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Something is shifting in Europe. Slowly, painfully, against resistance and fear, but it is shifting nonetheless. When one reads how TIME magazine has dedicated space, time, and respect to people who have lived for decades in pain, darkness, and physical decay, when one sees tens of millions being allocated for research, when countries like France acknowledge for the first time that there is a problem and that it can no longer be swept under the rug of convenient denial, the contrast begins to hurt almost physically. Because while elsewhere patients are finally being given a voice, names, and faces, here, people continue to disappear in silence, fall ill without diagnosis, become disabled without explanation, lose their professions, families, and dignity, without this provoking anything more than a weary shrug of the shoulders.
In the news below, there are stories that are not sensationalism, but human lives, disintegrating in real time, much like those of us here. People who have been called fakers, hypochondriacs, mentally unstable, while the bacteria slowly turned their nervous system into a battlefield. And yet, somewhere, someone has finally decided that this is not normal, that it is not acceptable, that it is not permissible for a society to leave its sick to fend for themselves against a system that refuses to see them.
In the United States, research is being funded. In France, funds are being allocated, programs are being created, and it is being acknowledged that Long Lyme exists, that there are persistent forms, people who do not fit into convenient diagnoses. Here, we continue to live in a state of collective complacency, as if our bodies were foreign territory, as if illness were a personal moral failing and not a societal issue.
The common European person is accustomed to gritting their teeth, to enduring, to remaining silent, to saying "it will pass," while in fact nothing passes, it only accumulates. And it is precisely this silence, this apathy, this resignation that becomes the soil upon which silent epidemics thrive without resistance, because there is no more convenient patient than the one who does not ask questions, does not demand answers, and expects nothing from their state.
While elsewhere patient organizations fight, pressure, write, sue, and go to the media, here the sick are often deliberately left to manage on their own with doctors who do not want to know, institutions that do not want to hear, and a society that prefers to believe this does not concern them, because for now, it is not them. And they do not manage; they are, as if, surprised.
There is something deeply tragic in watching Europe begin to acknowledge that an illness can ruin a life without killing you, as it begins to speak of disablement, of chronic pain, of lost years, while we here continue to behave as if, by not looking the problem in the eye, it will evaporate on its own. It does not evaporate. It accumulates in thousands of bodies, in thousands of fates, in thousands of people who were once active, working, dreaming, and who today count their days between the bed and the pain, without perspective and without hope.
This is not a text about Borrelia; this is a text about the way a society decides whether the lives of its people matter when they do not bring ratings, when they are not loud, when they do not die quickly and photogenically. Europe is beginning to wake up to this reality, with all its delays and mistakes, while we continue to sleep, complacently, comfortably, with that fatal confidence that this will not reach us, until it is too late. But there are already many disabled people here. And they will not become fewer. And your children will one day hold you responsible.
And if one day we wonder why we are sick, why we are exhausted, why we are desperate, and why no one hears us, the answer will not be only in the institutions or the doctors, but also in our own long-standing silent agreement to rot slowly, instead of screaming out in time that we want life, not mere survival, and that our bodies are not a bargaining chip to be sacrificed in the name of convenience, fear, and indifference.
Here is the translation of the publication from the website of the French organization France Lyme, and dream of a better life, but in the next one:
Dear friend, dear members, dear supporter,
International News
'Long dismissed, chronic Lyme disease finally receives its recognition'
This is the hopeful headline of a very good dossier published by the American magazine TIME on May 16.
It is a comprehensive and exemplary piece of journalism: convincing, rich with references to high-quality content, alternating heartbreaking patient testimonies with news from the front lines of scientific research.
Among the testimonies is the story of Sue Gray, 59 years old, ill for 29 years, who was misdiagnosed for a long time with multiple sclerosis and only received a late diagnosis of Lyme disease at the age of 49, after 20 years of wandering and a true hell. Also featured is the story of Cody Moore's family, a 30-year-old who has been ill since childhood and lives in great despair with his wife and their five children, all affected by Lyme disease. These are harrowing testimonies, like those we receive daily at France Lyme.
The publication of such stories in a major national media outlet is something we dream of, because it is precisely what is needed to raise public awareness and convince health and political leaders to take action.
Scientific Aspect
The dossier reminds us, among other things, that 14% of diagnosed and treated patients develop a chronic form of the disease, and to this number must be added all the patients like Sue Gray who were not diagnosed and treated in the early stage.
Serological tests for Lyme disease are also discussed, which suffer from a lack of reliability and lead to a significant number of 'false negative' results.
The article highlights the fact that many patients experience symptoms outside the official list characterizing PTLDS (Post-Treatment Lyme Disease Syndrome), namely fatigue, pain, and cognitive impairment. This further complicates diagnosis and creates difficulties for doctors...
Major Research Projects in the USA
The dossier lists the leading current research on Lyme disease in the United States, including:
The promising research of Michal Tal, an immunology engineer who, with her team at MIT, is studying how to distinguish an active infection from a past one using immunological markers, and why some people develop a chronic form while others do not.
The preliminary tests of Professor Kim Lewis and his laboratory at Northeastern University in Boston on a natural antibiotic derived from soil fungi: Hygromycin A, which shows very encouraging results in vitro and in animals.
Research at several universities, including Stanford, to systematically test existing drugs against Borrelia, which, if successful, would save significant time for regulatory approvals.
The work of Dr. John Aucott, director of the Lyme disease laboratory at the Johns Hopkins Research Center, to develop reliable diagnostic tests and effective treatments with new molecules.
The progress of Professor Timothy Haystead from Duke University in North Carolina on molecules that simultaneously detect and destroy Borrelia, sparing other cells and causing no adverse reactions.
The tests by the team at the University of Massachusetts with well-known anticancer drugs, following successful initial laboratory phases.
It is clearly visible that in the United States, things are moving forward: many researchers are mobilized and have the resources allowing them to make progress. This is extremely hopeful for the future.
From a communication standpoint, publishing such a dossier in a media outlet with a large audience is an excellent move: personal testimonies that inform and impact the general public, and specific information on current research. When will major French media publish a serious and in-depth piece on Lyme disease?
As you know, it is difficult for us to be heard in the media. COVID took center stage in health news in recent years, and since the end of the pandemic, the news flow has been literally flooded with urgent events. Nevertheless, we are not giving up and continue to seek ways to engage the media. If you have contacts in the media or journalism world, we would be happy to hear from you!
National News
And in France, the research program for Lyme disease and TBDs (Tick-Borne Diseases) is gaining momentum!
You probably remember the news from the beginning of the year: our efforts to convince the institutions to invest in scientific research paid off. For the first time in our country, 10 million euros were allocated for research into Lyme disease and TBDs for this year.
Where are we now? A steering group was established under the auspices of INSERM (the French National Institute of Health and Medical Research), in which I participate as a patient representative on behalf of France Lyme. I had the opportunity to present the priorities of the sick, with a particular focus on the diagnosis and treatment of so-called 'long Lyme' – a term encompassing persistent forms of the disease (chronic, post-infectious, etc.).
Some of our proposals were not accepted immediately, but a significant part of them were included in the program's objectives. And we did not expect all topics to be covered in this first funding round: scientific research requires a multi-year approach and a long-term vision.
The program for the first phase in 2024 is being finalized: its main lines are already defined, and the specific projects are to be detailed and launched as soon as possible.
Like all members of the group, I am bound by confidentiality. I would like to tell you more, but for now, this is not possible. It is important to know, however, that things are moving: for the first time in France, serious scientific research will be conducted on our disease. Finally. I will inform you as soon as it becomes possible.
Doctors Again Under Fire from the Medical Council
Regarding the doctors who treat patients with Lyme disease and TBDs, the news is again alarming. The Board of Directors of France Lyme decided to publish an official statement in protest against the threats to revoke the practice rights of several of them.
Patients of Dr. Bransten have launched a petition and a donation campaign in his support.