SFM)
- Collège National des Professionnels en Psychiatrie – Collège National pour la Qualité des Soins en Psychiatrie (CNPP-CNQSP)
- Association Française de Psychiatrie Biologique et de Neuropsychopharmacologie (AFPBN)
- Société de Psychologie Médicale et de Psychiatrie de Liaison de Langue Française (SPMPLLF)
- Société Française de Médecine du Travail (SFMT)
- Société Française de Cardiologie (SFC)
- Société Française de Pédiatrie (SFP)
- Groupe de Pathologies Infectieuses Pédiatriques (GPIP)
- Société Française de Rhumatologie et Médecine Interne Pédiatrique (SOFREMIP)
- Société Française d’Ophtalmologie (SFO)
- Société Française de Mycologie Médicale (SFMM)
- Société Française de parasitologie (SFP)
- Centre National de Référence des Borrelia
- Collège des universitaires de Maladies Infectieuses et Tropicales (CMIT)
- Conseil National Professionnel des Maladies Infectieuses et Tropicales (CNP MIT)
- Collège National des Gynécologues et Obstétriciens Français (CNGOF)
- Société Française d’Etude et de Traitement de la Douleur (SFETD)
- Société de Pathologie Infectieuse de Langue Française (SPILF)
* The list includes 24 scientific societies plus the Centre National de Référence des Borrelia