Vous avez dit Lyme ?

"Did you say Lyme?" is a documentary project between in science and society.

SYNOPSIS:

Lyme disease is now recognized as the most common zoonosis in Europe. The medical community is brutally confronting the scale of a long-ignored reality. Immersion into the heart of a case that is about to lengthen the long list of health scandals in the history of medicine.

Foreword

With "Did you say Lyme ?", I will invite the viewer to a deep reflection of today's medicine, emphasizing that, like all sciences : medicine is evolving. The reflection will focus on its current organization: "A medicine that cuts people into organs, is by construction, a medicine that prevents itself from seeing systemic diseases such as Lyme disease" (Pr G. Massard-Guilbaud).

This film will invite to ponderabout the limits of technical medicine, "which no longer believes in the construction of knowledge by the gathering of empirical data" (Pr G. Massard-Guilbaud).

This will also be a perfect illustration of the 2013 Cordier Report (French Health Ministry) which highlights the role of patients as science creators . And beyond the subject discussed , the film will question the freedom to make ourself our own opinion: "how are you making your own opinion?​" (Pr G. Massard-Guilbaud).

LYME DISEASE  : A little of biology ...

"Lyme disease" is an infection transmitted mainly after a bite from an infected tick, when it carries the germs involved. This disease is manifested by a wide range of symptoms from one person to another, this is why it is also called  the  new "great imitator".

Initially, Borrelia Burgdorferi stricto sensu is the bacteria responsible for Lyme disease, discovered in the United States in the 1980s. Borrelia bacteria belongs to the spirochetes class, which makes Lyme disease, a kind of "cousin "of syphilis.

However, out of the 300  borrelia species  recorded today, around 20 species are recognized as pathogenic for humans (Lecompte et al., 2003). Borrelia burgdorferi lato sensu designates thus a complex of pathogenic species, of which the prevalence varies from one continent to another. New pathogenic species are still being discovered, such as Borrelia mayonii in 2016 (BS Britt et al., 2016).

Ticks can also transmit a wide range of other infectious agents: others bacteria (bartonella, ehrlichia ...), parasites (babesia ...) or even viruses (Moutailler et al., 2016).

Thus the term "Lyme disease" makes it difficult to account for the complexity of those infections : it's gonna be preferable talking about "Ticks born diseases".

Why does this illness  pose a  problem ?

  
It is currently the most common zoonosis in Europe. While in France, the number of new cases per year of Lyme diseases today exceeds that of HIV carriers and breast cancer combined, no budget has yet been released to fund studies on the diagnosis or treatments.

As a result, the diagnosis and care modalities  remain subject to a global scientific controversy that originated in the United States almost thirty years ago.

The French medical community recently raised a form of "drift" associated with the recent media coverage of the disease (see "Bulletin de veille sanitaire - N ° 2 / June 2018").

However, on November 15th 2018, the European Parliament indicated about the real epidemic scale and its catastrophic consequences for patients not or poorly treated : the European Parliament "expresses its concern about the alarming extent of the spread in the European population of Lyme disease, which affects about one million citizens" (see Resolution 11/15/2018).

Is it a looming health scandal ?

The World Health Organization recognized this summer, following the update of the CIM codes, many life-threatening complications previously not mentioned in these codes, such as the congenital infection.

In France, patients have seized justice and have gathered in  collectives. Unprecedented situation where patients face a dogmatic scientific position, which rejects the advances of the international research. The chronic form existence of the disease and the usefulness of the complex and prolonged treatments are thus still strongly disputed.

Why such a resistance?

It was  emergency to understand why there is still such a strong resistance, because the sum of the current scientific data does not leave room for doubt.

This resistance led me to embark on to this documentary film project. 

To clarify the situation, a scientific inquiry had to be carried out.

 Welcome to  the heart of the scientific controversy 

So  "Who to believe?"

When medicine, pushed into its entrenchments, must first believe in patient's words.   

What is the purpose of the film?

If the movie could have an impact, namely as a mediation tool, by facilitating access to a quality information and by helping to change the current situation, then the goal would be fully achieved.

The objective will be to give the possibility to everyone to make up their  own opinion, given through an exposure to the facts and the latest scientific data, to help restoring a real dialogue in the future on this basis. It is by defusing the situation that a global change can happen.

The participants / Developed axes

1) The research first actors

After a call following precise criteria, I was able to gather more than 300 answers, revealing the expectation for a documentary film to be made today, in order to raise public powers awareness to this cause, and that, in many part of the world.

The witnesses chosen across France will embody situations that are unfortunately too frequent, experienced as a rejection from the Medical Corps. An analysis of the situation will be exposed by some intellectuals.

-"Survivors" who, following a diagnosis of a "proven" Lyme in a chronic form (on biological criteria) have benefited from prolonged and complex treatments will also  be presented.

2) The scientists

The scientists participation will be crucial, they will be the film pillars, on which the narrative will be based :

* Infectious disease physicians, specialists in infectious and tropical diseases, will be present, and among others:

- Pr Christian Perronne, Head of the Infectious and Tropical Diseases Department, CHU Garches, vice-president of the FFMVT, former president of several medical and scientific institutions, vice-president of WHO experts group on vaccinations, member of the ad hoc committee for the revision of the CIM codes at WHO.

- Pr Pierre Tattevin, Head of the Infectious and Tropical Diseases Department, CHU Rennes, SPILF President, Member of the High Council for Public Health, President of the Study Group and Research in Infectiology Center West (GERICCO ).

I thank them very much for their participation in the film.

Will also be present:

- Biologists specialising in microbiology, genetics and Immunology

-Medical biologists for diagnosis questions

-General practitioners and interns in general medicine

-Veterinarians that will bring their own expertise of this zoonosis.

3) Antibiotics are not automatic

Medicine is about to undergo an unprecedented crisis : the emergence of multidrug-resistant bacteria. Hence developping research and find reliable alternatives is a real emergency. I would like to give more visibility to the scientific work carried out on this subject (phagotherapy, aromatherapy, plants based-on research  ...).

Also meeting with rare herbalists : when harbal medicine becomes a valuable ally for the patient : a badly denigrated medicine.

4) When scientific resistance encroaches on human rights

Meeting with Jenna Luché Thayer, former senior advisor to the United Nations and the U.S. government, chair of the Study Committee for the revision of the Lyme borreliosis codes at WHO.

She gave me the honour of her participation in the movie. Her expertise for more than 30 years in the field of human rights will allow us to better understand why this situation has led to multiple violations of the person : 

"People are denied treatment options that meet internationally validated standards and become disabled and dying because access to cheap generic antimicrobials is impeded in favor of costly patented hospice or patented biologics that manage the symptoms and leave untreated systemic infections. "
 

(Jenna Luché Thayer from the WHO press release 18/06/2018)

About the project leader:

As a self-taught filmmaker, "Did you say Lyme?" will be my first documentary.

I hold a Master 2 Research in Genetics and Physiology. My studies gave me the necessary knowledge and the desire to deal with such a controversial subject as the "case" of Lyme disease.

On the other hand, the circumstances of life have made me particularly interested in the subject and so I felted very concerned by this issue. I also have a BA in Archeology and Art History, so I am from a background whose richness is for me fundamental, and allows me to affirm my artistic choice in the realization of this film.

My studies in Art History have helped sharpen my artistic sense, and my ever-present interest in documentary  has allowed me to consider moving to filmmaking.