News from France

German documentary about living with ME/CFS on French-German public service TV channel, 10.07.2021, 22:40

(also available on the website during the day)

Le syndrome de fatigue chronique - L’EM/SFC, une maladie trop peu (re)connue - Regarder le documentaire complet | ARTE

"Des millions de personnes souffrent du syndrome de fatigue chronique, ou encéphalomyélite myalgique (EM/SFC) : un épuisement extrême et persistant, pour lequel il n'existe aucun remède. Enquête."

https://www.arte.tv/fr/videos/096283-000-A/le-syndrome-de-fatigue-chronique/

For info in English see News from Germany thread.
 
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A planned national study, named COCOLATE, has not started yet because of funding woes, so a team is doing a study on what appears to be the immune response to vaccination. In Paris.

For the PERSICOT study #covidlong , Prof. Salmon needs unvaccinated volunteers who can travel to Paris. 1 blood test will be taken at Hôtel-Dieu. Important: anyone can participate.
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So a group of French physicians is publishing a book with all the answers: "Long Covid: how to get over it". Over in 8 weeks, exercise, nutrition and well-being. Fortunate for them no one has ever thought of that before. They totally cracked it. Geniuses, it's fully solved, nothing left to do. And the quackery mill mills on.

 
rvallee said:
So a group of French physicians is publishing a book with all the answers: "Long Covid: how to get over it". Over in 8 weeks, exercise, nutrition and well-being. Fortunate for them no one has ever thought of that before. They totally cracked it. Geniuses, it's fully solved, nothing left to do. And the quackery mill mills on.

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So turns out this is actually worse, at least one of the authors is involved with the HAS committee advising the government on Long Covid. And this is their program: "reconditioning" people by making them exercise to complete exhaustion. To quote: "we make them pedal until they can't anymore".

There is a serious, fundamental, problem in medicine with learning from experience. Many physicians are completely unable to, and in good fashion they can't recognize that and believe they are absolutely nailing it. They can go through formal training memorizing textbooks but they are completely unable to learn on their own. Without a feedback mechanism and an answer sheet, they are simply incapable of recognizing what's in front of them. This is a major problem. Truly there should be tiers in medicine, the idea that everyone who goes through medical school can function as a fully licensed and independent physician is clearly wrong, some need to operate under constant supervision and should not exceed the textbook, they are incapable of it anyway.

 
So things are definitely not getting better in France. Not sure how much reach this show has but some professor of tropical medicine (what's up with professors of tropical diseases and quackery?!) saying that effort-based rehabilitation basically works 100% of the time at their clinic, probably as long as you don't measure anything. The replies suggest this may be a tad bit dishonest.

 
rvallee said:
So turns out this is actually worse, at least one of the authors is involved with the HAS committee advising the government on Long Covid. And this is their program: "reconditioning" people by making them exercise to complete exhaustion. To quote: "we make them pedal until they can't anymore".
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:banghead: :mad:

We still have a long way to go. :grumpy:
 
Mobilization in Grenoble to demand recognition of myalgic encephalomyelitis, a disabling disease "neglected"

VIDEO REPORT – This Saturday, October 9, 2021, Grenoble hosted a mobilization organized by the association Millions missing France aimed at raising awareness of myalgic encephalomyelitis (ME). A gathering accompanied by La BatukaVI, godmother of the association, particularly aware of this crippling chronic disease which has struck its co-founder.
« It is an invisible disease because the health authorities do not want to see it. Today everything is fine, I am here in front of you, but tomorrow I think I will probably be bedridden but that no one will see. »What Chantal Somm, from the collegiate association, described to an assistance provided Millions missing France (MMF) has the complicated name of myalgic encephalomyelitis (ME). A maladie systémique invalidante which affects more than 300,000 people in France, recognized by the World Health Organization (WHO) since 1969 but still not in France.
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Will the Covid-19 health crisis have an impact on the occurrence of myalgic encephalomyelitis? ” We alerted the health authorities last year telling them that we will have more patients who would develop the disease. But they didn’t hear us then, explains Chantal Somm. We have been since and we work with the High Authority of Health (HAS) for the care of long-term Covid patients “. But also and above all, she explains, “ so that they do not trigger the EM because the first figures which arrive are very alarming. We could double the number of affected patients within a year in France. It is a major public health issue. »
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https://www.archytele.com/mobilizat...ephalomyelitis-a-disabling-disease-neglected/
 
Another in Paris.

Given the size of Long Covid and how small those protests are, the protests the ME community organized over the years look pretty damn solid all things considered. I wonder if there will ever be a fair and thorough account of everything that was done to change this.

 
In this video, Johann's testimony is revealing of EM, but in the end the comment from the GP is horrible. This doctor brings everything back to the simple fatigue experienced in modern society.
 
French medicine continuing to push very hard for psychosomatizing Long Covid. The narrative is pushed everywhere.

 
It seems that some French long haulers who were hospitalized are being sent ads to participate in a mindfulness thingy by the health services. But wait, there's more: they're charged €400. Because it's not insulting enough, asking people to pay for their own gaslighting is... well, typical, frankly.

 
There is a legislative debate today in the French parliament for a LC resolution, 2nd debate.



It appears to have unanimously passed:



I don't know much about French politics, legislative resolutions are typically non-binding so I have no idea how much bite this has. I assume none at all, but that's just because it has worked out this way 100% of the time so far. Let this be the first.
 
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