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.
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You should realize that today the health protocols imposed in France are outdated because they are based on a 2008 directive published by renowned American experts but subject to conflict of interest.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 firstname.lastname@example.org.
- June 21, 2016 at 3:53 pm
hard to believe that other governments choose to appear to be just ignorant as ours when it come to tick born disease … I suggest this young man point out that the IDSA guidelines have been removed from the NGC for lack of credible research that supports the 2006 guidelines they had posted … the idea of ignoring that fact and continuing to flog their ridiculous rules as if 10 years had not brought about any new information , makes me sick … like many of us survival has included moving into inexpensive housing, getting rid of our cars and insurance, and visiting the food pantries … just surviving until we can be well again
- June 22, 2016 at 11:11 am
Suzanne….So true! Survivalist mentality.
- June 22, 2016 at 7:53 am
Wow – I hope he gets the attention he’s asking for!! Hope to see a better outcome for him as a result of the hunger strike! Like start to accomplish some reforms in France!
Here in the US, the situation is astoundingly unjust as well – perhaps an article on the injustices of the various disability systems?
For example, anyone on SSI (supplemental security income for disabled) in the US is being expected to live on amounts last set in 1972 and 1989, and that doesn’t work in the current time!
Specifically, unearned income of $20/month and earned income of $65/month are allowed, which totals only $85/month, then the system subtracts medical expenses needing for working, then wants one for two dollars earned back. That’s too much back from too low a threshold amount.
Looking at context of the rules in 1972, the minimum wage in 1972 was $1.60. Thus the $20 unearned/month was 12x the mw and the $65 earned/month was 40x the mw. That should be a starting point, at the very least, for today’s calculation, and that really isn’t enough either for disabled people on SSI to make it. Probably should be 2-3x higher ratio.
The 1989 part has to do with allowable resources – 1989 was the last year it was changed. That’s 27 years ago. For an individual, it’s $2,000, and for a couple, $3.000. The minimum wage was $3.35 then, making the 2K 600x the mw and the 3K 900x the mw wage. There’s a ratio that could be used.
And it was an even greater ratio in 1972 – 1500 for an individual and 2400 for a couple, making that 900x the mw for an individual and 1500x for a couple.
Disabled people on SSI need to be allowed to have more money for needs, and those former ratios are a historical precedent.
There is currently the S 1384 bill in Congress, to increase resource levels for individuals to 10K and couples’ resource level to 15K, but nothing is happening with it currently. Also, it’s terrible when it comes to allowable unearned and earned amounts – like $111 for unearned and $364 for earned, which is far too little.
One glimmer of hope – the ABLE Act was passed in Dec 2014 for those disabled before the age of 26 – they will be allowed to have a savings account of 100K without having their benefits affected. Will need to say how the money’s being used, but it will allow living expenses to happen, etc. Another bill amendment got introduced in March 2016 to increase the onset age of disability to age 46, and then I think the 3rd bill will be introduced to include all ages. Currently states need to agree to set it up in their states. Someone can apply through another state if that state has it set up, but not their own state yet.
SSI and Social Security Disability are administered by the Social Security Administration, but Congress makes the rules, and the Republican Congress is holding the country hostage, refusing to update the rules to today’s time.
Very few people know what’s going on with disability systems and it’s important to start getting more awareness out, wherever people are –
- June 22, 2016 at 11:02 am
Courageous! If I did this in Ohio they would kick my lifeless body to the curb and move on. I demanded to be treated and it took 2 yrs and $10,000 before a diagnosis. Now it’s reading, learning and doing it mostly on my own.
- June 23, 2016 at 9:57 pm
All he has to do is to drive a few hundred kilometres into the Czech Republic where Lyme Disease is well-known, well-documented and well-treated. He will find diagnosis and treatment there. My Czech teacher had Lyme Disease twice. There are under 500 reported cases of tick-borne Encephalitis every year. There are over 1000 report cases of tick-borne Lyme Disease every year. Ticks are EVERYWHERE in nature during the months of late spring, summer and early autumn. You can walk from your car to the front door and have 8 of them on your shoes. It is a dog culture over here, which is how many people catch ticks, i.e. take your dog for a walk in the park or forest, and he’ll come back with 50 of them on him. Literally 50. And you have to pick them off carefully and wash your hands, as it is well-known some of them can be carrying Lyme Disease and Encephalitis. The government has also estimated which regions of the country are worst affected with these diseases. Ticks are not just in the CR, though. They’re also in Italy, Netherlands and neighbouring EU countries. But they have reached prolific numbers in the Czech Republic. Never used to be like this 30 years ago, when I could play in the hay and grass and forests and I never caught a single one.
- June 24, 2016 at 5:59 pm
Having suffered from the effects of Chronic Lyme for over 30 years, I sympathize with this man. However, I do not think starving ones self will solve anything. There is no quick fix for many other illnesses besides Lyme & it seems childish (to me) to demand a cure. No one lives forever (yet) &we don’t all receive the same level of health or the same length of life. Ultimately we are responsible in large part for our own health. What we choose to put into our bodies can improve our health or destroy it. Antibiotics are not the answer to everything, nor is surgery. Medicine is still in it’s infancy & Big Pharma isn’t helping, nor is any other “bottom line=dollar sign” endeavor. Sometimes we just need to endure.
- June 25, 2016 at 7:25 am
it seems to me that this man could do more to advance treatment for Lyme and Coinfections alive rather than dead. Starving for a cause especially when you are are already sick, only hurts you .. so off to Czech Republic .. get well .. then let the French government have
it , both barrels
- July 9, 2017 at 10:19 am
Does anyone know what happened to him? Was he allowed treatment? Did his hunger strike change anything?
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