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 Charlebois, Barrette 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 :

Maladie de Lyme: Plus de 9 000 personnes réclament au gouvernement du Québec l’instauration et l’application d’un plan d’action relatif à la maladie de Lyme.

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Silent but not dormant

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. ❤

Episode 66: The healing nomad

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.

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 diagnostics 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).  😉

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

Episode 65: Lyme healing is tricky business

My Canadian Lyme disease conference public forum testimonial

My 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 64: Busy spreading the good Lyme word

Note: the Canadian conference to develop a framework for Lyme disease will be held on May 15-17, 2016, in Ottawa. The planning committee is composed of many stakeholder groups including representatives from the Public Health Agency of Canada, medical associations and patient groups.

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.

Lyme disease infographic

Lyme disease infographic by Daniel Cameron, M.D. & Associates

Unscientific persistent Lyme disease denialism, right here in Montréal

Following the terribly inaccurate opinion piece written about Lyme disease last weekend in the Montreal Gazette (on which I commented harshly), Jim Wilson of CanLyme wrote a rebuttal piece and asked for it to be printed. This is the response he got from The Gazette:

“(…) We do not plan to publish your oped piece.

While we strive for balance on our oped page on most issues, this is not
true concerning issues where the weight of scientific opinion is strongly
on one side. (…)”

It turns out the editorial page editor is sadly one who mistakes “scientific opinion” with “outdated totally unscientific (so pseudoscientific?) ramblings served to you by a shill with a medical degree”. This is exactly what is so dangerous about this situation: attention-seeking MDs come out and say outrageous false things and yet many see them as the side of “science”, and patients say the real things but are seen as nothing but “anecdotes” and our personal experience and knowledge isn’t valued at a penny (and you know, we’re all just unaware mysteriously sick people placebo-ing the hell out of our lives and stuff…). The facts are that patients have actually researched and read all the recent and relevant science (we want to get well!), we’ve shared our experience with dozens if not hundreds of other patients, those in the Lyme community agree on most points and we know far more on the matter than most conventional doctors, who have been programmed to just repeat the official medical lines and pass them off as their own educated opinion in such circumstances.

This is the world we live in, the fight and the struggle are very real…

Here is Jim Wilson’s excellent text, it’s worth a read.

Regarding the July 11^th issue of the Montreal Gazette titled, “Lyme disease is very real, but it’s no epidemic” by Dr. Christopher Labos.  Some of the content is troubling and may cause your readers to lower their guard.

There is no evidence that 2 to 4 weeks of antibiotics is a cure for Lyme disease as indicated. In fact, several animal model studies support the opposite.  Lyme disease can persist as an active infection, even beyond 3 months of antibiotics.

The term Post Lyme Disease Syndrome is only a hypothesis. Why?  No one to date has been able to establish when it becomes “Post” Lyme Disease.

Dr. Labos indicates that because the infection cannot be found in the blood, it somehow indicates a lack of infection. In reality, it has been known for years that the organism disseminates quickly and easily out of the blood into other tissue.

Lyme Disease bacteria are showing up in the brain tissue of dementia patients in significant percentages along with other spirochaetal bacteria.  Lyme Disease is a spiral shaped bacteria called Borrelia, a spirochaete, and is a cousin of syphilis.  Lyme Disease is a borreliosis, caused by many genotypes of the bacteria, not only that which the too narrow Canadian tests detect.

Older clinical trials, which were referred to in Dr. Labos’ article, have long since been debated and shown to have serious design and methodology problems.  They should not be used to support any health care policy as they do not meet the quality requirements for strength of evidence. 

In testimony to federal government committees last year, Public Health Agency of Canada executives acknowledged that cases were seriously “under-diagnosed” in Canada, not “over-diagnosed” as Dr. Labos stated. Those senior executives are on record stating the 682 cases that were confirmed in 2013 are likely under-reported three fold, and that in 4.5 years from now we will have between 10 and 20 thousand cases per year. The United States, in 2013, upped their estimate from 30,000 to 300,000 cases per year, mostly in states that border Canada. Lyme Disease is pandemic and Canadians must arm themselves with knowledge of prevention.

Our ticks in Canada, especially in Quebec, come in on migratory birds such as your friendly robins, wrens finches, and sparrows in the tens of millions per season from the very highly endemic states below us.  Ticks carrying Lyme Disease are becoming established in regions throughout Canada randomly.

Tens of thousands of people have benefited from longer-term antibiotics.  Simply because mainstream medicine to date has refused to fund transparent clinical trials in collaboration with patient’s medical experts, it does not mean those tens of thousands of people’s stories are simply anecdotal. A few hundred people with a similar story could be anecdotal, tens of thousands of people are no longer anecdotal and aggressive study is required.  Taxpayers deserve better in Canada on the Lyme Disease research file.

The Canadian Lyme Disease Foundation through its Venture Grants program is funding research in Canada.  We are working in conjunction with the G. Magnotta Foundation for Vector Borne Diseases to establish a research program using today’s most sophisticated science and technology to study human tissue to identify Lyme Disease and other diseases in all forms of human tissue.

Knowledge leads to prevention, and we all have the right to make ‘informed consent’ decisions with our doctor derived from accurate information. A negative Canadian test for Lyme absolutely cannot confirm you do not have Lyme Disease and you may not be cured with 4 weeks of antibiotics. Lyme Disease remains a clinical diagnosis based upon symptoms and history.”

98,5 FM Radio Interview with Isabelle Maréchal (in French)

A few weeks ago, on July 3, 2015, I was invited to participate in a 30-minute radio interview with host Isabelle Maréchal on a province-wide radio program to talk about Lyme disease. The show also invited two other lymies (my friends) and gave us ample space to discuss the issue as we know it to be. We were thrilled at the quality of the work done by the interviewer and her willingness to get to the heart of things. We spoke of unreliability of tests, the need to test in the USA, the need for long-term treatment, the extent to which this illness is debilitating, the presence of coinfections, the difficulty of dealing with closed-minded doctors, etc. The main question/angle they tried to take was: More and more people from Quebec are getting sick from a tick bite and develop Lyme disease, why are they left to fend for themselves?

The full radio interview is here (in French): Des Québécois ont été contaminés par une tique et ont contracté la maladie de Lyme. Le nombre de cas augmente. Pourquoi sont-ils laissés à eux-mêmes?

CBC News Montreal – Lyme disease – 2015-06-16

 

Episode 61: How I became Lyme free