Reprinted from Médecine et Maladies Infectieuses, 2019
Authors
Dr. Marc Gentilini, Infectious and Tropical Diseases, parasitology, public health, National Academy of Medicine, Paris, France
Dr. François Bricaire, Infectious and Tropical Diseases, internal medicine, National Academy of Medicine, Paris, France
Français: Maladie de Lyme chronique: un scandal médical à condamner!
The Lyme disease controversy keeps on getting bigger, with a hypothetical presentation of “chronic Lyme disease” that some believe to be responsible for late subjective symptoms experienced by patients who are supposedly victims of this chronic infection despite negative examination results and unrelated clinical signs.
This irrational diatribe has been picked up by the media and orchestrated by sectarian supporters of such syndrome – i.e., off the rails physicians, associations proclaiming to “defend” the patient’s interests, and even political figures – and has grown into an absurd and troubling polemic. Untruths told by Lyme pseudo-specialists (i.e., the Lyme doctors) and assertions made by people convinced to have chronic Lyme disease are indeed picked up by the media – too eager to disseminate fake news and happy to see the medical authorities flouted – and work to the disadvantage of patients. Patients are fooled, taken advantage of, betrayed, and even encouraged to physically threaten physicians contesting the existence of such syndrome!
Untruths told by Lyme pseudo-specialists (i.e., the Lyme doctors) and assertions made by people convinced to have chronic Lyme disease are indeed picked up by the media – too eager to disseminate fake news and happy to see the medical authorities flouted – and work to the disadvantage of patients. Patients are fooled, taken advantage of, betrayed, and even encouraged to physically threaten physicians contesting the existence of such syndrome!
Although poorly representative of true Lyme disease patients, “patients’ associations” are now challenging national authorities and calling out to politicians to demand the recognition of their illness. Two European deputies (a journalist and a history and geography teacher) have recently brought before the European Parliament fallacious arguments to try and obtain the recognition of this syndrome as well as financial compensations. Confronted with this outpouring of actions, fake news, and insults disseminated by out-of-control social media, scientific and clinical experts arguing for common sense are struggling to be heard.
We must therefore set the record straight, counter the revival of obscurantism affecting too many patients as well as national authorities frightened by the associated political and legal consequences. We must act effectively to counter the manipulation of a naive public opinion.
Yet, Lyme disease is a well-characterized infection, just like any other infectious diseases, with: an identified causative agent (Borrelia); an identified vector (ticks); well-defined clinical manifestations with three stages; a serological diagnosis that – despite repeated assertions from some people – is valid; a short duration antibiotic therapy, even more effective as Borrelia spp., just like any other spirochete, are highly susceptible to the antibiotic therapy if the choice of molecule and dosing regimen is adequate.
“Chronic Lyme disease” rather reflects the perception of one’s own multiple difficulties as well as the problems of our society. Various disorders have already been suggested to define poorly characterized diseases: spasmophilia, chronic asthenia, fibromyalgia, macrophagic myofasciitis, etc. The French national authority for health (French acronym HAS) recently coined a new syndrome (post-Lyme late disease), muddling a bit more physicians’ and patients’ understanding.
Science questioning, conspiracy theories, and the revival of empirism are now the norm. This scientifically unacceptable and medically detrimental downward spiral must be condemned fiercely. All infectious disease specialists must counter the breakthrough of these violent and even mafia groups (looking for judicialization and financial compensation) as they do not hesitate to jeopardize the life of patients who are looking for an explanation to their illness. Patients are victims of their symptoms as well as victims of unnecessary and useless treatments and associated adverse events. It is unfortunate that some physicians, eager for fame and increased means, are playing along as this is highly detrimental to patients.
We must solemnly warn national authorities of the risk incurred: they are on the verge of unconsciously moving from timely indulgence to fraudulent complicity under the pressure of dissenting groups. Wanting to please everyone while not meeting anyone’s expectations does not ensure the patients’ protection.
Disclosure of interest: The authors declare that they have no competing interest.
See also: Treating ‘chronic Lyme disease:’ Is it medical fraud?