TOUCHED BY LYME: A hunger strike for “le droit de guerir”—the right to be cured

Matthis Lacoste is a 33-year-old Frenchman whose chronic Lyme disease has made it impossible for him to work. Recently, his disability payments were stopped and he was told to return to work.

In response to what he considers to be his government’s callous disregard for the lives of people with chronic Lyme disease, Lacoste has embarked on a hunger strike.

“My claim is simple,” he says. “I demand the right to be cured.”

French Lyme patients have longed complained that their health system takes its cues from the Infectious Disease Society of America’s Lyme disease guidelines, which make it difficult for many who suffer from the illness to even get diagnosed with Lyme, let alone treated.

In a series of Facebook postings and YouTube videos, Lacoste lays out his situation and asks people to share his message.

Most of the postings are in French. However, one of them includes English sub-titles, which I have transcribed here. If you want to look at some of his articles posted on Facebook, you might use Google Translate to the get the gist of what he’s saying.

Hello, everyone.

I’ve hesitated a lot to tell you the following. It’s something I’ve been thinking about for a very long time. But I think I made the right choice, because tomorrow I won’t be able to support my family.

My name is Matthis Lacoste. I’m 33. I am the father of two children, aged 4 years and 20 months old and I live in Ardèche, France.

I am suffering from Lyme disease, which in my case has become chronic. And because medical authorities are lying to us all!

This epidemic began more than 30 years and today our health system puts our lives in danger.

The Germans announce 1.5 million people infected with Lyme disease and in the US there are 300,000 new cases of Lyme per year.

However, here in France THEY WANT US TO BELIEVE that there are only 27,000 and that it can be easily cured. It’s so wrong!

You should realize that today the health protocols imposed in France are outdated because they are based on a 2008 directive published by renowned American experts but subject to conflict of interest.

That screening tests are not reliable because they were calibrated on healthy people to ensure that not more than 5% of the population is diagnosed as infected.

A wrong diagnosis or an unnoticed tick bite, and it’s a medical wasteland for many years.

Access to care is increasingly complicated for patients who like me understand what they are really suffering from.

Recently, the medical office whose aim is to send me back to work no matter what, told me that he is stopping my daily allowance.

It will therefore be difficult for me to care for myself and look after my family.

That’s why I have decided I will stop feeding myself and I will suspend all treatment from the 18th of June 2016 onwards. I am determined.

My claim is simple. I demand the right to be cured.

I invite you to meet me every morning, live from the Facebook page LE DROIT DE GUERIR.

Thank you for listening and thank you with all my heart for sharing this video.

We have the right to be healed and they have the duty to protect us.

Le Droit de Guerir Facebook page and YouTube channel.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.

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