Point de presse et dépôt de pétition sur la maladie de Lyme à l’Assemblée nationale

*Repost from the Association québécoise de la maladie de Lyme’s website, aqml.ca.*

Hier a été une grande journée pour la cause de la maladie de Lyme à l’Assemblée nationale du Québec, où l’Association québécoise de la maladie de Lyme, plusieurs de ses membres ainsi que des personnes touchées par la maladie ont tenu un point de presse avec les députés péquistes Sylvain Pagé et Sylvain Roy. Tout juste après notre sortie publique, les ministres CharleboisBarrette et Blanchette ont été interpellés par les journalistes de l’Assemblée et ont tenus leur propre point de presse, chose assez inhabituelle qui indique que nous avons eu un impact. Ils ont choisit de simplement réitérer la position dogmatique adoptée depuis des années par les autorités médicales qui perpétue la non-reconnaissance adéquate de la maladie. La pétition a ensuite été déposée par monsieur Sylvain Pagé, député de Labelle, qui porte son appui à nos revendications. Nous tenons à remercier de tout coeur les députés qui nous soutiennent, les personnes atteintes qui se sont déplacées pour le point de presse, ceux qui ont fait des présentations et des entrevues par la suite, et tous ceux qui nous soutenaient de près et de loin!

Nous prenons un moment pour nous reposer et vous donnerons des nouvelles sous peu.

Voici quelques liens qui présentent les évèvements médiatiques de la journée.

Assemblée nationale du Québec : Point de presse de l’AQML et autres acteurs sur le maladie de Lyme à l’Assemblée
Assemblée nationale du Québec : Point de presse qui a suivi immédiatement après des ministres Charlebois, Barrette et Blanchette

REVUE DE PRESSE

Articles

La Presse : Maladie de Lyme: «L’État ne peut pas nous laisser de même!»
Journal de Québec : Maladie de Lyme: des patients reprochent au réseau québécois son inefficacité
Le Soleil : Maladie de Lyme: attention aux charlatans, avertit Barrette
TVA Nouvelles : Des patients accusent le réseau québécois d’être inefficace
TVA Nouvelles : Rémy Fortin veut que la maladie de Lyme soit reconnue
L’Écho de La Tuque : Maladie de Lyme: dépôt d’une pétition de 9000 noms
Le Nouvelliste : «Il nie complètement le problème»
Le Soleil de Chateauguay : Maladie de Lyme : un grand malade de Beauharnois à l’Assemblée nationale de Québec

Entrevue à la télévision

TVA LCN, Mario Dumont : Des patients accusent le réseau québécois d’être inefficace

Entrevues à la radio

98,5 fm Montréal, Isabelle : Craignez-vous la maladie de Lyme?
blvd 102.1, 100% Normandeau : Entrevue avec George Kassatly, père d’une jeune fille qui a contracté la maladie de Lyme
Radio-Canada Estrie, Écoutez l’Estrie : Une pétition pour un plan d’action contre la maladie de Lyme
Radio-Canada, ICI première : Une pétition pour contrer la maladie de Lyme
Énergie 98.9: La maladie de Lyme, la maladie qui ¨n’existe pas¨ au Québec

Communiqué de presse de l’AQML pour annoncer le dépôt de la pétition :
Advertisements

Silent but not dormant

peru-hamac
Pondering life and all its beauty on a recent enriching and uplifting trip to Peru.

I’ve been a little silent here for a while.

The truth is, I’ve had increasingly less to share about my personal journey with Lyme disease specifically, and have been really busy working on my physical, psychological, emotional and spiritual health. When I feel called to share more on my whole healing journey, I will certainly do it; for now, however, I am very busy going inward and working out all the things. There is still much to do, many symptoms to work out, but I am happier, more present and more connected than ever before in my life.

At the same time, I was asked to step into the position of president of the Quebec Lyme Disease Association (AQML) in mid-2017 and have put my advocacy work to use in that context. Our current major action is a political one, namely we have an official petition at the National Assembly of Quebec which will be deposited in 2 weeks (the translated petition text and instructions can be found here). There are more and more impactful stories out in the media about those afflicted with Lyme disease, more backing from various spheres of society and political support is certainly growing. It feels like things are shifting and that soon, the medical authorities will no longer be able to sit back and deny the issues we face while pointing their fingers at us for being anti-science (speaking of science, have you seen this latest research: Lyme bacteria survive 28-day course of antibiotics months after infection)?

With love,

Marge ❤

Help us protest the inadequate draft federal framework!

Supporters and friends! I need your assistance. Elizabeth May, the Green party leader and great champion of the fight for adequate Lyme disease recognition in Canada, has created an official e-petition that can be defended in parliament following the very disappointing draft federal framework published earlier in February. The petition on change.org that is going around gathered almost 35 000 signatures, which is amazing, but it was not “official”. This is where it really counts!

I just ended a conference call with high ranking Public Health Agency of Canada officials and medical representatives and it is abundantly clear that they are not acting in the patients’ and public’s best interest. Please stand with me for justice and humane treatment for all: sign, share share share, and give Lyme patients a voice.

The official parliamentary petition: https://petitions.parl.gc.ca/en/Petition/Sign/e-903

La pétition en français : https://petitions.parl.gc.ca/fr/Petition/Sign/e-903

On a personal note… believe me when I say that I wish I didn’t have to be a Lyme activist. I wish I could move on from this cause, focus on my healing entirely and be a positive creative force in the world outside of the fight for recognition of Lyme disease. But the truth is, there is so much work left to do and we face roadblocks at every step. This infectious illness, the opportunistic infections that often accompany it and the plethora of health issues that are brought on by its destruction of a person’s immunity (and its action on all bodily systems) can have an absolutely devastating effect on those who are afflicted by it, especially if it is not caught and treated early. Don’t think “big flu” so much, think syphilis, AIDS, illnesses like MS and ALS. Thousands of Canadians are suffering from its consequences, without proper recognition of their health statuses, with loss of income and no access to financial aid, paying tens of thousands of dollars to try to regain their health, and with no real help and often contempt from the medical community. This is my situation and I do not wish it upon anyone. And I am one of the lucky ones: I have a loving and supportive spouse, a fighting spirit, a resilient mind and body (despite it all), and I firmly refuse to internalize the shame and stigma thrown at me from numerous sources. Living with this unrecognized illness and its consequences in Canada is nothing short of hell for so many. Just a few days ago we learned of a member of the Lyme community in Quebec taking his life: http://www.tvanouvelles.ca/2017/02/26/maladie-de-lyme–encore-plus-de-regions-touchees (in French).

Please help make us heard! Much love and health to you all. ❤

“Lyme : quand la maladie nous mord”, a Lyme disease documentary

In the first half of 2016, director Charles Domingue and I conducted many interviews with those afflicted by Lyme disease in Quebec, some of the doctors who treat them, scientists, as well as the very doctors who claim to be unaware of the inadequate treatment of the illness in Canada, and who deny the gravity of the more advanced forms of the disease and their devastating effects on the body. The following documentary is the result of our work (available only in French at the moment).

La Maladie de Lyme: un calvaire pour ceux qui en souffrent

L’extrait de l’émission du 98.5 FM de ce matin, à l’émission Isabelle animée par Marie-Claude Lavallée, traitant de la maladie de Lyme au Québec est en ligne ici. Nous n’avons pas pu tout dire, bien sûr, mais nous avons pu faire valoir certains points importants.

On augmente, espérons le, les cotes d’écoute pour le documentaire de ce soir 20 h à Canal Vie, qui ne va pas décevoir!

ps. Et j’ai aussi passé une entrevue à CKOI plus tard où on a pu en dire plus.

La Presse+, 3 juillet 2016 : La guerre des tiques

“La maladie de Lyme gagne du terrain au Québec. Et avec les tiques qui la transmettent débarque une intense controverse sur la façon de la diagnostiquer et de la traiter. Patients qui se disent abandonnés, médecins qui crient à l’antiscience, chercheurs dissidents qui se rangent du côté des malades : le point sur cette guerre des tiques qui divise.

diagnocontro
Juillet 2016

UN DOSSIER DE PHILIPPE MERCURE”
– tiré de La guerre des tiques, dossier en 3 sections dans La Presse+, édition du dimanche 3 juillet 2016 (Google translation: Tick wars) :

  1. Des diagnostiques controversés
    (Google translation: Controversial diagnoses)
  2. Le débat en trois points
    (Google translation: The debate in three points)
  3. Que faire contre la maladie
    (Google translation: How to stay protected from the illness)

Le nouveau bastion de l’antiscience (Google translation: The new bastion of antiscience), article d’opinion publié le 20 mai 2016 dans La Presse+, écrit par 4 médecins québecois, qui a suscité l’intérêt du journaliste par rapport à la controverse et dont il est question dans le dossier (, crisse).  😉

marge-2014
Mai 2014 (photo tirée du dossier La Presse+)

Ajout: La réponse du père d’une personne atteinte par la maladie, Claude Martin, dans la section débats de La Presse du 10 juillet: L’incroyable incurie du monde médical (Google translation: The incredible negligence of the medical world). “Traiter les autres comme ils le font d’« antiscientifiques » est proprement révoltant. Est-ce que le déni constant constitue la véritable « science » de la communauté médicale du Québec ? Cette communauté fait-elle de la recherche dans ce domaine ? Où est donc votre « science » et comment fonctionne-t-elle ?” – Claude Martin

The Montreal Gazette, May 23, 2016: Lyme disease: Conference aims to establish federal framework

montreal-que-may-18-2016-lyme-disease-activist-margue2Lyme disease: Conference aims to establish federal framework

“Montrealer Marguerite Glazer was one of those who spoke, describing her 15-year battle with Lyme disease, which began when she was 19. She says there are 400 Quebecers in her Facebook group who all believe they have Lyme disease and tell of being “ridiculed and insulted” by doctors here.

“The present medical system in Canada is relying on outdated and flawed information, masqueraded as science, causing thousands undue suffering,” said Glazer, vice-president of the Quebec association for Lyme disease. She “felt toxic” for 12 years before her diagnosis and treatment for Lyme disease, she said.

Glazer couldn’t hold down a job and could barely get out of the house when she started a six-month therapy of antibiotics three years ago, which she says gave her her life back. Many sufferers say they have symptoms mimicking arthritis, MS or other chronic conditions.

The present medical system in Canada is relying on outdated and flawed information, masqueraded as science, causing thousands undue suffering.”

My Canadian Lyme disease conference public forum testimonial

meatconfMy name is Marguerite Glazer, I’m from Montreal and I am a Lyme survivor. My health nightmare began 15 years ago, when I was 19 years old. Suddenly, I started feeling sick every single day.

I remember at first naïvely thinking: I’ll go to the doctor and the doctor will help get me well. But in the span of 12 years I saw over 30 doctors, generalists and specialists of all sorts, who all very quickly dismissed me with completely bogus diagnoses. Slowly but surely my symptoms worsened, they multiplied, affecting my entire body, making me increasingly incapacitated: unable to work, get out of the house much, take care of my basic needs. Extremely ill and repeatedly told there was nothing actually wrong with me, I considered suicide on numerous occasions. It felt like I was dying on the inside, and I had nowhere to turn.

After years of pain, exhaustion and relentless research, I finally did proper testing 2 years ago and was diagnosed with Lyme disease. For the record, I tested unequivocally CDC positive. With a mix of long-term antibiotics and other complementary methods, I gained my life back within a year and felt better than in my entire adult life.

After being diagnosed with Lyme disease I became involved in the Lyme community in Quebec, only to realize the extent of this devastating systemic issue. Je représente aujourd’hui tous les Québecois au prise avec cette maladie qui les empêche de vivre et pour laquelle ils n’ont aucune aide dans la province: déni de l’ampleur du problème, pas de soutien médical, pas d’aide financière ou gouvernementale, et une santé qui dégringole… c’est l’abandon total. On parle de centaines ou même de milliers de vies affectées et le nombre de cas d’infections augmente à un rythme faramineux. La situation est abbérante, ne fait qu’empirer, le problème est endémique et les patients ont depuis longtemps compris que ce n’est pas chez leurs médecins qu’ils vont trouver de l’aide.

Lyme disease sufferers desperately want to get to the root cause of their issues. Sadly, we are faced with MDs who show great contempt towards chronically ill patients, showing savage disregard for our suffering. We are told to stop looking into potential solutions and just accept that our problems are not real, that they are psychosomatic, of unknown origin, they label us with numerous misdiagnoses and of course push for us to take inappropriate medication. Patients are ridiculed and insulted. They are called attention-seeking hypochondriacs. They are told they have OCD because they focus so much on their health and symptoms. They are told that depression causes their seizures, that their anxiety causes their vision problems and that overall, they are just lazy people who don’t want to deal with life.

It is staggering how often we hear this nonsense being told to patients. On what evidence are these doctors basing their diagnoses? In a world of evidence-based medicine, it appears that doctors, and specifically infectious disease doctors, are often relying on their own magical thinking when it comes to Lyme patients. They freely throw around terms like placebo and psychosomatic, unwilling or maybe simply unable to do their actual job properly.

We are taken for fools, seen as gullible people drawn to a quacky diagnosis of chronic Lyme disease that we stumbled upon on the Internet. I have spoken to hundreds of Lyme patients and let me be clear: nobody, absolutely nobody wants to be part of this club. We fight strong and stick together because we have to, for survival. When the medical system is against you then much of society follows, and the isolation of the Lyme predicament is truly a gut wrenching and horribly difficult human experience. We fight because we don’t want anyone else to go through what we’ve been through. We fight so that people know about Lyme disease and other root causes of illness, and so they know how widespread it is. We fight so that others know that it can get better, that with the right help they can recover, that there is hope in hell. 

Medical arrogance, a profound disconnect from the reality of chronic illness and over-reliance on outdated and flawed science and testing… those are the real diseases du jour.

Most doctors would rather believe that thousands are having the same mental and physical delusions than to question the mantras they have been taught to repeat. The rare compassionate doctors who are up to date with their scientific knowledge and who truly care about helping their patients heal are prosecuted by the medical police. It seems that we’ve gotten seriously off track when it comes to our idea of health care.

Let’s not forget that the primary goal of medicine is to make people well. We should all be concerned first and foremost by the reality of the Canadian Lyme disease patients. The present medical system in Canada is relying on outdated and flawed information, masqueraded as science, causing thousands undue suffering. We need to do better because the current standards are failing us miserably. And we need to do it now.

Lyme patients and their expert doctors have so much to teach: it’s up to everyone to listen. Being sick is not a crime, I hope this conference helps put a stop to the war that is being waged on Lyme disease patients.

Episode 62: Yes, there is healing


ps. I may need to review my definitions of sympathy and empathy, as looking into them now I realize what I said in the video doesn’t make perfect sense. The issue was this: I had to learn to be empathetic with my Lyme friends and be able to listen to them and truly care about what they are going through and try to help as I can, but all this without having it destroy me mentally and without identifying too much with their pain, simply because I know that pain too well and it could kill me if I let it. And because I don’t think it’s fair that I feel better and they don’t all. I created separate buckets in my mind, a bucket for my experience and my pain, one for my Lyme friends, one for how messed up the medical world is, etc., and I work daily at not mixing up all the buckets, as it could come at a great cost for my mental health. Voilà.